It’s Good to Have Options – Right?

Of course, I would rather not have breast cancer (even just this little bitty ‘ol Stage 0), but I do. And, I have treatment choices because women who suffered for years at the hands of surgeons who made decisions for them about treatment (“Hmm, long as we’re here doing the biopsy, let’s just cut off the entire breast so when she wakes up, nothing to think about!”), and women forced more detailed research trials and even got legislatures to mandate shared decision-making between breast cancer patients and their surgeons and oncologists.

I entered my surgeon-of-choice office yesterday armed from reading the best scientific evidence available on treating DCIS (ductal carcinoma in situ), a list of questions, and my partner in tow for moral support and to ask questions that I forgot and as an extra ear to hear what undoubtedly would fly over my discombobulated brain. One hour later I am overwhelmed – no closer to a treatment plan than when I went in except that the choice is truly mine.

First the options:

  1. Don’t treat.
  2. Lumpectomy without radiation.
  3. Lumpectomy with radiation (and various types but only one seems viable).
  4. Lumpectomy with radiation plus estrogen blocker of some type.
  5. Mastectomy with or without reconstruction.
  6. Bilateral mastectomy with or without reconstruction.

No treatment is not an option; so scratch that. I want to survive. The rest of the options do not change survival that much but do influence the risk of breast cancer recurrence slightly. Now the kicker, choices are greatly influenced by my weight loss and resulting tremendously saggy breasts. The one body modification I contemplated upon weight stabilization was some procedure to aesthetically lift the behemoths without scarring that could be a worse trade-off for the sagging. Lumpectomy itself is not that big of a deal, but add radiation and one ends up with a “baby breast”  and asymmetry that will be worse than sagging.  If I ever decided that I wanted breast reductions, the radiated side would be almost impossible to operate on because of the tissue changes. To remove just one breast is not acceptable to me. Sorry I don’t want to wear a bra just for a prosthesis, and I can’t be bothered attaching one to my chest, AND WHO CAN MATCH MY OTHER DROOPY BOOB? Mastectomies without anything – don’t think my body image could handle that. In fact I know that I could not. Bilateral mastectomy with reconstruction takes 2 surgeries with the associated risks (infection, bleeding, anesthesia, blah, blah, blah). I would have my breasts lifted in a major league way – new boobs of my choosing; overkill for a breast cancer that rarely kills; no nipples but a chance to get tattoos! (Talk about falsies…) Insurance will cover the reconstruction – has to by law. Again, thank you sisters who have gone before me.

I actually sat down and wrote out the pros and cons of each option, including the physical and emotional impact on me and others that I care about. It covers such things as I am scared shitless of surgery (memories of my cholecystectomy linger), have crappy pain tolerance (yes, there are drugs for that), and worry about recovery impact on Sue and her work schedule. At this point, the decision seems obvious. (Bilateral mastectomy with reconstruction.) But why is it so hard? My best friend, who is precious and wise, texted back, “because it is huge and life changing.” Immediately it occurred to me that it is also irreversible.

To make certain that I have all the information available and fully understand the outcomes of choosing reconstruction, my breast surgeon lined me up with a plastic surgeon for tomorrow afternoon. After that I will make my final decision and go forward because there will be no going back.

Did I mention that I was scared shitless?

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12 thoughts on “It’s Good to Have Options – Right?

  1. Praying for you. This is a huge, life changing decision. It would scare the #$%^ out of me too.

  2. Jan, I’m so sorry to hear. Rats, indeed. It’s so good to have the better options now, although ironically, I was recently reading research on how too many is actually bad – paralyzes us and makes us less satisfied with our decisions more in hindsight. Who knew. However, if there is any one I would trust to make the right decision for herself and her family, it’s you, and I have complete faith that once you’ve made you decision, you will find confidence in it and will work to get the best outcome for you. Whatever you decide, you and Sue have all my support and warm thoughts for healing and peace.

  3. Well, this is just crappy. Man do I hate cancer, it just makes me mad! Call and talk anytime–I will support any decision you make. I am praying for you!

    • I guess it’s more guilt thinking that I can’t live with asymmetrical boobs. Why not just go with lumpectomy/radiation and have a baby breast? (Excluding the “yuk” factor of radiation, having to argue my way out of hormone therapy, never being able to have breast surgery again for cosmetic purposes.) Am I that vane? Guess so.

  4. Jan, Loma Linda is currently recruiting women with breast cancer for their Partial Breast Proton Therapy for Early Stage Breast Cancer. It just might be one more option you could investigate. The website is: http://clinicaltrials.gov/ct2/show/NCT01310530
    When my husband was diagnosed with prostate cancer two years ago, we spent over a hundred hours reading and investigating all types of treatment. Proton beam was always highly regarded as a treatment causing the fewest side effects — but I am sure you know this. It is still a relatively new treatment for breast cancer, but you might just want to take a look at it.
    I know you are not asking for any advice — you will make your own decision regarding your body, and I admire you for this and agree completely that each of us always needs to do this for herself.
    Marsial

    • I am always eager to hear opinions, advice, options!

      The Loma Linda study isn’t recruiting yet and not certain I could live there for 2 weeks of therapy. Thanks for the lead though. The medical school here is doing a study on different types of radiation but since I could be randomized to the group that gets traditional radiation, well guess I’m not willing to go with that. I did search all the government listing of breast cancer trials in my area that applied to my Stage and my characteristics (other women have done this, I would be willing also if something were a viable option).

  5. It’s a difficult decision and you’re right irreversible. But, you are going about it the right way. Thinking it through and getting information. Whatever you choose, the most important thing is that you are comfortable with your choice. At this point there isn’t a bad one. And isn’t it wonderful that you are the one getting to decide, not the disease? Hang in there and sending good thoughts your way.

    • That’s a really good perspective, Ann – that I get to decide not the cancer. Thanks for that!

  6. Since you mentioned that you are open to info – my sister had one breast removed and then had chemo and radiation. She thought she would just deal with the prosthesis thing and she did for many years but it was expensive and limiting. So she finally had reconstruction (her skin was sufficiently healed from the radiation to do so.) She was fine with the appearance of her remaining breast – so you are in a different frame of mind going into the decision. I just thought I would share her experience.

    The only thing I would say is that you can’t always assume this surgery will be as difficult as your last. Yes it will be hugely invasive and you certainly know your own feelings about pain. I know about the guilt of needing to be cared for – however – let those who love you take that on. I know that it is a relief and a pleasure to be able to help someone I love in any way, in fact, in every way I can.

    Wishing you all the best in the days ahead.

  7. Both of my friends with breast cancer opted to have reconstruction surgery right away. They were both pleased withe their results and both cancer free five years later!

    I can only imagine what you are going through and I am so glad you are blogging about it and getting all those feelings out. That has to help.
    I wish I could do something to comfort you but know that you are often on my mind and on my prayer list.

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