Has anyone had a preventative DMX years after Lumpectomy?
When I was going through breast cancer in 2021, my breast surgeon, my radiation oncologist, and my oncologist counseled me to get a lumpectomy and radiation. They told me that getting a SMX or DMX for what was thought to be a 5mm tumor (it turned out to be 3mm) was like trying to kill an ant with a sledgehammer. The oncologist went so far as to tell me my cancer was "nothing".
When I had my hour-long meeting with the breast surgeon, she told me the surgery for DMX would be much more involved, therefore longer and "dangerous" due to the time under anesthesia. She also said that I would need 3-4 additional surgeries for reconstruction, and that the recovery was much, much harder with a DMX. She never told me that going straight to implants would be an option. Even though in my heart I wanted a DMX, I felt foolish for taking such a "drastic" measure, especially since she assured me that the survival rates were the same between DMX and lumpectomy with radiation.
What wasn't told to me - by anyone on my team, was that the risk of a NEW cancer (contralateral) was MUCH higher than with a DMX. It stands to reason if there is more breast tissue, there are more places for the cancer to hide. But no one ever went through that with me. Nor did anyone go over my risk factors - very dense breasts, family hx of early ovarian cancer and breast cancer in 2nd relatives, late age of onset (after 50) for my first breast cancer, prior cancer hx (cervical cancer at age 30). I also learned that risk for contralateral cancer increases after age 70, and it's quite high.
I'm not one to worry all the time about cancer coming back, but at my recent breast MRI (which I had to fight for a year to get with my breast surgeon - she only relented when the radiologist told me - and then her - that she could see NOTHING on my mammograms my breasts were so dense, and even an ultrasound was "not much better") - they found a suspicious area in my left (contralateral) breast which had to be biopsied.
The MRI biopsy was one of the most grueling things i have ever been through - not the biopsy itself, that was a piece of cake, but the position I was in. Because the suspicious area was way on the outside edge I was prone but part of my body twisted, and my head sideways, and my left arm twisted. I was in exruciating pain start to finish and at several points thought I wouldn't make it through the hour long procedure. I have cervical stenosis and scoliosis and lots of spinal issues - degenerative disk disease and osteoarthritis, which contributed to the pain. I have had multiple breast MRIs without this kind of pain, but this was on a whole other level. I remember crying and saying to myself, "I can't do this anymore".
That whole event made me start thinking of doing a preventative DMX before another cancer happens. Because if another cancer does happen, next time I might not be so lucky. I didn't need chemo the first time, but I might next time, and I was 64 at the time of my first cancer, now I'm 67, and I know that the treatments will be harder on my body as I age. Even radiation was hard for me (after the fact). I have never recovered to my old feeling of wellbeing.
The other consideration is I have a lot of blood pressure issues and so have to monitor my blood pressure daily. If I get another cancer in the other breast, since at least the sentinel lymph node is taken, and maybe more nodes, I won't be able to use either arm for IVs or BP monitoring.
So…. has anybody else been in this position? Regretted a lumpectomy and had a DMX before something elsee happened? I have appts set up with two breast surgeons to talk through things, and met with my old breast surgeon's PA this week (that breast surgeon is no longer practicing) and she was wonderful. I asked her if doing this was being reactive from the stress of the abnormal MRI and she said "No, your situation is very tricky and you have very "busy" breasts, which are most often seen in pre-menopausal women and have a lot of risk factors (no gene mutations) so it's a valid thing to consider".
I do worry about the surgery, reconstruction and recovery.
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Hello @macdebbie I am sorry for the situation you are in. When I was diagnosed with IDC my surgeon told me I had 2 options - lumpectomy & radiation or mastectomy with or without reconstruction. I was told it would be bring the same outcome as to treating my cancer.
I chose lumpectomy and radiation. I had the surgery late last year. The pathology of my lumpectomy showed more than IDC and my surgeon did say that because of this, my dense and busy breasts and my family history, I have 2 options again - a preventative mastectomy or continue with radiation and after that mammogram and MRI alternately every 6 months and depending on results, biopsy too. When I asked my surgeon how long I need to do this, she said she really can’t say and it depends on the results.
Prior to my diagnosis I had a hard time with my biopsy, I was in a prone position, my neck sideways and etc. The following day I had severe pain on my neck, arm and back that I had to see my PCP and chiropractor for it. Prior to my lumpectomy, a wire was inserted to my breast and it was mammogram guided - much to my surprise I just cried when they were doing the procedure. It must still be the trauma from the biopsy.
I don’t think I can do mammograms, MRIs alternating every 6 months and possible biopsies in between and the waiting game - waiting for the results of my tests. That plus my visits to my oncologist and radiation oncologist if I proceed with radiation. It was just too much for me. I talked with my surgeon again and I have decided to do preventative mastectomy. I just turned 46 y/o when I found out about my cancer diagnosis. When I first saw my breast surgeon keeps mentioning “quality of life” when she spoke of masectomy, I didn’t really understand what she meant by it then but now I do. It’s a very tough decision for me. I still have a lot of worries right now. Sometimes I think I chose wrong but then I also feel like both choices aren’t really good - I mean who wants to have mastectomy or have mammograms and MRIs every 6 months. I just need to do what I need to do.
I really hope you get the support you need from your doctors and you are able to make a decision that works well for you.
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