The Breast Cancer Diaries, vol. 1, issue 17

 Radiation Week 3 Done, Feeling the Effects

Some interesting and different stuff happened this week, as far as side effects go, and I'll get to them in a moment. But first, I had a pretty big day yesterday, treatment-wise. Before being taken in for radiation, I was met by Tammy, who had given me my first treatment tattoo and set me up with the CT. She told me that after my radiation, I would need to take another CT to prepare for the last leg of my treatment beginning later next week. Now that I've experienced some swelling and other changes in the breast, I can understand why they waited to take this CT until yesterday.

A quick memory jog for you: the first 16 sessions take place with my body facing down, left breast hanging through a hole in the table. The radiation machine treats one side of the area from the armpit to the ribs just below my breast, then swings above me (always feels like it's close enough to bonk me on the head, but never does) and treats the other side, extending to the center of my ribcage. Sometimes, they do it in reverse order.

The final 5 sessions, which they call a booster, will take place with my body laying on my right side, twisted with my left shoulder leaning back so that my scar side of the left breast is available for very targeted treatment.

Tammy and her colleague Kim (who sometimes sets up my treatment with Mitch, who is always there) instructed me to lie onto a thick, blue, bean bag-like pad on top of the CT table. Then, after explaining what would happen, they pushed the pad up around me so that it formed to my body's shape in that position. Then, Tammy used a compressor to vacuum the air out of the pad. The newly shaped form will be used for the future treatments to ensure they treat the same area each time.

They also took digital photographs of me in the position, similarly to they way they photographed me in the position I've been in for the past three weeks. That weirded me out because I'm really protective of my physical self. But, it's necessary for them to make sure they're getting the same spot at my scar every time.

Afterward, I walked across Easton Avenue to the CARES building at St. Peter's for my appointment with Dr. McManus, my breast surgeon. As ever, she thoroughly examined the area, especially the new scar offshoot in my armpit and my exceedingly sore nipple area (more on that later). Dr. McManus said that there is nothing to worry about, thankfully, and that everything she was seeing was as to be expected from radiation.

Then, she leaned in very close (we were both double-masked, with N95s underneath), held my newly trimmed head in her hands, looked me in the eyes, and said, "You're going to get through this, and you're going to be OK." It was profoundly comforting.

Speaking of newly trimmed, thanks again to Kate Jaggers, who gave me the Wahl trimmers; they have come in very handy! (Although, I need practice getting the back of my head.)

To say that I'm grateful to have today off from radiation is putting it lightly. This week, I've been feeling the side effects much more broadly and consistently. In short, the entire left side of my chest hurts all the time now.

Sleep has been even more difficult than usual because if I turn and/or twist, I'll awake from the pain. It's been a strong pulling sensation just to the left of my sternum and along my left flank, below the armpit. The armpit discomfort is pretty steady, as usual.

Another sensation that has returned from post-surgery days is the feeling of having a lightning storm in my left breast. It's like an electric stabbing feeling that starts at my very sore nipple and goes straight back to my chest wall, spreading throughout the breast along the way. Thankfully, I'm having a break from that particular nightmare today, but it sucked mightily yesterday and didn't let up much at all.

Even though I've been advised to wear a cotton bra, today I've returned to my sports bras for more support. It's been helpful. The suggestion to return to more support came from Dr. McManus. I've doubled the frequency of cream applications, which is helping take care of my skin.

If it wasn't so slathered in therapeutic creams such as Calendula and Cetaphil eczema, I think the nipple area would be in really bad shape. Tammy commented on it, "That looks really raw and angry." That's exactly how it feels, Tam.

The rest of the breast is now pretty red, although the scar side remains paler than the inside portion. I asked Dr. Desai's nurse about that, and she said that it happens. I'll see Dr. Desai again on Monday, as per usual.

Otherwise, the prevailing fatigue has really set in. After I do most things, I need a rest. By 2 pm, I'm wiped out. That side effect makes most things a struggle, so during this 2-week vacation, I've been trying to do what I can while I have energy, and resting when I don't. Mornings are much better than any other time.

I'm also having increased memory problems, although that also could be hormones (or lack thereof). I've been forgetting which days I've made plans to walk with people or forgetting to look on the calendar. I've also been forgetting more words than usual. It's tiresome, but for now, I'm very grateful for people who finish my sentences.

After I finish radiation, there's a gap of a couple of weeks before I start the next phase of treatment with Dr. Omene. The break will be appreciated, I predict.

Thanks again, especially to everyone who has been checking in on me lately. I know I haven't been reaching out the way I normally would. I'm just wiped out and stuff hurts.

Thanks, as always, for the prayers, kind thoughts, positive energy, very funny memes and images, movie and TV recommendations, gifts, and love. I am grateful for your continued reading of these diary entries. I can only hope that someone finds them useful someday (or today).

If you haven't gotten your mammogram, please schedule it. Early detection is key.

Happy New Year!!!

The Breast Cancer Diaries, vol. 1, issue 16

Radiation: Nine Treatments Down, 12 to Go

I have a little break today because the radiation treatment center at St. Peter's is closed for Christmas Eve. Even though this and next week's shorter treatment schedule stretches out the number of weeks, I'm glad for the slight pause. Why? I'm feeling some side effects.

On Tuesday, I met Marilyn at Colonial Park for a walk on the D&R Canal Path, expecting it to be pretty typical of our walks. However, this time, it was a struggle. I'd gone for treatment 2 hours earlier, and was feeling a lot of heaviness in my breast, skin sensitivity, acute soreness in my armpit and left side of the breast, and fatigue. Marilyn is used to walking at a quick pace, and normally that's no problem for me. Not this week, though. On the return trip (we had walked south for an hour and then turned around), I kept having to let her know that I simply couldn't walk any faster. It was just too painful and my breathing was labored (which came as a big surprise to me since I've been on the treadmill regularly and going out for walks). I may limit my walks to an hour until after the treatment is over.

My friend Joe, who experienced his own battle with cancer, had warned me that it would get increasingly worse before it gets better. I'm grateful to have been prepared. Talking with many others who have traveled this path previously (no matter what the cancer) has been very useful. Everyone's experience seems to be uniquely theirs. Some people don't have a hard time with radiation, while others like me do.

I met with Dr. Desai twice this week, on Tuesday and Thursday. I asked him what I should do about the next booster since I'm on the J&J vaccine and have had my 2 shots. He recommended getting a booster every 6 months, but if I can get it in January (will be 5 months), I should.

He's keeping a close eye on the changes to the scar and the seroma in my armpit, as well as any changes to the left breast and the skin underneath it. The redness of my skin and associated nipple pain had become considerable, so he instructed me to double the applications of calendula and/or Cetaphil cream for eczema. I'm alternating between the two every few hours, which has helped some. Although at the rate we're going with all this, I may reach the point when I'm constantly schmearing myself with emollients. My original joke with radiation was "Deb, the other white meat," but in reality, I've become a toasted bagel.

I've also begun taking Aleve again daily, which means Nexium, too. When I take Aleve for any long term pain, it causes its own problems. I've tried other medications that I can tolerate, but they haven't been effective for me.

This couse of treatment is to help with the inflammation. I'm experiencing some notable swelling throughout the treatment area this week, and the NSAIDs should help with that. Although frankly, it just hurts all the time. Sometimes it's a continuous dull ache. Sometimes it's the ache plus some stabbing. For instance, as I type this, I'm feeling the big dull ache plus some stabbing in my armpit and left side of my breast. A moment ago, when I got up to apply some cream, I felt the pain of gravity and the swelling.

I just keep telling myself, "This is only temporary. It's just going to feel this way and increasingly worse for just a couple of months." This technique actually works for me, knowing that it will really suck for a period of time, but that there's an eventual endpoint to this pain. I just have to tough it out for a while and endure the new reality as it comes.

Which is not to say that it hasn't crossed my mind that "increasingly worse" could get really bad. When it does, I practice what Rose calls, "Just-in-time worrying." I'm leaving the future in the future and staying in today.

For those of you keeping score, the armpit scar seems to have reached a stopping point with regard to the length/size of the new offshoot. That whole area gets especially red and tender after treatments now. I will see Dr. McManus (my breast surgeon) on the 30th to get her take on it and to give her a halfway milestone on the treatment.

During this week, I've been on vacation and will be next week, too. I'm grateful for the big blocks of time to rest (and to slather on the creams). The recent covid spike has resulted in my returning to my practices of early in the pandemic: only meeting people for walks outdoors (and limiting those), having groceries delivered, and keeping out of indoor public places. If I weren't feeling so sore and wiped out, I'd probably be having a hard time returing to hermitude. So far, the isolation is small potatoes.

Mind you, the huge amount of privilege I have to be able to live this way doesn't escape me for one moment. I am profoundly grateful to be able to afford the outrageous health insurance that covers the best care possible. So many people are not this fortunate, and we are way long overdue for GOOD universal health care.

I'm trying not to think about what happens when the divorce COBRA expires at the end of 2022. But I will reach out to Cigna to seek options because this plan has been a lifesaver, literally.

As ever, I am truly grateful for all your positive thoughts, prayers, kind wishes, gifts, and cheering on (I'm looking at you Mele). I enjoy reading all your feedback in comments, as well as those in private messages and handwritten letters. Thanks for your friendship and love during these challenging times for all of us.

Merry Christmas to all who celebrate!

The Breast Cancer Diaries, vol. 1, issue 15

Week 1 of Radiation Is in the Bag

I'm happy to say that as of this morning, I've completed the 5th session of radiation, which means I've just got 16 treatments left to go. So far, the side effects haven't been that bad. But there's one I need to go see my surgeon, Dr. McManus, about. I won't be able to see her until the 30th, though, due to the holiday.

The incision under my arm, where she removed two lymph nodes has changed. It's tough to explain it, but it now looks like at the bottom end of the smiley face incision, where the smooth scar stops, there's a wiggly scar growing up out of it. My armpit and seroma area especially are now sore. I'll see Dr. Desai on Monday, as I will each week, and he'll take a look at it then.

Dr. McManus had warned me that with radiation two things would happen: 1. I'd probably feel some of the same kind discomfort or pain I had after the surgery, and 2. my breast would change. So far, she was right on both points. As of Tuesday, I'm back to trying to sleep on my right side, with my left arm resting along the top, like I had been after the surgery. Each day this week, there's been some kind of change and addition of discomfort.

Monday was the tattoo bruise, which is much improved thanks to mulitple applications of arnica each day. All of the tattoos are a bit raised so there's a question of whether I'm allergic to the India Ink. They form a constellation of small black dots on the left side of my breast, my side below my breast, on my back, and below my shoulder (where the bruised one is). It wouldn't surprise me if I were allergic. If there's a reaction, weird or otherwise, it seems I'm going to have it.

Tuesday was the addition of the new scar or something else at the lymph incision. Wednesday is what I'm calling Heavy Lefty Day. Since then, it's like Lefty weighs more. Reminds me a lot of the pulling sensation and pain I experienced during the first two weeks after the lumpectomy whenever I removed my bra and needed to hold up Lefty manually. It's not as painful as it was, but, as I said previously, it's changed the way I (try to) sleep.

I'm just having the worst insomnia I've had in my life since I've been off progesterone. Other cancer survivors have talked with me about fatigue. There's a fair amount of it, and I should expect it to worsen as the radiation treatments continue and thereafter for a good month or so. I'm really looking forward to getting a good night's sleep at some point.

Much as the cotton bras are comfortable and well needed at this time to prevent further skin damage from the radiation, they are not very supportive. For a large-breasted person, this presents challenges when trying to prevent the heaviness discomfort. For one, it means that when I walk with friends, I have to ask them to walk slower because bouncing hurts (see also nipple pain; more on that below). But, it too shall pass.

It's a new experience each day. Yesterday, I noticed that my left breast is much warmer than the rest of my body, as one might expect that given the radiation dosage. This morning, I noticed that the scar on the side of my breast has changed color, and there is an extension of the deeper color about 1/8th of an inch on all sides.

Since Monday, the skin on my breast is becoming redder, but only on the side closest to my sternum, and not toward the top. The calendula cream (3x daily so far) is staving off any further burning. Lastly, but not least, my left nipple hurts. All the time. If you've ever experienced chafing there (lots of runners have), you'll understand what I mean.

All things considered, it's really not all that bad. I am pretty tired by the afternoons, but I decided to take some vacation time and will be off from work for the next two weeks. Patty Scott suggested some adventure days, visiting "Some Guy" Park, among other favorites. So, if you're all vaccinated and boosted, and want to meet for a leisurely walk in a Jersey park during the next two weeks, let me know!

Thanks, as ever, for your support, kind words, prayers, love, and gifts. I'm always grateful for all the feedback I receive when I post these updates.

The Breast Cancer Diaries, vol. 1, issue 14

Tattoo'ed Me

Today, I had my first radiation dose and received 4 new tattoos. The set up portion of the appointment took less time than last week's, and was in a different room, with three radiation oncology professionals. I'm not sure (and will ask tomorrow), but one may have been a nurse. One was a trainee being coached through the session.

The table they had me face down on was similar to the previous one, but had a bit more padding on the bar where my ribs were. I was able to relax my neck and turn it at a better, less uncomfortable angle. Since the last appointment, I've been increasing my exercise and yoga, which I'm sure helped. Overall, the positioning wasn't that bad, and I could hack it.

They took several x-rays and aligned me with the radiation equipment afterward. They marked my skin up on several places on the side of my breast as well as my back and under my arm -- about 2 inches left of the lymph incision scar with black marker. Next, Dr. Desai approved the treatment plan after checking out all the images. Then, they gave me the radiation.

The radiation machine first was positioned on my left side for about 2 minutes, then moved up and over me and down my right side, below the table, for treatment there. The actual treatment took about 5 minutes.

Afterward, I was tattooed at the marked up places. They all hurt. "A small pinch" was not what I experienced. More like a quick stab and then a burning feeling. One didn't go well and hurt more than the others. I've got a weird bruise in that spot by the lymph scar. It looks like a deep red circle on top of a dark blue bruise. I put some arnica on it, so that should help. 6 hours later, I'm just a bit sore from the tattoos.

I didn't feel or see any effects from the radiation and didn't expect to today. On my way out of the treatment area, I was handed my schedule on a calendar. I will receive 16 treatments to my whole breast and the lymph area and 5 treatments that will be directed to the lumpectomy region specifically. They call that last portion a "booster." That's the part of the treatment when they switch from proton to electron radiation and change my positioning. The machine also will be closer to the breast, which is hard to imagine. I honestly thought the machine might graze me when it passed over because it was so close.

After the treatment, I visited with Dr. Desai and his nurse. First, I met with the nurse alone, and she interviewed me about the experience and asked me a few general health questions. I had some questions about what to expect, and she readily answered them. She also weighed me. I lost 4 lbs since the last time they weighed me a couple of weeks ago, which is a good thing. I've been giving myself a pass because... CANCER, but I stopped when I made the decision about the radiation vs. chemo. Since I passed the 6-week mark from the surgery, I've gotten serious about returning to healthier eating and increased execise (especially in terms of intensity).

Dr. Desai talked to me about the schedule and what I can reasonably expect and when. I should be alright this week, but by next week, I'll see redness and peeling. Hopefully, no blistering or anything worse. I'll apply the calendula and other moisturizers often and liberally. They recommended Aquafor, but said Cetaphil would be fine.

Then, we talked about the state of the country and politics for a minute before I headed home. Dr. Desai is a big fan of all the stickers on my car (non-political and mostly mention places I've hiked/visited) and started talking about folks with mean-spirited political stickers and heated arguments. I offered that ideally, I'd like to see folks be able to disagree without becoming disagreeable.

I was reminded of my former father-in-law who had very different political leanings. We were able to get along pretty well in spite of it. We even gently poked fun at each other now and then. (Separately, today is 2 years since the divorce was finalized. My answer to folks' questions regarding that today has been "Bigger fish to fry.")

As always, early detection is key. Book your mammograms, folks!

Thanks again for all your support, kind words (and gifts!), prayers, and love. I say it every time because I mean it all the time.

The Breast Cancer Diaries, vol. 1, issue 13

Just a reminder folks, early detection is key. Get your mammograms!

Radiation Treatment Plan and Preliminary CT

Yesterday afternoon, I met with Dr. Desai, my radiation oncologist, to talk about risk, give consent, and map out the treatment plan. Afterward, I had a CT to help with the radiation setup and to confirm if the treatment plan would work for me. We discussed the possible side effects and what I could reasonably expect to experience. He also let me know about my positioning (face down) and why. I also received the first of 3 tiny tattoos on my left breast for radiation positioning.

The risks are typical for radiation treatment, which I've covered in earlier diary entries, so I won't repeat them here. He said I should expect more acute side effects because the treatment time would be compressed. Dr. Desai said he would be following the Canadian fractionation method, which accelerates the treatment time (3 weeks instead of 6) and increases the dosage of radiation. But, I'd need a CT to determine my precise measurements and see if there were too many "hot spots" in the breast to be treated this way.

There's a fair amount of scientific literature supporting the practice, especially for early-stage breast cancers with no positive lymph nodes. I have 1 positive node, but the amount of cancer in that node was 3 mm, so Dr. Desai thinks I'm a good candidate for this method of treatment. What is encouraging is that there were fewer side effects in women receiving treatment in this way than in the longer treatment schedule. I'm hoping that it holds true for me, as well (although with my sensitive skin, it might be an unrealistic expectation). What I'm most concerned about is the area under my breast and where my armpit is. Most issues occur where skin meets skin. I'll be applying the calendula ointment liberally and often after the treatment. Dr. Desai said the reason why they tell patients not to use anything prior to the treatment is that it increases the radiation exposure.

For the first two-thirds of the treatment schedule, I will be lying face down with my left breast hanging through a space in the table, rather than on my back. Dr. Desai explained that this would be done to prevent my heart, lungs, and other organs from experiencing increased exposure to the proton radiation. Later in the treatment, they'll switch it to electrons, and I'll be on my side so the machine will be closer to where my scar is and where the tumor was removed. The tech explained the second positioning to me after she completed the CT scan.

Prior to the technical part of the visit, I was asked to disrobe from the waist up. The tech placed stickers on my scar and nipple. Yep, my favorite -- adhesive on tender areas. At another point, while I was being scanned, she placed another sticker on my back that was supposed to stay on until I returned on Monday. It's already gone. My bra must have rubbed it off.

During the scan, I was positioned on the table in such a way that my neck was twisted toward the right, and resting on a cushion. My arms were over my head, with my hands gripping two vertical handles emerging from the table. The table was a bit dome shaped and only partially cushioned. It arched my back with no knee cushioning. The tech also put a round cushion under my ankles to lift my feet. No wonder Dr. Desai asked if I had any back troubles! I used to have some problems in my lower back, but it wasn't part of this discomfort.

The tilted neck twisting was uncomfortable and bothered me overnight. Worse, there is a metal bar covered by a minimal cushion that lies against the ribs under the breast. I will likely end up bruised in that area from lying on top of it for 15 minutes plus, 5 days a week. I also will be returning to my home yoga practice to deal with the twisting and uncomfortable positioning.

The tech said that everyone complains about the rib bar, but that they wouldn't be able to achieve a reproducible positioning if they tried to cushion it further. If everyone complains about it, why isn't it improved? Going through cancer treatment is tough enough, why can't some engineer develop a more comfortable radiation table experience?

Finally, after the CT scan, the tech gave me a tiny India ink dot of a tattoo on the side of my breast, below the midpoint of my scar by an inch. It didn't hurt while she did it, but I was a little sore afterward. Two more tattoos will be coming on Monday, when the radiation techs complete the set up and give me my first treatment.

 

It's clear that radiation is going to suck, but it's not going to suck as much as chemo. If I can tolerate the higher dosage for the 21 visits, it will be better than drawing it out for 6 weeks. The treatment will go into January because I'll miss two Fridays due to Christmas and New Years Cancer Center closures, but I'll probably need those breaks.

Thanks again for all your support, kind words and thoughts, prayers, and love. It means a great deal when folks take the time to comment.

The Breast Cancer Diaries, vol. 1, issue 12

The New Medical Oncologist and Moving Forward with Treatment

 

Yesterday, Patty and I met with Dr. Omene and her research fellow, Dr. Liu for a second opinion on my oncology treatment plan. It was quite a long wait to meet with them, but it was worth it. Much more on this to follow, but the takeaway is that Dr. Omene will be my new medical oncologist, and I'll be treated by her at the Stacy Goldstein Breast Cancer Center at the Rutgers Cancer Institute. The radiation treatment (as discussed previously) will occur under the care of Dr. Desai at Saint Peter's Radiation Oncology Center as originally planned. My surgeon will remain Dr. McManus. 

 

Earlier yesterday morning, prior to the meeting with Dr. Omene and Dr. Liu, Mom had sent me a copy of the newly published RxPonder paper by Kalinsky et al (https://www.nejm.org/doi/full/10.1056/NEJMoa2108873). This is the clinical trial referenced in the Oncotype results and is pretty much the guidance for treating women with early-stage breast cancer who have similar prognostic elements as mine (hormone positive, HER2 negative, 1-3 lymph nodes positive, etc.).

 

Both Patty and I read it, and Mom walked me through it before Patty gave me her feedback. We all agreed that the most salient point for me was that it showed no chemo benefit for premenopausal women over 50. At the end of the paper, it also said that the benefits they did see were likely because of the ovarian suppression effect rather than the chemo itself. Having the paper in hand and understanding it was key to the discussion with the doctors. Big thanks to my scientist Mom for making that possible.

Back to the doctors. First, we met with Dr. Liu alone. She reviewed my records and asked me what I was thinking regarding the Oncotype test results and the treatment recommended by Dr. Fein. I pointed out the parts of the paper I thought were important and let her know that I was leaning away from chemo. After a long wait (at least 45 minutes), we saw Dr. Omene.

 

She gave us the history of how the research evolved over time, which was interesting, but I was impatient (and hungry because the appointment was at noon, and it was already after 1). However, the longer I listened, the more important the information became. She talked about the ovarian suppression piece of the puzzle and that she didn't think that I needed the chemo. Dr. Omene mentioned that she had brought my case to her director who said that she didn't think I needed it either. It was good to be affirmed. It also was helpful to hear her talk about ovarian suppression because that was not discussed by Dr. Fein at all.

 

I asked her what the treatment plan would be and she explained that I would receive a monthly shot of Zoladex (the ovarian suppression drug) and a daily dose of Tamoxifen (estrogen blocker) until post-menopausal. After menopause, she'll change the pill to an aromatase inhibitor, which will be more effective. I receive the shots for 2 years and the pills for 7. All that treatment begins after the radiation ends. 

 

After the consultation, she gave me a thorough physical exam on my entire chest, not just the left side. I was pretty tender, so that wasn't pleasant. But it was useful for her to see the incisions and the healing, as well as the general state of things. Afterward, I told her I'd like to transfer to her as my medical oncologist and move forward with the treatment plan she described. On checking out, I made the next appointment for the end of January. 

 

Patty and I did our post mortem on the short drive back to my place and over grilled mushroom, butternut squash, and refried beans tacos at the kitchen table. We agreed that it was very productive and that Dr. Omene was the right choice. Overall, I felt relieved to have come to a decision about the treatment plan and to be able to move forward in my breast cancer journey with confidence that this is the right way for me.

 

Next up, scheduling the radiation treatments and figuring out a work schedule/sick time to accomodate them. I'll continue working at home during radiation and likely a month afterward to deal with any cummulative effects (as mentioned in the previous Diaries entry). Fortunately, my Dean has been very supportive and flexible throughout this whole experience. Mind you, I'm not his first employee to experience cancer treatment, so no wheels had to be reinvented. Still, I'm very grateful for my situation and my cool boss. 

 

Thanks, as ever, for everyone's support, kind words and thoughts, and prayers. I'm always glad to have your feedback, especially those who have been on their own journey with cancer.

 

Thanks especially to Patty Scott for showing up in a huge way (as usual).

The Breast Cancer Diaries, vol. 1, issue 11

Meeting the Radiation Oncologist

Preface

A friend who works at the Rutgers Cancer Institute recommended Dr. Coral Omene for my medical oncologist's second opinion. There was some question about if she is in network or not (because she wasn't listed as a provider on the Cigna site), but I contacted my insurance directly, and she is, thankfully. I've got an appointment with her in early December to discuss the Oncotype test results. More on that toward the end of this diary entry.

This Morning's Appointment

I arrived 24 hours early for Dr. Desai. Turns out that I had written the appointment correctly in my datebook, but not on my wall calendar. (Have I mentioned that I really miss progesterone?) But, he and his staff kindly invited me to stay and accommodated me very quickly. Talk about a good first impression!

First, I met with a friendly nurse who went over all my records and talked with me about what to expect during the breast cancer radiation treatment. Some changes may be permanent, such as increased sensitivity to hot and cold temperatures (which also could decrease after 6 months or so) and hyperpigmentation (Lefty and the armpit may appear darker in color than Righty).

Because radiation not only kills cancer cells, it also kills healthy cells, I should expect some redness, dryness, itching, peeling, or blistering in the treatment area. Sam Cummis recommended Calendula for those side effects (and sent me three tubes of the helpful burn ointment, thanks again, Sam!). I can use it afterward, but I'm not allowed to apply any moisturizers 4 hours prior to the treatment.

I will not be able to wear any of my technical, synthetic, long underwear (which is what I tend to live in during winter) and will need to stick to loose-fitting cotton shirts for the length of my treatment and likely a month or so afterward. I'll likely return to wearing sports bras again, too. I'd bought a handful of flannel button down shirts prior to the surgery because I couldn't put things on over my head for a week, so they will come in handy. Will likely need to buy some loose, cotton long-sleeve t-shirts, though.

There may be changes in the breast tissue, as well. According to the handouts, "You may experience changes ... such as fullness and mild swelling; these changes will decrease over time. There also may be occasional warm sensations, tingling, or shooting pains; these sensations decrease slowly over time." Dr. McManus had told me early on that I'd likely experience the same discomfort I'd felt after the surgery, so I'll be taking Alleve once again.

Unfortunately, these effects and others (such as breast firmness or size changes) may last a year or longer.

The other aspect the nurse prepared me for was fatigue. I'll need to take frequent rests and pace my activities during treatment and afterward. Fatigue can last up to a year after radiation therapy ends. Some poor folks never recover their original energy levels after radiation. As long as I can (especially since I'm back to it, albeit slower than usual and at a much lower incline), I'll rise early and walk on the treadmill while it's dark out.

Once we schedule the treatment, I'll have a session that will last 30-45 minutes due to all the set up required. They will take a simulation, which involves a different type of CT machine than you typically use when getting a scan. Thereafter, each session will be 15 minutes (although it might actually take twice that to get the positioning correct), 5 days a week, for 4-6 weeks. Dr. Desai will meet with me each Monday to check on my condition.

Dr. Desai met with me and the nurse after she'd gone over all of the radiation facts and possible side effects. He spoke with me about my situation and performed a physical exam. I asked him if my seroma would delay the radiation, and he assured me that it would not. He'd read all my reports (since he's in the same system as Dr. McManus) and saw that she had aspirated it. It's much smaller now, but I'm still pretty sore in my armpit despite doing all the post-surgery exercises twice a day.

I asked Dr. Desai what he thought about the Oncotype test. He'd been interested in it, and we spoke about it for a few minutes. He brought up my long list of allergies and sensitivities, and I was glad to have been taken seriously about it. Sometimes, docs can brush over it like it's nothing, which makes me unlikely to continue working with them.

He agreed that the 3% difference between the recurrence rates of chemo vs. no chemo (but radiation and estrogen blocker) wasn't a lot. Although he was concerned about the cancer on the lymph node, my high Ki-67, and the grade of the tumor, he didn't think I'd need chemo, but was glad I had an appointment with Dr. Omene, whom he knows and respects. He also believed that she probably wouldn't recommend chemo either. I felt pretty relieved to hear all that and thanked him for his educated opinion. We ended the appointment with Dr. Desai asking me to call him after I meet with Dr. Omene to let him know my decision.

So, I have a little break between doctor's visits until I can go see Dr. McManus again about the armpit discomfort. There's also a small red bump by the end of the breast incision site. My theory is that since the other nylon suture ends haven't yet dropped off, this one ended up inside the incision, and it's causing the red bump. Just a theory, though, so I'll call Dr. McManus next week, after she's back from vacation.

Once again, thank you friends and family for all your support, calls, texts, messages, love, hugs, and gifts. I appreciate all the check-ins, positive vibes, and jokes. Hope everyone celebrating enjoys a happy and healthy holiday!

The Breast Cancer Diaries, vol. 1, issue 10

 A Big Decision

Yesterday, I met with Dr. Fein, the medical oncologist, to speak in person at length about the Oncotype results. After I hadn't heard from him, I called on Thursday and found out from the person on the other end that he'd had the test for about a week. I was a bit miffed at not hearing sooner, but given that we're so close to the holiday and he'd been planning to be on vacation this coming week, I let it go. When I mentioned the delay to a few people, they all said the same thing, it couldn't have been that bad if he didn't call right away.

When he called me back, he went over the report, but wanted to meet in person. So, Marilyn and I returned to his office yesterday afternoon.

My Oncotype recurrence score is 18, which is on the lower side. There are many published studies on Oncotype scores. The report Dr. Fein provided refers to percentages based on "Real World Evidence of SEER Registry Outcomes in Patients Treated Without CT [chemo therapy] Based on RS [Recurrence Score] Results." I had to look up the SEER Registry and found that it is a National Cancer Institutes' Surveillance, Epidemiology, and End Results (SEER) Program. They've been collecting data on different cancers since 1975, although the Oncotype data spans between 2004-2015. Also, they only collect data from slightly over half the U.S. states, including Jersey.

The Oncotype report groups women with my type of early-stage breast cancer into 5 different recurrence score categories. I fall into the one ranging from 16-20. The SEER registry results say that women in my range who do not get treated with chemo therapy have a Breast Cancer Specific Survival Rate of 96.7% after 9 years.

However, for my specific prognostic factors (2 cm tumor, 1 of 2 lymph nodes positive, 3 mm of cancer on the afflicted lymph node, positive for both estrogen and progesterone, negative for HER2, and a high Ki-67 proliferation rate), my percentages were a bit different.

With Tamoxifen or an aromitase inhibitor (plus radiation) alone, my "distant recurrence risk [of getting breast cancer anywhere in my body] at 9 years" is 16%. Dr. Fein further explained that based on the not-yet-published RxPONDER trial results, the risk for premenopausal women who had chemo drops another 3%.

When it came to recommending chemo or not, the report was gray. It said, "CT benefit for this group cannot be excluded." Which is not a solid "Yes," and that means that I have a decision to make.

I've spoken with a few people and joined the Komen Breast Cancer Group on FB. I reached out to the members to ask for their experience. Those in the group with situations similar to mine did not opt for chemo.

When Dr. Fein first called me and briefly explained the results, he did not make a recommendation. For the last couple of days, my gut feeling has been that a 3% difference in recurrence rate isn't enough for me to get chemo, especially with my yard-long allergy and reaction list to medications and other chemicals. So, I'm leaning away from it.

But, I kept an open mind and asked him what he would recommend if I were his sister. He said he was perfectly comfortable if I made the choice to only do the radiation and the Tamoxifen. But he also said he would recommend the chemo. It wasn't a strong recommendation, though, and he said he wasn't "hitting me over the head" to do it.

I am seeking other medical opinions, and will meet with the radiation oncologist, Dr. Desai on Tuesday. I'll need to decide within the next two weeks, because if I do opt for chemo, Dr. Fein will need to get that started by the second week in December. The Thanksgiving holiday makes it difficult to get a second opinion right away, but I hope to connect with another oncologist through a contact at the RWJ Cancer Institute.

In the end, recurrence is possible either way, even though my prognosis is very good and I have an 84% chance of nonrecurrence in the next 9 years. Once again, Dr. Fein said that he believed that Dr. McManus got all the cancer and that I'm cured, but we still need to do something (at a minimum the radiation and Tamoxifen, both of which I fully intend to do) preventative just in case.

I did ask a lot of questions about chemo. Importantly, it's not just chemo when you get chemo. You also get a lot of other drugs including anti-nausea meds, antihistamines, and steroids, which send my typically low blood pressure through the roof. There are a lot of side effects and risks, including allergies and infections, which could necessitate hospital stays -- what you really want to avoid when you have a greatly reduced immunity -- and the extend the length of the treatment.

I would also become menopausal, but at 52, I'm expecting that to happen soon anyway. Oh, and I would lose my hair, which isn't a big deal (see also: buzz and crew cuts), although there are some women whose hair doesn't return after the treatment ends.

There's a lot to weigh. Recurrent breast cancer that spreads is treatable (depending on where it lands and how bad it gets), but not curable. Even if I get the chemo, the chances of my having a recurrence are not that different from those if I don't.

In either case, there will be a lot of what's called surveillance. Dr. Fein will run loads of blood tests to check for any changes or possibility of cancer 3 months after I start the Tamoxifen and then every 6 months for 3 years, and annually thereafter. When I become menopausal during the 5-10 years of estrogen blocker treatment, they'll change the drug to one specifically developed for lower hormones. I'll also be mammogrammed every 6 months for 2-3 years, then once annually. They won't do PET scans unless they have to because it's too much radiation.

To say that I'm seeking clarity on this is an understatement. I will do what I always do when I make any sizable decision: collect information, talk with lots of people, share about it in meetings (recovery), and pray and meditate about it.

As ever, dear friends and family, I appreciate your support, kind words and thoughts, good vibes, virtual and in-person hugs, gifts from afar, and love. Take care of yourselves, schedule those mammograms, and enjoy the holiday (if you observe).

Because folks continue to ask for it, here's the link to my list again: https://www.amazon.com/hz/wishlist/ls/1F3HNL09N3G7C?ref_=wl_share. I continue to add to it, most recently some new books and wool (now that I have no hair, my head gets cold, so I'm knitting myself new hats).

The Breast Cancer Diaries, vol. 1, issue 9

Arnica Works on My Seroma

I just saw Dr. McManus for a pleasant follow up to last week's seroma draining. By Thursday, my seroma had begun refilling, so I decided to apply Arnica gel to it. I'd read a study on Arnica and mastectomies and thought "If it could work on much bigger breast surgeries than my lumpectomy, why not try it?" Besides, I've been using Arnica for years on bruises and seen its effectiveness.

In the past 5 days, it has greatly decreased the fluid collection. However, it takes 5-6 applications a day. For those who don't know, Arnica is a homeopathic remedy that works with the body to reduce swelling and bruises.

At the rate it's been going, the swelling and fluid might be gone around Thanksgiving. Just in time for treatment to start (whichever one that is, we'll find out on or around Nov. 18th).

Dr. McManus prepared me for what to expect from the radiation treatment, including the fact that I may experience some pain or discomfort similar to what I felt right after the surgery. Because it takes 3-4 months to heal after breast surgery, Lefty won't be healed before the treatment starts. If it's radiation instead of chemo right away (what we're hoping for), the radiation will slow the healing process. It will continue, but at a slower rate. I may also notice some shrinking of the breast, which is fine. I'm big enough to spare a little more of Lefty.

A friend and I were discussing scarring earlier. I'm not concerned about the scarring and what my upper left front quadrant looks like. I still look very much like me, with two new, healing scars and a seroma. Whomever I eventually share my body with will have already known about the breast cancer and the surgery. I said to my friend, "If they're not cool, they don't get the goods." My friend corrected me by saying "If they aren't cool, they don't deserve the goods." I agree.

Thanks to you, dear reader, for following along and supporting my journey. I appreciate all the kind words, thoughts, love, and prayers. It all helps.

Thanks also to everyone who sent me lovely gifts from my Amazon Breast Cancer List (See the previous update, issue 8.). It's been the most fun seeing your surprises. For instance, here is a photo of what my Aunt Harriet Kafkewitz sent:

The Breast Cancer Diaries, vol. 1, issue 8

The Highly Optimistic Medical Oncologist

Before I start with the news, here's a quick update from Seroma Land. I was a bit sore after the aspiration yesterday, but I finally slept for 6 hours last night (a new record since being post-progesterone). This morning, it's much more comfortable and my range of motion in my left arm is greatly improved. Dr. McManus expects the seroma to refill, possibly by Friday, but for now, I'll take the break.

By the way, having a blue/purple crew cut has its advantages. Some of the medical staff at Astera have begun to call me by name before looking at a chart (it could also be because I've been around a fair amount recently, but they see a LOT of people). I'm making a concerted effort to learn all their names, too. It's tough because I'm Deb of Little Brain thanks to no progesterone, but the classic method of repeating and using their names to address people is working for me. I'm also an avid note taker and that helps.

In the late afternoon yesterday, Marilyn and I met Dr. Fein in his Somerset office, not far from my house. I am very grateful to live in an area with so many top medical professionals nearby should I need them (which I do now). He made a very good impression on us both.

Probably the best thing about the meeting was that Dr. Fein was incredibly thorough and took his time walking us through my entire medical journey with breast cancer, as well as what I can expect in the future (about 45 minutes). He used my medical reports as a guide, sitting about 6 feet away in a way that we could watch him writing legibly on a pad for me during notable sections. He also drew pictures when applicable. It made me think that he has studied how people learn new information (visual, auditory, reading/writing, etc.) and applied several different styles.

Much of it had been explained at a higher level by Dr. McManus, but there were a few differences and surprises. The first one being that these two docs use different staging methods. Dr. Fein stages me at 1 rather than 2 using a newer method based on the prognostic features shown in the pathology results from the lumpectomy.

To explain, he divided one of his notes pages into two parts: Major and Minor prognostic features. Under the Major features, he listed the size of the tumor (2 cm) and the aspects of the lymph nodes (1 of 2 are positive for cancer and the amount of cancer on the lymph node was small at 3 mm). Dr. Fein explained to us that because the amount on the lymph node was so small, it was right on the border of being positive. If it were 2 mm, it would have been considered negative. He is of the mind that Dr. McManus got it completely, but still wants to treat me preventatively -- more on that later.

The Minor list had 6 factors: margin of the lumpectomy (negative, which is good), grade (II, which is OK), estrogen and progesterone (both positive, which is good), HER2 (negative, which is good), and the Ki67 proliferation rate (high, which is crappy, but not as crappy as it could be). Based on all of that information, he slots me solidly in Stage 1.

The Ki67 number is concerning because it determines the speed of the cancer's growth. Even with all the positive information we have, he said, if I did nothing, I'd have a 20% chance of the cancer recurring in the same breast. With radiation, that drops down to 5%.

To prevent a systemic recurrence (anywhere in the body since some bits have traveled outside the breast, as evidenced in the lymph node being positive for cancer), we need to determine if I'll need chemo or just an estrogen blocker pill and radiation. No matter what, I'll be getting radiation in my left breast and need to meet with the radiation oncologist at St. Peter's.

Dr. Fein will be ordering the Oncotype test later today, which looks at 21 genes in my positive lymph node. It uses a recurrence score to see if I'm a candidate for chemo or not. A low score means just the estrogen blocker pill. Fifty percent of people tested do not need chemo. I truly hope I fall into that category. He said to expect results around Nov. 18. So, I have a bit of a break for 2 weeks.

He didn't go into a great amount of detail about the chemo because we don't know if that's my treatment plan or not. But, he did say that it's an "easy" chemo in that it would be once a month for 4 months. But we'll jump off that bridge if we come to it.

For the estrogen blocker, we'll need to test my hormone levels. I've been off progesterone for almost 2 months, but that's not long enough, so we need to wait a few more months to see. Since that's the last piece in the puzzle, it will line up fine after the radiation. He also wants to test me for BRCA, but thinks it's highly unlikely given that there isn't breast cancer in my family history.

No treatment in any case will start until after Thanksgiving. If it's chemo, that will come first, then radiation, then the pill. If it's just radiation, then a pill, I'd start that in early December. Dr. Fein expects that I'll need 4 weeks of radiation, but that will be determined by the radiation oncologist.

At the end of the discussion, he said that the prognosis is excellent. While I'm very happy about his optimism and about working with a doc who clearly has his act together when it comes to patient relationships, I'm still holding a wait-and-see attitude. Because stuff happens.

Thanks again to everyone who continues to tune in and send support, love, and prayers. You have been making all the difference in this journey.

P.S.

My fun friend Emily Beekman said lots of folks don't know what to do to help, but want to do something along with praying and supporting emotionally. She suggested that I create an Amazon wish list for stuff I might need/want. Although I feel a bit awkward creating which is essentially a breast cancer registry, I continue to add fun and useful things to it: https://www.amazon.com/hz/wishlist/ls/1F3HNL09N3G7C?ref_=wl_share.