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Background, breast cancer caught very early. It's the kind that feeds off of estrogen. Of course I was on HRT and quit cold turkey. The reaction to cold turkey has been far more devastating than the 2 surgeries (lumpectomy and repeat for margins). Almost within days quitting HRT my hips/sciatic nerve, and herniated disks in my neck are on fire. My EKG went from normal to abnormal. (2 different EKGs within 30 days of each other). I am in the most pain I've been in in over a decade. I am 65 years old.
Because of how early we caught it, I will be eligible for the accelerated radiation (5 days). After that, I am to start drug therapy to kill any estrogen from being produced in my body - the opposite of HRT. I've been reading side effects and it looks like this treatment is going to be brutal for 5 years. So, right now, I am cancer free, healthy, and I am going to take a drug that puts my heart at risk, ortho pain, makes asthma worse and on and on....
Don't get me wrong, I will try it, and the other two drugs just like it. Maybe I am over-reacting, but I don't think so. I have yet to hear from anyone say it barely bothered them.
My thinking is I have maybe 15 years, if I am lucky, to finish this life, maybe 20. Do I really want to do this rx for what I believe is a large part of the time I have?
Anyone else face this decision? I know many will think I am crazy.
You're not crazy. However, you are the only one who can weigh your personal risk/benefit scenario (with the assistance from your doctor of course). What others might do if faced with that decision is up to them. There are subtle considerations playing into risk assessment such as tumor grade and type, not to mention taking advantage of the more sophisticated staging techniques available today.
Other than commiseration and sharing some vents, not really sure how much benefit you'll realize reading other people's anecdotes. It will still come down to your gut.
OK, here's an anecdote FWIW:
I was first diagnosed with estrogen receptor positive BC with positive lymph nodes at age 36. Never used any sort of birth control. Lumpectomy and lymph node removal, radiation, 6 months of high dose chemo, followed by 5 years of tamoxifen. BC staging has gotten a lot more sophisticated since I went through all this so what my risk assessment might conclude now would probably be different. Can't repeat the past so second guessing what was done is sort of pointless.
Over the subsequent years, a couple of benign lump removals.
In year 25, another tumor of basically the same type and level of aggression appeared in the previously radiated breast. That's unusual. I had had enough and opted for a double mastectomy. We also discussed adjunct hormone suppression/aromatase inhibitor therapy but I declined. I'd gotten rid of as much of the misbehaving tissue as possible with surgery, so if BC showed up again it would most likely be some sort of systemic metastasis. That situation would be very different than dealing with more localized disease and that would really influence what if anything I chose to do about it.
FWIW, I'm several years older than you.
Last edited by Parnassia; 06-15-2023 at 04:25 PM..
I agree you are not crazy. One needs to assess their risks of taking vs. not taking the medication with their medical oncologist especially if one has an unusual negative reaction to the anti-Estrogen drug.
If the same were to happen to me, at age 73, I would have a double mastectomy. Both my mother and sister had breast cancer. My mother had a successful radical mastectomy at age 60 and my sister had a lumpectomy at age 74. I'd rather get rid of the offending tissue than go through the side effects of drugs. I already take enough drugs for my heart and don't need any interactions with those. YMMV.
Is there any way that you could gradually go onto these new meds?
I have had prostate cancer which was triggered by my Testosterone. One feature of my journey was two years without Testosterone [during which I had radiation therapy].
The med used to turn off my Testosterone was a single injection repeated at 6-month intervals.
The sudden loss of hormone had a huge effect on me. Hot flashes, sweats, mood swings, I cried at anything and everything. Though honestly after the first year, I think I managed to normalize it.
Now that I am past that stage, I think I can feel my Testosterone gradually coming back. Though I do not anticipate it will return to the same levels it was before my cancer.
You are not crazy, well maybe you are but not over this.
I would be concerned about your sciatic nerve and herniated disks. If the HRT was masking these conditions, you need to get these treated.
My Dw's mother and aunts all died from cervical cancers. So she has a fear of HRT and refuses to use it, even though we have known for 40 years that HRT would have increased her enjoyment of life.
Thank you all for your personal experiences and reassurance I am not insane. I will admit, I was afraid to return and what I would find. A feeling of selfishness strikes me when I think about this possible decision.
I am seeing my primary care on Tuesday. I do intend to try the suppressants, each and every one of the medications, but I want a baseline before I start (EKG, labs, etc). I may even see my cardiologist (when I quit HRT in April, my EKG had abnormal findings from March). Besides symptoms (maybe in my head), I want physical data, as well.
What frustrates me about medicine is each individual doctor has their own agenda. The GYN that advised cold turkey to wash her hands from a lawsuit, no discussion of tapering, as generally advised. The oncologist was "smear the cancer, my way is the only way." I know what estrogen does for the bones, I can only imagine what anti-estrogen does. (Not correct terminology, but brain fog is another recent symptom).
I had a frank discussion with my boys. One gets it, the other only sees losing me. So, for him, and myself, I am going to give it a try, but not at the cost of enjoying life for the next 5 years.
Background, breast cancer caught very early. It's the kind that feeds off of estrogen. Of course I was on HRT and quit cold turkey. The reaction to cold turkey has been far more devastating than the 2 surgeries (lumpectomy and repeat for margins). Almost within days quitting HRT my hips/sciatic nerve, and herniated disks in my neck are on fire. My EKG went from normal to abnormal. (2 different EKGs within 30 days of each other). I am in the most pain I've been in in over a decade. I am 65 years old.
Because of how early we caught it, I will be eligible for the accelerated radiation (5 days). After that, I am to start drug therapy to kill any estrogen from being produced in my body - the opposite of HRT. I've been reading side effects and it looks like this treatment is going to be brutal for 5 years. So, right now, I am cancer free, healthy, and I am going to take a drug that puts my heart at risk, ortho pain, makes asthma worse and on and on....
Don't get me wrong, I will try it, and the other two drugs just like it. Maybe I am over-reacting, but I don't think so. I have yet to hear from anyone say it barely bothered them.
My thinking is I have maybe 15 years, if I am lucky, to finish this life, maybe 20. Do I really want to do this rx for what I believe is a large part of the time I have?
Anyone else face this decision? I know many will think I am crazy.
I had a similar diagnosis. There were thirty-two radiation treatments which were uncomplicated. They wanted me to take the RX daily for five years. It provided a 15% better chance of recovery.
I weighed the pros and cons and after three months of taking it and being ill every day I decline further treatment. I decided at my age it wasn't worth being sick every day for five years for a fifteen percent advantage.
I'm now sixteen years cancer free. But everyone's different. Do you ever post on the National Breast Cancer Forum? They were very helpful to me in making my decision. You can find people whose diagnosis is similar to yours.
What frustrates me about medicine is each individual doctor has their own agenda. The oncologist was "smear the cancer, my way is the only way." I know what estrogen does for the bones, I can only imagine what anti-estrogen does. (Not correct terminology, but brain fog is another recent symptom).
Agreed! Also it seems that everyone gets standard treatment advice without individualizing it according to each person.
Quote:
Originally Posted by Lodestar
I had a similar diagnosis. There were thirty-two radiation treatments which were uncomplicated. They wanted me to take the RX daily for five years. It provided a 15% better chance of recovery.
I weighed the pros and cons and after three months of taking it and being ill every day I decline further treatment. I decided at my age it wasn't worth being sick every day for five years for a fifteen percent advantage.
I'm now sixteen years cancer free. But everyone's different. Do you ever post on the National Breast Cancer Forum? They were very helpful to me in making my decision. You can find people whose diagnosis is similar to yours.
Just a few things to keep in mind about breast cancer.
The curative treatment is surgery to remove the primary tumor.
Radiation is done to reduce recurrence in the breast containing the primary tumor.
Chemotherapy is to try to kill off metastases.
Endocrine therapy tries to
Prevent cancer from coming back.
Reduce the size of a cancer prior to surgery.
Slow or stop the growth of cancer that has spread.
Decrease the risk of cancer developing in other breast tissue.
As far as individualizing treatment is concerned, decision making is complex and based on an evaluation of personal risk that includes hormone receptor status of the tumor and genetic factors. It is not "one size fits all".
Just a few things to keep in mind about breast cancer.
The curative treatment is surgery to remove the primary tumor.
Radiation is done to reduce recurrence in the breast containing the primary tumor.
Chemotherapy is to try to kill off metastases.
Endocrine therapy tries to
Prevent cancer from coming back.
Reduce the size of a cancer prior to surgery.
Slow or stop the growth of cancer that has spread.
Decrease the risk of cancer developing in other breast tissue.
As far as individualizing treatment is concerned, decision making is complex and based on an evaluation of personal risk that includes hormone receptor status of the tumor and genetic factors. It is not "one size fits all".
Not only that, but nothing prevents a prescribing doc from starting with one dose of a med based on parameters such as body weight/mass/surface area but modifying it later. That IS essentially fine tuning it to that specific patient. Doesn't meet the definition of "one size fits all" does it?
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