Not Exactly Remission but a Lull. How to approach this?
Ten months ago I discovered a lump in my left breast. Then came months of diagnostics–it was an unusual NET–rare and aggressive in any case. Then months of delay as kidney disease was diagnosed and nephrologist had to weigh in on anesthesia etc. Then lumpectomy, 3 weeks of radiation, and AI. Tolerated all this. No chemo or targeted immunotherapy due to my preference.
Now active treatment is over. My oncologist will monitor me and do blood work every 90 days. I've been told I can live for a few years, but most likely the cancer will spread. How have other people dealt with this uncertainty? I'm happy be alive and with my family, and feel ok. I'm retired, almost 70, and I was set to go to grad school just for my own edification when I got the diagnosis. I can think of lots of things I like to do–but I feel remote from other people who seem unaware that we are all mortal. I'll take a minimalist approach to future treatment. Should I have short-term goals? Aspirations? Just hunker down in daily life? This experience has changed me–and that is fine–but I can't just go back to living the way I was. Advice welcome! Love the chat board–much gratitude.
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I might have a slightly off center viewpoint on this but, when it was discovered that I had breast cancer (an inordinately huge surprise since there's no cancer in my family) my first thought was that I didn't want to die. I'm a fairly logical person and the next thought was, "Well, hey, wait not dying is not an option at all because, whether I have cancer or not, I will die" so I then shifted my thinking to "I don't want to suffer." And that seemed easier to deal with because a lot of suffering is avoidable. I spent several months falling into the rabbit hole of Google Scholar and reading hundreds of articles on breast cancer and the treatments and the treatment side effects and the complications and the statistics and everything I could find it to try to prepare myself for making the best decisions for me.
And then I got bored with being in when I called Cancerworld and decided to kind of forget about it and get back to my non-cancer life. I likely have a fairly low risk of recurrence, but then I thought I had a zero risk of cancer and was wrong there so who knows?
I don't know if this makes any sense but I feel that we all live with risks of all these things including cancer on a daily basis, whether we've had cancer before or not, so the best protocol for me was to make the best treatment decisions that I could, based on my own personal values, be realistic about mortality and then just forget about the whole thing and go back to living my life.
I would suggest making a long-term goals because long-term goals usually inherently include shorter and intermediate sub-term goals built into the process. The distance you travel is less important in some ways then the direction you travel so you would still be fulfilling objectives and finding joy along the way.
That seems to me one of the best possible uses of a life worth living and would likely also nourish any strength or discipline that you might need to face any other challenges. I'm having fun getting back to my decision at age 14 to become fluent in foreign language of my choice. It has then many decades since I was 14 and, oddly enough it's still fun to learn a new language and to learn how to think in different metaphors. So I would be on the team of Go For It.
You're no less mortal today, having had this experience, then you were before it. It's just more immediate therefore catching your attention, if that makes any sense. So I would suggest being prepared to deal with whatever you have might have to deal with, but NOT until and unless you have to deal with it, but, otherwise just living the life that you want to live.
Hi @mir123 — like you and @callalloo I choose quality over quantity, but to me that means doing what I think I can reasonably tolerate and not live in misery. I declined chemo, but did surgery and radiation. I am currently doing targeted therapy and the side effects are tolerable. I continue to enjoy daily life and focus on short term goals meaning things I want to accomplish in the next year. I do have limited energy so I focus on the things that are most important to me. Prayers for you.
I am about your age and can relate to what you wrote about uncertainty in how to live. In fact, I also am considering school. The effect of cancer on our long term perspective makes commitment hard, but at the same time, we need purpose.
You said you didn't do chemo or targeted therapy due to personal preference. Did you have HER2+? If not, did you have an Oncotype?
It is unusual for an oncologist to say you will "live a few years" and that the cancer will spread. Also, you are being closely monitored. It sounds like your unusual cancer may have an unusual prognosis, or else your doctor is not being careful in what they say. Do you know why your oncologist phrased things in that way? My oncologist does not do blood work or even see me now that I am 8 years out and I try not to think about it but I had grade 3 with lymphovascular invasion.
This thread is typical with posters including one with HER2+, my mixed lobular/ductal grade 3, and one with DCIS (invasive). Decisions and experiences are very different depending on the factors of our individual cancers, as is our perspective on the future.
Now the trick is to keep cancer on the backburner and avoid being too vigilant but at the same time it is hard to take things up again for many reasons. I took baby steps: an art class, for instance or, in your case, maybe one grad class. I hope you get that quality of life you are looking for!
Hello @mir123 I very much felt this way, and I have adjusted my goals. No more long term education goals for this girl. That being said I still do workshops and continuing education, and single classes that interest me. I also took up teaching a bit, not in the classroom sense, but I have a lifetime of knitting and spinning skills I am now teaching to 3 students. I also have 50 years of horse keeping and riding skills, I have two teenage girls learning horsemanship and riding from me I have each one separately one day a week and both girls one day a week.
I took up growing orchids to my menagerie of other interests. I have decided to go where life leads, and I am still having fun doing it.
Have you visited the NET pages on connect?
Thanks so much–I enjoyed hearing what you are doing–inspiring. Yes, I'm on NET group and like it a lot. But I'm kind of between NETs (mine is not hormonal) and breast cancer as my treatment has been for breast cancer and I have those issues. Thanks again for being there.
I like the idea of one class! My daughter & I work together professionally as an artistic team & I might ask her if she'd like to take something with me. I appreciate your response. I think I do have an unusual prognosis in that neuroendocrine tumors in the breast have a very poor survival rate according to the limited stats on them. I just asked the oncologist outright–how long will I live without chemo–and she said bluntly 1-2 years. (That was 6 months ago). The tumor is HER2 but the NET characteristics may mean it won't speed along breast cancer pathways. Granted no one really knows, but I was grateful for this as it allowed me to get my affairs in order and provide a little for nieces and nephews as well as my daughter's family, talk openly to my husband, work with a rabbi and therapist, and generally get prepared. I really appreciate your response. This board helps me feel much less alone. Wishing you all the best–and a pleasant spring!
I really agree with you, and was interested to hear your thoughts on mortality. Mine are similar. I almost died in 1976, and have lived a life marked by various post-viral problems since. But besides the problems, I've tried to live with the awareness that life is limited–even if the human spirit isn't. And this has led to some pretty great adventures and decisions.
I thought what you said was beautifully put–The distance you travel is less important in some ways than the direction you travel.
Thank you–I know exactly what you mean. I've taken a similar treatment path, and am satisfied with it. Wishing you all the best. And I'm grateful for the prayers.
I can hear your sadness loud and clear. I should start out with I was 36 when I had my breast cancer. Total Radical with 14 lymph glands removed and a simple mastectomy two years later. No Chemo, No Radiation, No Tamoxifin none of this was available and definitely no reconstruction. I expected to be dead by age 45 with two children age 6 and 8 and a husband who I loved very much. YET ! Yet, I am here today. Age 92
I worked for a physician and we had a young man who came to see the doctor because he had quite a large lump in his Arm Pit. It was agreed it should be removed but since it was Christmas Time he should wait until after New Year. When it was removed it was found to be a LYMPHOSACROMA and he probably had less than 1 year to live.
He arranged everything he could for his wife and prepared to die. But strange as it seems, he did not get ill, he seemed well and it was decided after a year that there must have been a misdiagnosis. The slides were brought back and re-looked at and it was decided there was no change in the diagnosis LYMPHOSARCOMA. Why was he still alive? I sincerely doubt they ever found an answer.
I think the only answer is that none of us really know the future. If this is true, then we should continue to live our lives that are given to us to the fullest. Do what you like, try someting you never thought you could do, be glad you have the strengh and I hope your life is filled with love ones. I suddenly lost my daughter (age 47) and had to find a way to go on without her. My Husband died 22 years ago. I feel many wonderful days were lost, if I had only known my daughter would be gone so soon. So Pick yourself up, pat yourself on your back for all the courage you have and live every day like the wonderful day it is. Let God take care of the decision as to which day will be the last
Thanks so much! I'm very sorry for the loss of your daughter–so difficult. Appreciate your attitude. Best to you!