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.

The Breast Cancer Diaries, vol. 1, issue 7

 

I'm a Collector

 

So, I've been measuring my seroma each morning to see if it's been growing. This morning, it had increased another .5 inches in depth, up .5 inches from the previous day. It was time to call Dr. McManus, my surgeon. 

 

The scheduler squeezed me in at 1. The doc took one look and prepared to aspirate. I was a little nervous because I didn't know what to expect painwise. But she explained what was to happen, and told me to put my hand behind my head and take some deep breaths. It was a small pinch and then a slightly smaller pinch as she used a large syringe to extract the fluid (she showed it to me afterward, amber and clear -- exactly what you'd expect from normal serum). She emptied the syringe twice. 

 

Dr. McManus said that people with seromas behave one of two ways: absorbers and collectors. We both laughed as she called me a collector because she knows I'm an archivist. Unfortunately, with collectors, we will need to aspirate the seroma up to 4 times (hopefully not more). Consequently, I have an appointment next Tuesday, but if I need to return this week, they'll fit me in on Friday. The doc gave me a hug, and I was on my way.

 

On the drive home, I said to Patty Scott, "Remember how during the biopsy (nearly 2 months ago now) I said that this was just the first of what would be many, many procedures?" I feel like I'm going to surpass what I'd imagined fairly quickly. 

 

Now I'm a little sore and much less seroma-y (swollen below the crease of my left armpit and above the incision), and there's some bandaging and tape that's going to suck coming off tomorrow morning. But, I'm relieved that it wasn't as painful as I thought it would be, and it only took 10 minutes. It just stinks that I'm going to have to experience it a handful of more times before we're through.

 

Also, the post-surgery swelling has decreased to the point where I'm now back in my regular bras and out of the sports bras. I will take all the little victories! 

 

Next up... the medical oncologist in a few hours.