Next Steps

Chemo Done

The final chemo treatment was a little over two weeks ago, and now I'm feeling much more like my normal self. I can't tell you how exciting it is for me just to feel normal. Chemo is such an invasion of the whole system, and I'm ready to be left alone. I'm also very grateful that I avoided some of the side effects I was most dreading, such as neuropathy (which can be permanent).

Radiation 

But of course there's more to go. Yesterday I had a consultation with the radiation oncology team and learned about the plan.

Many times women who've had a mastectomy can skip radiation, but if there is lymph node involvement and/or the tumor(s) extend beyond 5 cm, radiation is advised. Well I could check both of those boxes, so radiation it is. Plus I'm young and healthy (I know, 45 isn't exactly young, but in the cancer world it is), so I think that means I can take it and am at low risk for getting some things that could bother older or sicker patients.

I go in on Monday for a "planning session" where they scan and x-ray the area and there's a lot of set-up. I get three tattoos that look like pen dots (and being tattoos, will be permanent).

Then 1-2 weeks later I'll start the daily radiation appointments. I'll go in every weekday for six weeks. The radiation treatment itself takes just five minutes, but counting travel time it will probably take a little over an hour out of my day to attend to this.

The main side effects are fatigue, which is cumulative, and getting a "sunburn" on the skin that's being irradiated. For me that's the whole right chest wall and lymph node area.

I'm not sure how uncomfortable the skin is going to get or how much peeling there will be, but it sounded like most people aren't restricted from moving their arm or have to take major pain medicine. I'm also not sure how tired I'm going to get, but I was told that walking daily (which I'm already doing) helps significantly. So I'm going to go into this assuming it's all going to be manageable.

Plus, it's not going to be as hard as chemotherapy! Everyone seems to agree on that. It's good to have the most arduous chapter behind me.

There are other possible side effects that aren't nearly as common, and I'm just not going to worry about those. I was told that the big studies have shown that the benefits (namely reducing the chance of the cancer coming back in that area) outweigh the risks for patients like me, so I decided to trust that and go ahead with it.

How I'm Doing

While I'm not exactly looking forward to radiation, I've accepted that it's what I need to do. My perspective on what is "difficult" has changed this summer! That can work to my advantage. In fact, my perspective on what constitutes a "problem" or something to worry about has also shifted this year.

I need to guard against doing too much too soon, as I don't have all my energy back and won't for some time yet. This is not what I do best.

The Return of My Hair

I'm looking forward to watching my hair grow back. Not all of it fell out, but enough that I look pretty darn bald. It's supposed to start coming back in a couple of weeks. At first it may be downy and/or curly. I don't know when it will be long enough for me to feel comfortable to color it (oh so much gray!) and wear it short - I'll just have to see how it goes.

In the meantime, Mavis is on the clock.

Surgery Set for April 30

Oh boy, another month of waiting!

This time I don't mind. I've got April to plan for taking time off work, getting some logistics for the kids in place, for B. and I to maybe go somewhere for a weekend, and just to enjoy normal life.

I'll be in the hospital for one night, then home sometime Tuesday, May 1, assuming there are no complications.

Yesterday I brought B. along for the pre-surgery appointment. I had the opportunity to talk to the surgeon, Dr. C.,  more specifically about what she's going to do and what I can expect.

Surgery

Dr. C. thinks there's a good chance she can get clear margins, even with the tumor proximity to the chest wall factor. So radiation later is a possibility, but definitely not a foregone conclusion.

As is standard, she'll do a sentinel node biopsy to check on the status of the lymph nodes. Before the surgery I'll get an isotope injected and then during surgery they inject some kind of blue dye and based on what Dr. C. sees in the lymph node area, she'll remove the lymph nodes she needs to. Her guess is that she won't have to take many. I didn't ask why she thinks that - I just went with it.

I believe I'll get a call later that week with some information about the pathology report and then will go into that in further detail with Dr. C. on May 7, when I have a follow-up appointment with her. At that time she'll have at least an overview of what I might expect in terms of additional treatment.

After Surgery

Then I'll see either a radiation or medical oncologist to talk about the plan. (We'll see how long the wait is for that appointment!) I was surprised to learn that I may have some choices to make. I assumed I would be told what to do and would have no options. But Dr. C told me that oncology could present a few options with different pros and cons and that I'd get to pick. Interesting.

What seems to be expected is that I'll go on Tamoxifen (technically oral chemo) for five years. This is a standard drug that pre-menopausal (used to be all women) breast cancer patients go on to suppress estrogen (and maybe some other stuff) and reduce the odds of recurrence or a 2nd cancer. I'm sure I'll learn all about this later.

I also expect to hear about the drug Herceptin, which I mentioned several posts ago, because there is a factor about this cancer that indicates it's receptive to this drug. This factor also indicates that the cancer is on the aggressive side. But for now I'm really trying not to leap too far ahead. (Have I mentioned this is not my strong suit?!)

How I'm Doing

I'm both happy to have a surgery date and dreading it. I'm happy because the sooner I can do this, the sooner I can get through the rest of it and adjust to being a breast cancer survivor instead of be a breast cancer patient.

But I'm dreading it because the surgery marks the beginning of physical changes that I'm just so sad to have to go through. What will I feel like? How will I be changed? What will be my new "normal"? These are all mysteries I wish I didn't have to explore.

Of course at the heart of all this is determination to become cancer-free and be well. But since this cancer doesn't cause symptoms I can feel, it feels surreal to be fighting an invisible intruder. After all, if I hadn't had a mammogram in January, I'd just be living my life as if nothing much were going on.

So while I'm grateful that I don't feel bad physically now, facing the breast cancer surgery and treatment process feels like the beginning of pain rather than the beginning of relief, even though I know it will relieve the cancer. 

Expectations for May

Dr. C. said that she wants me exercising (there are special ones to help gain full movement of my arm and shoulder) right away.  I'm supposed to stay active and I might be able to resume driving after only a week or so.

Of course I'm not supposed to lift more than ten pounds for six weeks,  and there are some other guidelines to follow.

The nurse yesterday said that it can take a month for the general anesthetic to clear your system and that a very common side effect is mood swings. This would be on top of the emotional challenges of this surgery and of facing more treatment.

OK, May is officially Be Kind To Myself Month.

And if you've got any funny stories to tell or distractions to offer - save some for May for me!

Consultation with the Plastic Surgeon

Um, maybe you don't want to read this while you're eating.

The plastic surgeon I met today, Dr. Y.,  lives about a mile away from me and frequents the same coffee place I go to on occasion. Considering he took photos of me wearing lovely blue paper underwear today I'm going to switch coffee places for a while!

Today's meeting led to one firm decision, and that is to delay reconstruction (if I choose to do it at all) until after cancer treatment is done, rather than start it immediately during the breast surgery.

This is because there's a chance I'll need radiation due to the proximity of one of the tumors to my chest wall. If the breast surgeon can't get clear margins as a result, then radiation comes into play.

And as I mentioned before, radiation will pretty well eliminate one of the reconstruction options open to me (the implant, which follows a 3-6 month period of tissue expansion. That sounds fun, huh?)

But we won't know about the need for radiation until the surgery. So it makes no sense to plan to start reconstruction immediately.

Dr. Y. presented an overview of the reconstruction options. All of them have their pros and cons. All of them have potential complications and the potential not to look very good. None of them would look just like my real breast or any real breast.

I'd be a good candidate for a TRAM flap, which is when they use - let's just say material -  from the abdomen to reconstruct the breast. It's not a tummy tuck but it does tighten things there (although it also can look not so great).

There's also a latissimus dorsi flap, when they use material from the back to cover and support a breast implant.

And there's the breast implant that is inserted after breast tissue has been expanded, that doesn't require disturbing any other muscle or tissue in the body (again, not an option if radiation is necessary).

I can decide to do reconstruction as soon as 6-12 months following radiation (if I have to go through that), 1 month following the completion of chemo (if I have to go through that) or years from now.

I'm relieved to have the reconstruction decision and process off the table for now. Even if I were a good candidate for immediate reconstruction, I'm not sure I'd be up to committing to it. And since an implant can look better if done immediately, I might have felt pressure to go ahead and do it, to get the best-looking result possible.

Now I know that I'll have some period of time to adjust to wearing a prosthetic and can put all my medical-related focus on getting through cancer treatment, rather than also dealing with the reconstruction process. I can have time to really process my adjustment to my changed body and, without the distraction of cancer, decide at any time in the future whether I want to pursue reconstruction. This feels right to me.

Next step: I have a pre-op appointment with the breast surgeon on March 29 (she's out of the office this week). I'm not sure what all goes on during this appointment, but scheduling the surgery should be on the agenda. I'm ready to just get this going already.

More Fun with Biopsies

This post is all about medical details - maybe a bit of a snore!

Highlights for the time-crunched among you:

• Ultrasound-guided biopsies done on both sides today.
• Possible MRI biopsy needed on right side, depending on whether today's sampling was successful.
• Besides cancer, there is a potential that the MRI-detected mystery areas have something to do with fibroids (I forget the term).
• I should hear results from today by Monday, March 5.

And here's the whole story:

Today I went in for ultrasound views of both breasts, and the radiologist was able to biopsy both "mystery areas" that were discovered by the MRI on Feb 14. When I made the appointment, the nurse gushed to me over the phone how awesome the radiologist is at finding stuff through ultrasound. I decided to trust this.

I wonder what she says to the patients who see the mediocre radiologists. :-)

It's good news that I was able to have the ultrasound-guided biopsies, because there's a chance that I won't have to have MRI-guided ones later. The procedure today was definitely less of a trial than the stereotactic biopsy of January 30 - it's just not as weird, long or uncomfortable. Plus I brought along my new best friend to assist. ;-)

The radiologist is confident that the left side will not need an MRI biopsy because he's pretty sure he got the area in question. He is less confident about the right side. If the right side comes back "negative", he's going to refer me to an MRI-guided biopsy. But because of the location of the mystery area, they might not be able to biopsy the area, and instead it would need to be removed surgically.

I don't have any idea how this jibes with the fact that there's already known cancer on the right side that at the very least needs a lumpectomy.  But I will have time to gather more information (like the BRCA-1 and 2 blood test results) before making surgery decisions.

I was really impressed by how professional and how very nice everyone was there. In fact, that's been true since the beginning, and I'm telling you it makes such a difference. The nurse took time with me after the procedure to talk with me and told me that in her experience, this period of not knowing that I'm in now is often the very hardest part for women in the whole process.

Not like the rest of it's a cake walk. But still.

I'm in a place where I'm drinking in any positive or hopeful comments like it's water in the Sahara, or sunshine in my northern, currently gloomy, city.

Xanax, My New Best Friend

Had the breast MRI today. If you don't want to hear about it, I advise you to skip this post!

It wasn't bad at all. I got some Xanax beforehand because I said I got a little claustrophic. The anxiety I was feeling about the test, about the surgeon consults later this week and about this whole bad experience in general just kind of receded. Nice.

Of course, driving home was not a possibility. So my mom was there to be my chauffeur.

The machine was kind of like a massage table with strategically placed openings for breasts. I was in a lovely gown and surgical scrub pants, face down in a Superman position with my face in one of those massage table face mask things. Bizarre.

I got earplugs, was scooted into the machine, and lay there for 20 minutes or so. I really had no idea I was in a tube.

The loud sounds were all different. Some sounded like a bad rock band doing a sound check. Some were like the test sound of the emergency broadcast system on the radio. It was all fine.

During the last 10 minutes of the test they injected a dye into an IV that was in my arm. No biggie.

I was told that because the test is so sensitive that having another biopsy to check something out can be common. There is a high rate of it turning out to be nothing. Oh joy, possibly another biopsy.

But this time I will bring along the Xanax. :-)