hormone replacement therapy and having had breast cancer

Cindy, the fact that you're ER & PR negative probably puts you in a different situation than many of us.  I would suggest finding a really good integrative oncologist and/or naturopathic doctor who will do a complete hormones assessment on you, to help you decide. I've had that test done and my ND actually believes I would benefit from some additional good estrogen (which she has other bc survivors on), but my onc says it would be crazy to risk it (although he did admit to knowing one patient who so far has benefited from it), so I'm still on the fence about it.  In the mean time, I am using a couple of other hormone supplements that my test showed were extremely low.  But maybe start with some in depth testing (like the complete hormones assessment/24-hour urine test), rather than just jumping into it -- to get a really accurate picture of what would benefit you.  Also, if you do decide to use anything, I'd certainly stay away from pharmaceutical HRT, in favor of more natural BHRT.  I personally believe that HRT was a huge factor in my developing bc in the first place, so I'd personally never use the pharmaceutical versions again.     Deanna

I miss how I felt on HRT. It might have given me cancer but it gave me a much better quality of life. My first thought when I was told I had BC was, "oh no, they're going to take away my HRT".   I live in preHRT days - totally fatigued and foggy brained. Life is not so good anymore. I take anti-hormone therapy. My psychiatrist talked to me today about provigil or ritalin. There has to be a workaround to zero estrogen and it's effects.

My goodness - I have been searching for a thread like this one for days. I am having bad perimenopausal symptoms. Will write more later, as I am fading. So glad I founf you all. Off to put this thread on favorites.

I will tell my story later.

painterly, what HRT were you on, if you don't mind my asking?

painterly: as a result of these apparently wild fluctuations in estrogen, I go from insomnia to hypersomina. Insomnia happens when I believe my estrogen levels are low, and hypersomnia is the result of all the meds I have to take to survive the low estrogen. It's a ridiculous wheel of fortune.

(Edited)

Painterly, I wish oncologists paid more attention to the devastating effects of hormone therapy for a subset of bc patients. It's funny, because usually that is considered the easiest part of bc treatment and chemo is the hardest. I didn't take chemo, but hormome therapy almost did me in.

I wish your friend the best of luck!

Bunkie, you do face a hard decision and I wish you the best of luck in making it. Maybe you could wait and see how you feel, and if your SEs continue to be bad - or if they have a strong impact on your life - you can go back.

Cancer doctors frequently only think about the cancer - not always about the patient. I think you RO has ad a rather arrogant attitude. You could try a consult with an obgyn who has a subspecilty in oncology. There may be other options for you - who knows.

But cinrae, you are triple neg - how can your onc be so nervous? Yes, there are people who come back with a different receptor status, but once really have to learn to balance out the needs of the whole patient - not just the cancer.

I don't really have a choice. I could not wait any longer.

I think oncs go on automatic when you bring up the issue of estrogen because of the Women's Health Initiative study, for which the results have long been misrepresented. The truth is, there is no conclusive evidence that estrogen promotes breast cancer. The Women's Health Initiative study results were analyzed in more detail years after the initial hoopla about estrogen supposedly being a culprit and it was found that the correlation with bc incidence corresponded, statistically, to the progestin in some HRT but not the estrogen. But the medical community is often slow to take up new findings.

dropjohn, I could not agree more! You have to WANT to be alive to make survival from bc worth fighting for - people sometimes don't understand that. Sorry if I sound ghoulish. :-)

Yes, that is true. Unfortunately many oncs still counsel against estrogen only but there is no evidence for that which has not been seriously called into question. In fact, estrogen used to be used to treat advanced bc.

Ok, I am new to any type of blog, and and after 3 years of horrible living, I finally found a light at the end of the tunnel and it is a very low dose estradiol patch. I was pre menopausal prior to cancer treatment at age 40, and in the best shape of my life. I did Chemo, Surgeries (I chose a bilateral mastectomy with immediate reconstuction) to avoid radiation. Throughout this process I did very well, and was happy with the reconstruction, and even losing my hair was not bad at all. It was actually easier to get ready for work. Anyway, it was not until Tamoxifen that things went downhill fast. I had horrible reactions on Tamoxifen from severe bruising, to 108 hot flashes in a day, mood swings, etc. I did not do well at all, and was still supposed to work a 40 hour work week as a Nurse. My oncologist suggested a hysterectomy because of my recurrance score of 22% and I was unable to take the Tamoxifen. Really, I should have known then this was a very bad idea. I did get a second opinion, and ended up with the hysterectomy with ovary removal. Since I have tried all estrogen inhibitors since with very poor results, and the surgical menopause if horrible, and everything that goes with it. I do not know what it is like to wear dry clothing (on average 60 to 100 soaker flashes per day), mood swings, joint problems (including a surgery for a failing left shoulder, and now currently a small fracture in my left hip). I have tried everything available for non-hormonal menopause treatment and their version of "Living Better Through Chemistry" with very poor results. I have also tried many alternative therapies from the Black Cohosh, Flax Seed, Evening Primrose, etc. I am currently more worried about losing my bones at close to 43 than anything else. I am a pretty athletic individual and 40 to 50 year olds do not have hip fractures. Exercise builds bone not the other way around.

Anyway, after careful consideration, Quality of Life has become way more important than Quantity. I started a very low dose Estradiol a few weeks ago and starting to feel better. As I stated earlier, I am a nurse, but psychiatric Nurse. My job as well as Physicians is to help people feel better. However, I think that Onclogists see so many of their patients pass away that they are so focused in bring the recurrance rates down to Zero that they do not think about the difficulties the patient may be going through, nor are things explained completely to patients. I think that I was passed through quickly because I was a nurse and I should know most of these things, however, I am a Psychiatric Nurse, not a Oncology Nurse. If I could go back in time I would have proceeded with the Bilateral Mastectomy with Reconstruction, and maybe did the Chemotherapy. With tumor markers of less than 9 after the Mastectomy (that I did not know) and negative scans, I would have never had the hysterectomy with ovary removal, and would have stayed monitored and treat when problems occur. I guess you could say I have "buyers remorse", and changing my recurrance score from 22% to 12% was not worth this fight. It is time to feel better.

Nice to meet you Bren.

I did not think I would get a reply back so Thank You. It is nice to know that I am not the only one out there who has had these kinds of problems. If I would have known things would have been this bad, I would have kept my ovaries, and taken the chance. No one explained to me that if I had that kind of reactions on the medications then taking the ovaries would not be a good idea. For this I fault myself, and I should have done more research. Then treat if the cancer ever came back. After careful consideration with my husband we decided that quality is better than quantity, and I started the low dose Climera patch 3 weeks ago. (After further research Estrogen alone may be a breast cancer protectant, but this is new research. My gyn is looking at this further) Anyway, I went from too many hot flashes to count, no sleep, weight gain, "mean as a grizzly bear", and so depressed I did not care if the cancer came back at least it would have ended the suffering, to now sleeping with manageable hot flashes. I have actually worn dry clothing this past week and it is so nice. Not to mention I have not yelled at anyone in a week. I meet with my GYN next week, and Oncologist the following. no relief and symptoms keep getting worse. When I put a small fracture in my left hip before Christmas, I knew I was in trouble and had to do something quick. Not to mention that this past Thanksgiving I had surgery on my shoulder due to compartment syndrome, bone spurs, and advanced degeneration for my age. My husband will be going with me to both appointments to help sort through all this mess. I know I am taking a huge risk with a tiny bit of HRT, but at now 43 this was a choice I had to make before I lose any more of my bones, or my mind.  (I have also tried the bone medications, no luck) So with tumor markers less than 9, and bone scans reflective with density and degeneration problems we are looking for another solution. I wish there were more studies for people in my age range, in other words, done with having children, but no where near menopause.

Congrats to you on being a 5 year survivor! That is awesome. Just currious how often do you go to your MD's now? I will be three years out July of this year and still go quarterly.