Next Up, Bilateral Oophorectomy
It has been nearly a month since the last update to the BCD. Since I've had some doctors' visits and news this week, I figured it was time for the next installment.
But First, the Burns and Other Concerns
Here's the latest update on the radiation burns in what I will now be calling the inframammary fold (its medical name). At the moment, 4 days off the steroid ointment, there is much improvement. I am very glad for it, but also wary because I've been here before right before it flares right back up. But for now, I'll take it. I see Dr. Singh for a month follow-up early next week.
There has been a great deal of pain throughout the breast, especially premenstrually. I saw Dr. McManus (my awesome breast surgeon) on Tuesday, March 22, and she said that I could be experiencing pain for 6 to 9 months because that's how long it typically takes to heal from radiation treatment. Also, she said that sometimes, women take up to 2 years to heal. Yes, I know.
I had returned to Dr. McManus for a couple of reasons, but primarily because I was concerned that I might have lymphedema in the breast and in my left arm. She examined me at length and said that while she believes that what is going on is skin edema, and not lymphedema in the breast, she wants me to see a lymphedema physical therapist about my left arm. The arm isn't presenting with swelling, just pain running from my elbow up to my armpit and less range of motion than the right arm (not a huge difference, but noticeable to me).
The specialist in lymphedema she recommended is Manasee Korgaonkar. Unfortunately, while she's at St. Peter's like Dr. McManus, she's not in my Cigna network, so that will be out of pocket for a chunk of change. Hopefully, she'll give me a bunch of exercises to do, and I won't need many sessions.
Dr. McManus was very pleased with how the rest of my skin above the inframammary fold was healing from the radiation. In fact, she said that whatever my regimen was (just Cetaphil eczema cream at this point, everywhere except the burned area), it was doing much better than typical treatments at this point in healing, especially in terms of discoloration.
However, she said that it's likely that the radiation damage to the areola is permanent and the topography will remain changed. The painful hypersensitivity to that area and the nipple itself is slowly calming down, for which I am very grateful. It's gone from an 11 to a 7. So, still painful, but not screamingly painful.
Oh, I learned something from a friend who works at the Cancer Institute. Cancer brain, even for folks like me who haven't had chemo, is a real thing. Turns out, because my body's systems are working so hard on healing the stuff below my neck, the brain isn't getting the same level of attention as it usually does. Hence, I have trouble remembering words and feel genuinely stupid on any given day (and while I've had memory problems for a good long time, I'm generally a pretty sharp knife).
A year ago, I'd probably be a bit miffed if you finished my sentence for me or tried to say the word I'm missing. Now, I'm grateful for it. Go right ahead, folks, I'll take the leg up.
The Crappy Bit
The last bit of help Dr. McManus gave me was huge. Prior to my appointment with her, I'd seen yet another gynecologist in the form of Dr. Kira Moore, who is the successor to my now-retired Dr. Tom Magliaro, who was the nicest gyno on two feet.
Dr. Moore is young and inexperienced in a number of ways. She did not know how to speak with a cancer patient. For one example, she asked who was making the decisions for me. I said, "Me! I'm making the decisions for me!" She corrected herself and asked who my medical oncologist was. She also was unkind and rude, cutting me off as I tried to answer her questions. She focused solely on what she called "the business of medicine," and not the patient and her needs to discuss having her ovaries removed to help prevent future breast cancer.
I left with a very bad taste in my mouth and was pretty upset by the experience. I returned home to get my head on straight (and to calm down before I drove out to Flemington in the loaner Subaru to pick up my Impreza, which needed front brakes and some other work--bye-bye tax refunds!). On my return trip, I spoke with a friend from my breast cancer support group, who was exactly the right person to speak with at that moment (thanks N!).
So, I was very appreciative of Dr. McManus' recommendation. In fact, she said that if she was having my oophorectomy, she'd want Dr. Cernadas' hands doing it. Subsequently, yesterday, I spent 4 hours trying to get all my pertinent medical records over to Dr. Cernadas' office so that she could review them prior to seeing me this afternoon.
Just as an aside, I'm convinced that saying Dr. McManus' name enough made the impossible possible. When I initially contacted Dr. Cernadas' very busy office on Tuesday afternoon, my contact there said that the soonest she could see me would be September. I told her my story (Readers' Digest condensed version) and told her what Dr. McManus had told me. She said she'd talk with her manager and call me in a couple of hours. She did, and I had a consult 2 days later.
Immediately after meeting Dr. Cernadas, I felt very much at ease. She had read all those records that I worked hard to get to her, and went over them with me with a high degree of understanding, especially with regard to my sensitivity to medications. She got it all and clearly. I can't adequately express to you the relief I felt when she said, "This should be the least of your problems."
She described the laparoscopic procedure, but did caution me that if there was scar tissue involving major organs or the colon, she'd have to make a small incision at the bikini line to perform the surgery that way (and the healing time would be longer). But, it's likely we'll be good with the laparoscopy.
There will be three incisions, one at each ovary and one under the belly button. She'll remove the ovaries and tubes, as well as any cysts (I have functional cysts by my ovaries that have been nothing but trouble, so I'll be glad to see the backs of them) through the belly button hole. Afterward, I'll be in instant menopause, but likely won't have any symptoms for 2 weeks or so because estrogen will remain in my system for some time.
If all goes well, I'll have same-day surgery. She said to expect to feel like crap for the first 3-5 days. She recommended 2 Tylenol and 2 Advil as a pain reliever periodically. I'll return for a follow up after 2 weeks. I'll be able to walk up and down the stairs, but no heavy lifting or exercising for 2 weeks. Déjà vu.
Dr. Cernadas said that if I had been able to tolerate Tamoxifen, she would have advised removing the uterus for the full hysterectomy since Tamoxifen has a bad habit of causing uterine cancer. But, I get to keep mine because aromatase inhibitors don't have that particular side effect (plenty of other nasty ones, but not uterine cancer).
I should hear from her scheduler tomorrow. We agreed that sooner would be better than later. So, the next adventure approaches.
As ever, thank you for continuing to read along and support me in all the best possible ways: your kindness, compassion, good vibes, powerful positive thinking, prayers, love, hugs, jokes, adventure days, walks in the park, phone calls, texts, letters, post cards, and gifts. I'm especially missing my MARAC friends now since it's conference time. Hopefully, we'll all be together again soon.
Don't forget to schedule your screenings (mammograms, colonoscopies, etc.). Early detection is key.
