My Cancer Story

 October 11/2016
Oh, look!  A year has passed. I have nothing new to report as far as my health goes. My reconstructed breast still feels odd, maybe that's just me. I don't hate it, but it still doesn't seem like a part of me. I've had my annual mammograms. The reconstructed breast gets smooshed too, just not as firmly. I'm still taking Tamoxifen, although we're discussing whether or not we might switch me to an AI (aromatase  inhibitor).  Its for women who are post menopausal, and is supposed to provide greater protection than Tamoxifen. One of the side effects can be joint pain. I'm concerned about this.

October 08/2015
So far, so good. No physical limitations. I feel healthy. I take my Tamoxifen every day, and don't seem to suffer from side effects. My reconstructed breast is staying put, and I'm getting used to it. There are some things I didn't expect, and wouldn't even have thought to ask about. The implant is under the chest muscle, so when I flex my 'pec', it feels odd, and looks odd too. When the weather is cool, the skin over the implant feels cool too, another oddity. And, the reconstructed side doesn't really bounce. I'm not complaining, just observing.

Jan 15/2015
Happy New Year! Well, I was wrong and things weren't all over. Everything healed just fine, no worries. But after several months, it was apparent that the reconstructed breast needed an altitude adjustment; the implant was too low. Low enough that no amount of external support could get things looking even.  I felt my pluckiness failing. The reason for undergoing reconstruction was to look relatively normal.  Every time I looked in the mirror, I felt depressed and let down. My clothes didn't fit right, I didn't want to go work out and blah blah blah.

Early December I had a follow up appointment with my plastic surgeon, and I conveyed my concerns over how things were looking. He said it was no problem, that it could be made better with a short out-patient surgery. Wanting to take advantage of having all my medical deductibles for the year met, surgery was scheduled for the morning of Dec. 31.

I'm hopeful that the last surgery was my last surgery. Other than my own birth, and the births of my 2 sons, I'd never had an over night stay in a hospital and never had pieces of me cut out. Five surgeries in one year? I might as well list being a surgical patient as a hobby on my profile.

So far, the re-reconstruction does make things look better. Closer to even. I'm healing fine, and in another week or two I can get back to a normal, physical routine. I'm really looking forward to that. I almost miss sweeping and vacuuming and yard work. I really do miss being able to grab a broom or a rake and simply taking care of something that needs doing. Today I had to ask DH to put fuel in my car, because the gas cap is too difficult for me to remove right now. Sheesh.

By the way, the left breast that had a mastopexy? Looks amazing.

August 31/2014
It's all over except for the healing. About a week ago I had what should be my final reconstruction surgery. For reasons unclear to me, I was more apprehensive over this surgery than any of the others. Maybe because to me, reconstruction seems cosmetic or optional, and the previous surgeries were part of the treatment. I don't know.

The beginning of August was my last saline injection. The Doctor seemed pleased, he was able to bring the total to over 800 cc. I was less pleased. With the previous expansions my body seemed to adapt fairly quickly and by the second week I wouldn't really notice much difference in how things felt. With the final expansion, my chest muscles always felt strained and a bit uncomfortable. Plus, it seemed like the 'breast mound' felt in the way, it didn't seem like a part of me. I felt like someone had stuffed half a cantaloupe under my chest muscle.

A minimum of 4 weeks is needed between final expansion and surgery, according to my doctor. Time for tissues to adapt and 'settle in' was the term he used. In addition to reconstructing my right breast, modifications were planned to my left breast, purely cosmetic, in order to have a matching set. For the right breast, the expander was replaced with a silicone gel implant. To prevent potential future slippage, the chest muscles below the implant were surgically fixed in place, I'm not sure it involved any cutting, but definitely some suturing. The doctor created a skin crease below the implant to give a more natural shape. More about natural shapes later.

Since the implant is under the chest muscle and fixed in place, it isn't going to sag and right now it sits about where I remember having breasts in my early 20s. I think. It was a long time ago. To keep things as a more or less matching set, my left breast got a makeover. Apparently, it is much easier to make an old breast look like new, than to make a new (reconstructed breast) look old. A much smaller implant was installed under the chest muscle (somehow, in all the discussion I missed this point, I didn't realize it would be under the muscle), a small bit of breast tissue was removed and the chest muscle was fixed in place like on the right side. Excess skin was removed, and the left nipple became a tissue donor for creating a nipple on the reconstructed breast. Except for the nipple tissue donation, the left side got a mastopexy and augmentation.

A reconstruction doesn't seem as physically traumatic as a mastectomy, but recovery still hurts. Maybe more. Now, both sides hurt. After the surgery, I was pretty sure somebody walloped me across the ribs with a baseball bat. Did I mention both sides hurt? Sitting still wasn't too bad, or lying prone on my back. But getting up from a prone position? Ouchie! Oddly, this time around the pain meds didn't seem as effective as before, a bit of a disappointment. But the pain is lessening and things are healing well. 

It will be a couple of months before things with my new and improved (one is new, and one is improved) breasts have settled in and we can see how things look. I don't expect perfection, they weren't a perfect matching set to begin with. But I was used to them. As a woman, my body has gone through many changes, but the changes were fairly gradual and there was time to adjust. This is more like a new haircut. It's not that I don't like it, but I'm really not used to it yet. It's like putting a newly finished piece of wood on an old piece of furniture that has a beautiful patina. With time, I'm sure I'll get accustomed to the change. But as of right now, I'm not sure I would make the same choice. To me, my missing breast, the scar, that was my warrior body. I'd fought a battle and won. I feel a small sense of loss. Perhaps my feelings will change, once I am done healing and can resume all activities.

July 13/2014

I have a 'Barbie' boob. There's my original equipment on the left, that at my age needs all the support it can get, and the Barbie boob on the right. Now that it's getting bigger, it is far more obvious, at least to me. I understand that once the process is complete, this replacement part will look very much like a real boob, but for now it's about as natural looking as a cereal bowl stuck to my chest. It doesn't smoosh into a bra cup, it doesn't jiggle, sag or bounce. phoo.

June 19 2014

Another tip I should've mentioned far earlier. If you're getting prescription medications, consider asking for the non-child proof caps. I found that for the first few weeks, that whole 'push down & turn' to open was painful and difficult.

It's been 4 weeks since surgery, and I'm off restriction. I can wear, reach and do anything I like. Thank goodness. I will be careful, just because the previous 2 surgeries showed me that it is possible to do too much, and spend the next few days with achy reminders.

Now that I'm rather healed up, tissue expansion is underway. The day of surgery, the expander went in with 300cc of saline. Doc says his goal is 650cc. Earlier this week another 150cc was added, bringing the total so far to 450cc. In two weeks we'll have another go. The expander is sort of like a silicone water balloon with a self-sealing port near the top. Everything is under the skin and muscle. The port contains a small bit of ferrous metal so it can be located with little magnet. After an application of local anesthesia, a needle attached to a tube is inserted through the skin and muscle and into the port. The other end of the tube is attached to a syringe-like pump, which in turn is attached to a bag of saline.  The doctor pumps the pump, the saline goes into the expander, and look, my proto-boob is growing. It reminded me of the Bill Cosby routine about the Breast Fairy.

June 12 2014

Recovery is going pretty well. Well enough that I sometimes forget I'm still recovering and then do something that makes me say "ouch". Here's my hot tip mastectomy/breast reconstruction survival; carries a decent selection of front close bras. Order up by 2 sizes, they run small.

May 27, 2014

I had mastectomy surgery last week. Lose a boob, gain a tissue expander. Spent one night in the hospital. When the doc came in the next morning and asked if I was ready to go home, I said "Yes, I need to get some sleep." I live in a very quiet and dark area, and that's what I'm used to at night. Quiet and dark are the opposite of what night in a hospital room is like. Before surgery, some friends said I should stay in the hospital longer, let them take care of me and look after me. Be assured, the nursing staff was all wonderful and nice and very caring, but sort of like the wait staff at some restaurants. They'd pop in with a quick, "Are you okay?" and " I'll check back later." But there was a bit of a wait if I actually rang up and asked for anything. I learned it's important to plan bathroom breaks and pain meds before you actually need them.

Early in the evening a Healing Touch nurse came by, she massaged my feet and then "adjusted" my energy. It was all nice and soothing, I felt like I was at a spa. Until the food came. Take note; if you know you're in for a hospital stay, discuss any food restrictions with your doctor beforehand. I don't have any food restrictions, and it seems I was mostly served wheat, and animal products. Not very appetizing ones at that. I don't know where they hid the fruits and veggies, but I never saw any. Unless you count orange juice or cranberry juice cocktail.

Other things I learned. The wound drain is easier to take care of than I expected. Thanks to a helpful hint from a friend, mine hitches a ride in a small fanny pack (actually, its a dog treat bag, which makes sense if you know me) instead of being pinned to my garments. Except at night. My hair is pretty short, which makes it very easy to wash in the kitchen sink. Sponge baths are better than no baths. Since my surgery was on the right, closing the passenger side door of the car hurt, since I'm still not driving myself the guys know they must shut my door for me. Its perfectly okay to wear my husband's old dress shirts around the house.

May 16, 2014

You know that saying; Life is What Happens While You're Busy Making Other Plans? Yeah, that one. I had a little of list of things I wanted to get done over this week and next, things that wouldn't be easy to do in the few weeks after surgery.  Plenty of time, at least until the fires started. Well, the important stuff, the time sensitive stuff should still get done, and the rest will join all the other projects that reside on the back burner.

May 13, 2014

I've had a pre-op meeting with my plastic surgeon, and I found out more about life after surgery. It goes like this; I will probably have to stay in the hospital one or two nights after surgery. Boo. Things will hurt. Boo. Sponge baths only for a few days. I'm not to lift my right hand higher than my head for more than a few days, and I'll need button front shirts and front hook sports bras, for more than a few days. I had to go shopping, the only button front shirts I have are my husband's old dress shirts that I use for working in the yard. For the first 2 weeks, no real exercise. My heart rate should stay below 110. So I can walk the dog, but I might have to avoid the big hills. After 2 weeks, I'm allowed to get my heart rate up to 140. After 4 weeks, I can start my regular exercises again. All of that is dependent on healing well.

April 21, 2014

Did I mention I decided against chemo? I don't know if its the right decision, but it is the decision that feels right to me.  I am taking tamoxifen, exercising, eating well, sleeping as best I can and living my life. I have a mastectomy scheduled later in May (apparently, good surgeons have busy schedules, and it takes even longer to schedule two) and I've decided to have a reconstruction with an implant.  A decision regarding radiation will wait until after surgery.

March 26, 2014

A week ago, I met with a plastic surgeon, and I'm still not sure if reconstruction/implant is for me. My thoughts are pretty jumbled, and I may seek input from other women to find out how they feel about the decisions they made. At least I don't have to decide right now.

Last Thursday I met with a second oncologist. Her opinion regarding chemotherapy is the same as the first oncologist; I should have chemo. (grumble) She would use a different protocol. I like her, and feel like we have a better rapport so I've switched doctors. She does have questions about my HER2 status (ack!) since both test reports come back as 'equivocal', meaning not positive or negative. That is unusual. Hoping for something definitive, we've sent tissue samples off to the HER2 research expert at USC. Hopefully, we'll end up with a better understanding of my HER2 status. We're pretty sure I'm HER2 negative, especially since my Oncotype DX score was 13. A positive HER2 would produce a higher score.

 I told my new oncologist I will accept chemotherapy, and if I am HER2 positive then I certainly will. But I'm still waffling. If I'm HER2 negative, and my Oncotype score is 13, I don't want chemo. I must be more worried about it than I realize; the very same day, after saying 'yes' to chemo, my throat started feeling sore, my skin started breaking out, I got cold sores, and I've just generally felt unhappy. Am I worrying myself sick? Or is my body trying to tell me something? This afternoon I pick up an actual copy of my Oncotype DX results.

Yesterday I met with a radiation oncologist. I really, really like him. Maybe because very early in our conversation he said, "so why are you considering chemo?" Finally! A doc asking the same questions! We went over the numbers together and agreed, a 2-4% increase in DFS rate at 15 years isn't much bang for the buck. And he didn't automatically say I'd need radiation. He said maybe, depending on 3 main factors (data, my wishes, his feelings on what is best) plus whatever treatment plans I use. Somehow, it all comes back to chemo; lifesaving necessary evil or nasty over-prescribed toxic treatment. 

If I'm not having chemo, I need to get on the schedule for surgery. If I call today, the next available date is probably 3 weeks away. Would it be rude to schedule a date that I might want to cancel if I decide to go ahead with chemo? I guess I can always call and ask. If I'm going in for surgery, which will be a mastectomy, I need to decide about reconstruction as well. If I do anything, I'm leaning toward implant. An implant can be done anytime, but, an implant after radiation doesn't turn out as well (I'm told). And I don't know if I'll need radiation.

I think I'll go back to the flow charts to try and figure all this out.

March 18, 2014

The resection, or second surgery went fine. The post surgical pathology report, not so fine. In laypersons terms, that blob of flesh the surgeon cut out was pretty much lousy with DCIS, and the margins weren't clear. Excuse me, but well *crap*.  Not the news I was expecting, not the news that any of us were expecting. But then, most of it hasn't been. 

My future holds one more surgery,  a mastectomy. :-/  I don't mourn losing my breast, I'm very sure I'll function well without it. Plus, plastic surgeons are very good at creating replacements. (In my head, I keep hearing the line from that old TV show, The 6 Million Dollar Man, "We can rebuild him. Faster, stronger, better." or something like that.) At this point, I haven't decided if reconstruction (remodel? renovate?) is for me; as usual, I want more information first. I consult with a plastic surgeon tomorrow. I'm in my mid-fifties, I want to know if he's good enough to build me a new breast that looks like mine did in my 40s. Anything round and perky is going to look ridiculous on this body. Talk about fresh paint making the carpet look worn out.

What does bother me is recovering from a more involved surgery. The first 2 surgeries, I was sent home with basically a big bandage slapped over the incision site. I could even shower with the thing on. Hmm. Life went on, as if I hadn't had a surgery. Maybe that's what's really bugging me about a mastectomy. There will be a real wound to take care of, more of an impact on my life.

My oncologist wants me on chemotherapy, NOW.  I've asked for more time to decide. My surgeon thinks I should have chemo. Surgery can wait until after chemo; DCIS is not invasive. This decision is hard for me, and so far, I'm not sure why. It's not about losing hair, or feeling nauseous. I don't want to feel weak. I don't want to feel fatigued. I don't want to feel like I'm poisoning my body. On Thursday, I meet with a different oncologist for a second opinion. I expect her to recommend chemotherapy too. Some days I'm sure I won't, and sometimes I'm pretty sure I will. Whatever I decide, I feel like I need to embrace that course of action completely.

I find being a cancer patient time consuming. Way too many doctor visits, way too much time spent online, searching for data, looking for answers, trying to make decisions. I find being a cancer patient inconvenient. I have plans, and plans to make, people to visit and places to go.  Things I'd like to commit to. I'm really not a big planner, I think its funny, how much I'm chafing at feeling like I can't plan right now. Realistically, most of the things I want to plan can happen anytime. I'm just whining.

Feb. 14, 2014

It's fill in the blanks time.

After managing to be "too busy" for a mammogram for 3 years, I finally decided to quit procrastinating and "get 'er done" last October. I wasn't really concerned, I don't know of any blood relatives that have had cancer, and I didn't consider myself at anything other than a normal risk for getting breast cancer. Goes to show you how much I know. The results came back, and the radiologist wanted to see an ultrasound and a diagnostic mammogram of my right breast. Now I felt mildly concerned. But I'd had to go in for 'do-overs' before, and it always turned out to be nothing.

Well, this time it wasn't nothing. It was "a spiculated mass with adjacent micro-calcifications." We scheduled a needle biopsy. Now I was anxious. I started looking things up on the internet. And kept trying to believe it wasn't going to be cancer. Just after Thanksgiving, I heard my diagnosis; Invasive Ductal Carcinoma, or IDC for short. I felt shocked, frightened, angry and bewildered, sort of on a rotating basis. I thought about the recently purchased bras (really), my plans to live well into my nineties, how I wanted to watch grandchildren grow up. Once or twice I got weepy and moped about. Then I accepted that things are the way they are; I let go of the fear and anger, the shock and bewilderment. I decided to learn what I need to know, and get on with my life.

My doctor recommended a surgeon, and the surgeon recommended an oncologist, and now I think I have a pretty good team. I busied myself learning about this cancer, and what I might expect regarding treatment. My surgeon recommended a lumpectomy, but before the actual surgery, I considered everything up to a bi-lateral mastectomy. I figured that if I didn't have breasts, the breast cancer couldn't return. When I mentioned this to my surgeon, she looked me right in the eye and said it doesn't work like that once you *have* cancer. She also said, "You will always be a cancer patient." She said some other things too, about how yes, it would greatly reduce my chances of a recurrence, but not erase them. It was hard to hear the rest over the echo of her words in my head.

In early January, I underwent a lumpectomy and sentinel lymph node removal.  I didn't really want a mastectomy, it's a heck of a recovery process. I didn't have to stay in the hospital, and I was encouraged to resume my normal activities as soon as I felt up to it, as long as I refrained from bouncing and wore the 'surgical vest' all the time, which is like an over-achieving sports bra, and about as comfortable.

The next few weeks were spent healing, and waiting for the final pathology report. The final report confirmed the biopsy report of IDC, hormone receptor positive and HER2 negative. The margins were clear; and two out of the six lymph nodes showed signs of cancer.  The HER2 negative part, that's pretty good news, as cancer news goes. My type of breast cancer is very common, the type found about 80% of the time and considered very treatable. As my oncologist delivered this news, I thought to myself, "oh goody, with this kind of luck I should go buy a lottery ticket!"  There was some not so good news though; near a margin edge, a tiny bit of DCIS not connected to the main tumor was identified. Since it is so close to the margin, we're doing a resection, another surgery at the same site, to remove more tissue and make sure there isn't any more DCIS. So now that everything is healed up, another surgery is scheduled.

So far, I haven't had any treatment other than surgery. The oncologist told me about a clinical study going on right now, evaluating whether or not chemotherapy is the best course of action for breast cancer patients with cases similar to mine. Part of the study involves testing the tumor tissue using the Oncotype-DX breast cancer assay. The tumor gets a recurrence score, 0-100. A low recurrence score is below 18, my tumor received a score of 13. Great news! Please follow the link to read more about the test, I don't want to give an incorrect explanation. 

There is evidence that women with a breast cancer case like me, including a low recurrence score, don't see a great benefit from chemotherapy, that things go quite well without chemo. Right now, chemotherapy is a normal course of treatment for cases like mine, but that doesn't mean it is the best thing to do. I'm really wondering if I want chemo; I need to do more research before I decide.

I'll continue to post additional updates and random cancer thoughts here.

1 comment:

  1. Lots of information to digest here, Shelly. I hope I never need it, but it's good to have it just in case! (Gentle) hugs to you!