I really like what you have said here. I was just diagnosed with a type of cancer that is very rare and very aggressive called midline NUT carcinoma. 30 days of radiation with 4 rounds of 2 types of chemo. I'm having worsening hip pain and shoulder pain. I'll be having another bone scan to see if it is cancer. I'm taking things one day at a time. Being 37 with a 9 year old quality of life is important to me. It's a lot to take in and consider.
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Choices and thoughts…
We are all partners in our own care, and we each have the ultimate right to say No or to ask more questions.
It is important to ask yourself before any treatment/procedure if the intended/hoped for benefit is worth the negative aspects of the treatment. Remember that only YOU can decide what has value for your life. It is important that your doctors be clear on the side effects of a treatment, and on the options available. ASK QUESTIONS.
From my personal experience:
In 2016, I had a recurrence with a tumor on the vaginal cuff. I knew that to remove it, I would lose an unknown portion of my vagina, and I did. But I also thought to ask my surgeon to bring in a plastic surgeon so that we could address possible reconstruction issues. He was happy to bring in a Plastic Surgeon colleague who discussed what might be possible in terms of reconstruction. And yes, the plastic surgeon actively participated in my surgery.
All went well, and ultimately I was left with a functional vagina. However, I was also left with some random cancer cells – he couldn’t get them all, they were scattered through the tissue. My dr wanted me to consult with various radiologists about possible radiation therapy/brachytherapy (internal radiation). One of those drs really wanted to do brachytherapy on me, even though he hadn’t used it for appendix cancer before, in hopes that it might prevent those cells from growing.
My surgeon and I discussed the risk/benefits, and together decided against it. The area to be irradiated was very close to my bladder, and could potentially cause permanent bladder problems. In addition, my tumor type is very slow-growing. What wasn’t mentioned (but I later learned) was the high likelihood that the radiation would permanently scar my vagina so that it wouldn’t be functional again. (This was before I knew that my vagina was functional post-op, as this follow-up occurred before we were allowed to resume activity.)
All this with questionable benefit, so we opted not to go that route. My cancer did recur – a few months later, but in a new location. The brachytherapy would not have prevented my recurrence. My dr mentioned radiation as an option for the new tumor, but he was concerned at how close this was to my bowel, and a high likelihood of permanent bowel damage. After discussion, we realized that I have a very high quality of life; and we don’t know where the next recurrence will be. Radiation wasn’t worth it. I am now simply on watch and wait. My dr felt certain I wouldn’t want the radiation, but he offered it to me anyway, as it was an option that he needed to offer. He and I are very much on the same page regarding quality of life. I don’t want to spend my life within 5 minutes of a toilet.
None of us will get out of here alive. It is important that WE make our own decisions as to what we are comfortable with. Are we looking for Quality of Life or Length of Life? What is the balance point? What are we comfortable giving up in this quest to outrun cancer?
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