Mass decisions

“It is important to fight, and fight again, and keep fighting, for only then can evil be kept at bay, though never quite eradicated.” A. Dumbledore

What an appropriate quote, huh? A Harry Potter version of ‘Run to the Bear’.

Now, the post:

The good news is that I do NOT have to have radiation.

What?!

I know, right.

I have been told since January 2nd that my tumor was just SO HUGE that I would need radiation. There was not a single appointment in which I was told otherwise… Until last week.

I went in to see the radiologist on my team, and she said I didn’t need it. The side effects would do more harm than the radiation would do good.

I KNEW this would upset my surgeon, so I waited for the call from his office. I got it the very next day. My team had decided to send my case to the tumor board and let them decide. They would look over my case as MY case, not as one of the masses with my type of breast cancer. I became an individual when they decided what to do. They looked at my personal history with cancer and the side effects I have or will likely have from my previous treatments, they looked at family history, and they looked at my tumor’s personality… and they said no radiation is needed, apparently.

Would you believe me if I told you this scares the shit out of me? That I’m not that big of a fan of the decision?

I mean, I feel better now that a whole board of people looked at my case. But I still have the lingering feeling from the first day my radiologist threw me that curveball.

When I had cancer at 12 years old, I had a really aggressive treatment protocol. Like, crazy aggressive. I was in the hospital every other week for a week of intravenous chemotherapy. I lost my hair in about a day (ok, really it was about two weeks- but still).  I’ve said it all along, my curse and my advantage in this is that I have done it before. While I look forward to the arrogant surgeons and decisive oncologists, I have expectations for what will happen. And aside from that, I’ve lived in this world of cancer for 15 years. And as stated before, I’ve seen it cause some damage. From that perspective, my thinking is… “What the crap?! No! Blast me!”

However, this is better. I mean. No radiation?! Heck yeah no radiation! I wasn’t looking forward to it; I’m just programmed to think I need to be treated aggressively if I want to live, when it comes to cancer.

So heck yeah, no radiation!

My skin and my heart are rejoicing! No damage will be done to them!

I’m still not done, though. I’ve still got to meet with my oncologist and start this little pill since my cancer is hormone receptive. But hey, I can take a pill every day. Just pass it to me with a diet coke and we will get this done.

Otherwise, this weekend was a bit of a fuss. I ended up at the UAB emergency room because of an exposed stitch that became infected (EW) and some fluid buildup out of NOWHERE. Turns out, I’ve totally over done it and that is what caused the buildup. I am to sit still (don’t use my crutches) and slow down on stretching and such for a while. No more work for a bit and not for long shifts when I go back. Apparently, I jumped back into that a little sooner than my surgeon would have liked.

Oops.

I just really wanted to go back to normal. And since I have been numb up until this weekend, I haven’t been able to tell if I’m overdoing.  I’ve also had some fat necrosis in my side and around the incision. Kinda disgusting, but it has all either gone away on its own or it was taken care of today.

Plans are to get this pill going at the beginning of next month and recon in 11 months. Now, who wants to tell me about their implants??

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15 thoughts on “Mass decisions

  1. I remember after my cancer treatment getting back into things to fast.. Sort of fell in a heap and had to take a backward step… As you say we want to get back to normal and forget we have to have time to heal… 🙂

  2. Your post reminds me of my friend, Brian, who was treated for sarcoma. (I blogged about his initial horrible prognosis over a year ago and recent clean scans!) When he was told that chemotherapy was not recommended for him, he had mixed feelings. He was happy to avoid that lovely having chemo experience but disappointed to have one less tool to fight his cancer.

    Now sounds like a good time to get distracted with your wedding plans. As for me, I recall getting obsessed with making the perfect bows for the pews in the church.

    As for information about implants, I can just share my experiences with a tissue expander, which usually isn’t used before TRAM surgeries (but was for me) but is systematically used before implant surgery. It’s a heap bit better than having no breast but kind of funky. I blogged about my expander a few times, most notably in “Under cover piroshky.”

    P.S. I know you already know this but having hormone responsive breast cancer is better from a prognosis standpoint. I imagine the “pill” they plan to give you is Tamoxifen. I’ve been taking it for months and it is not a big deal. For some women it is more troublesome.

    • Yeah, it’s tamoxifen. I’m hoping it’s no big deal for me.
      I’m finding it really hard to believe that I got lucky as far as this round of cancer is concerned.
      So far, it looks has if ill have a lat flap and implant. They say I’m too small for TRAM and I really don’t want them to even mention the one where they use the bottom bit of your butt.. Ha.
      My distraction is about to be making tons and tons and tons of paper flowers for the wedding 🙂 Hoping it helps keep me away from the ‘what if’s’.
      What type of sarcoma did he have? My first bout with cancer was osteo sarcoma.

      • Well, it’s certainly not lucky to be a cancer patient for the second time in your life at age 27, so the disbelief is totally understandable. But the diseases you’ve had are not the same. The reading I’ve done about cancers make it abundantly clear that cancer is a huge group of diseases. And location makes a big difference treatment wise. It sucks to lose a breast but they are not as necessary as bones, which in your case were not removable! Plus, as you know, our bones make stuff that our whole body needs so if cancer is in the bones, it gets access to a body-wide highway system to spread. So, it makes total sense that they would have blasted the crap out of your cancer last time.

        My friend, Brian had soft tissue sarcoma, which is apparently pretty rare, especially in adults. His onco-surgeon, who is nationally known for sarcoma treatment, is mainly a pediatric surgeon.

        What if’s are really hard. But you have some good “what is” to focus on. You are getting married! Woo hoo! Make those paper flowers!

  3. I am also perplexed. No one can tell me if I need radiation. Maybe / maybe not they say. Risks outweight benefits etc. I was freaked by this. Still am a bit. I had an expander put in at the time of my mastectomy. It’s a hard little sucker but overall the breast shape is way better than my other boob. Can’t wait to have the second mastectomy and expander post chemo. They will swap my first expander with an implant at that time. I will also be on the tamoxifen gravy train! Go us!

    • Not sure why they didn’t give me an expander… Hm. Ill have my other one removed and both replaced later- I just know nothing about implants and apparently I need to! Ha!
      What is this with radiation indecisiveness?! Maybe once you chemo starts they will see how it’s acting, then decide? So weird!
      Woo tamoxifen!
      By any chance, did you develop more pain a month in? My 1 month was Monday and I have SO MUCH pain out of nowhere.

      • Yes I did develop more pain at about a month. Think it was twofold. Drains gone and pain meds gone out of system, and then doing way more. Things take a while to settle and adjust. Tissue explanders aren’t soft and cuddly either. Also found at a month my armpit tightened up and cording starting happening. Had my first physio today to start to fix my useless lymph nodeless arm as couldn’t lift it high or straighten it fully. In one session I improved 25 percent range of movement. Yee hah! There aren’t many studies to show the survival gain is worth it much for us youngens for radio. So I guess that’s whey they are sitting on the fence for me. Each case is different. But mine is multifocal and aggressive, so potential for cells left post mastectomy to take off again. But also risks are pretty high for heart damage and all the rest. So blah blah blah. Glad you actually have a decision made for you. Mine just shrug their shoulders as say its up to me. To fry or not to fry, that is the question? Lol.

  4. My understanding is that expanders are routinely used for implant surgeries because implants are ultimately placed behind the pectoral muscles and the expander makes space for this by gradually stretching your pecs over a few months time. Expanders are not routinely used in flap surgeries.

    I had a skin and nipple-sparing mastectomy. I had lost some breast skin in the previous lumpectomies. My surgeon used a tissue expander (placed in front of my pecs) to stimulate skin growth so that I had as much skin as before my cancer surgeries. That way, he did not have to transplant any of my abdominal skin in the TRAM procedure. He just used abdominal fat and placed it under my breast skin. Whether you’ve had radiation on your breast skin also factors into this decision, because irradiated tissue is not as strong.

    Finally, I don’t know this for sure, but my impression is that there is more variability in how plastic surgeons do their stuff as compared to breast cancer surgeons. When I looked at the research on breast cancer treatment vs. breast reconstruction, there just isn’t a whole lot of research comparing breast reconstruction techniques as compared to the enormous amount of money that goes into researching best practices for cancer treatment. And really, the stakes are so much higher for cancer treatment than for reconstruction.

    • Ive read the same things. Its so bizarre to me. They have said that Ill have implants in both, even with the flap. I have pretty large breasts (or had large breasts/have large breast ha) so maybe that’s why? Its just so weird to me that I cant find much about it.
      My bone with the tumor was actually removed about halfway through my treatment. They had to shrink my tumor quite a bit before I could have a knee replacement, though.
      I thought it sounded odd that he was an adult with a sarcoma- and assumed it was soft tissue. I dont know as much about adult cancers as I do pediatric cancers, though, so wasn’t sure. I do know quite a few childhood cancer survivors that had soft tissue sarcoma’s and they were all 7 and younger. It’s really a whole different culture than breast cancer over there. From side effects to common types, research and funding.
      I feel like I could research and learn about cancer all day, every day, at this point in my life. It is almost second nature, as I never even went more than a year between oncology appointments since before puberty. But researching breast reconstruction is SO overwhelming to me. Maybe because its not a survival thing. I dont know. Thank you for explaining the expander thing to me- while it was mentioned to me, it was not an option really, unless I requested it. My surgeon just said it would be more trouble than it was worth for my surgery so we skipped anything else as far as discussing it.
      What a journey we are making here!
      Thank you so much for all of your feedback, for real. I think in these comments alone I have been reassured- just re-hearing things from a stranger helps! haha

      • You are very welcome! My plastic surgeon said something about perhaps “augmenting” (putting a small implant) into my natural breast (left) because the reconstructed breast would probably be bigger, after the swelling goes down. I’m going to take a pass on that. He’s also suggested my having a lift on my left breast. That I might do. They are just trying to make things symmetrical and you can say “okay” when you want and “no thanks” when you want.

        I know that I am encouraging you to make wedding flowers but if reading and researching is really helpful to you, I have two book suggestions, if you haven’t read them already. The first is “The Emperor of All Maladies.” It is the history of cancer assessment and treatment written by a medical oncologist at Columbia University. It is not as dry as it sounds as the author has a very personal style. The other book is “Anti-Cancer: A New Way of Life.” The author was an M.D. and Ph.D. who upon discovering that he had brain cancer, looked for ways to prevent cancer recurrence that complement traditional medical practices, for example, exercise, mindfulness meditation, and diet. The very famous Anderson Cancer Center in Texas is currently doing a clinical trial evaluating the methods in the book as an addition to traditional western cancer treatment. So this book can give you some of your own tools for healthy living! Skip his turmeric salad dressing, though. Bleh, the man was not a cook!

        • Interestingly, In my mastectomy, the breast surgeon and the plastic surgeon worked together and made decisions about the best way to tackle the cancer first and get a food cosmetic outcome after it. They we’re initially going to put an implant straight in provided the pec could be separated enough off the chest wall. After doing that, it was decided not to implant, but to use expander as implant would have been flattered by pec and bulged out top. Lol.

          • That’s interesting. It’s nice that your surgeons worked together on it. The plastic surgeon I chose does not do immediate reconstruction. All of his reconstructions are delayed. My cancer surgeon, had told me this when we discussed plastic surgeons. He is still an active researcher although he is at a primarily clinically focused hospital. He said that it was a debate among plastic surgeons but doing reconstruction either way was fine from a research standpoint.

          • You are welcome. I was an academic researcher for 10 years after earning my Ph.D., so I am picky about my references. Both are very useful. Be forewarned that the section on environmental toxins in the “Anti-Cancer” book is a little scary. My friend, Nancy, a 10+ year breast cancer survivor and fellow psychologist told me, “Oh yeah. I went to a talk about environmental toxins at the hospital. I wanted to run home, get into my bed, and never get out again. Then I realized there were toxins in my bed, too!”

            I focus on doing what I can. I love my 10 minutes of meditation every morning and every evening, my daily walks, and eating good food. These things have made an immediate positive impact on my daily life and I know they will help me in the long-run, too. I also take a whole lot of supplements as recommended by the naturopathic oncologist I see in addition to my traditional physicians.

            If you read the books, let me know what you think!

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