Estrogen replacement after breast cancer diagnosis anyone???

Boobytrap · February 2016

Hi, I'm coming up to four and a half years post bilateral triple positive breast cancer, with 1 affected lymph node. Over those years I've been on Tamoxifen (refused AI) and more recently raloxifine, because I was hoping it might help my menopausal skin. Anyway, I've been looking into the risks of oestrogen post breast cancer because at 47 years old, I hate the impact low oestrogen has on my skin. From what I can read, it's the progesterone that increases the risk and the oestrogen actually lowers recurrence if anything. I have an appointment with an oncologist on 22/2/16 to discuss this, but just wondering whether anyone else has gone down this track? I know some people may find it frivolous and I should be grateful for being alive, especially as I watched my mum die from this 2 years ago, but I can't face the ravashes of low oestrogen on my skin and moods. I'd rather be dying wishing I could live, than living wishing I could die, if you understand me. And I have had the odd scare since my treatment (albeit probably all in my head) so I know how strong a statement that is. I've tried antidepressants, but they don't do much. Even paid for some therapy, but very expensive and not wildly successful. I still have a womb, so I guess I'd need local progesterone, but the effects of that shouldn't be systemic.

Anyone trod this path????

bluepearl · February 2016

No. Eventually your body will adjust to lowered levels of estrogen. HRT is NOT a good idea. Estrogen was feeding your hormonal positive cancer and will again if there are any loose tumour cells that are hibernating anywhere. Try walking or an exercise program that you like, a good diet with lots of fruit and vegetables, make sure you get enough Vitamin D and find a support system! There are a whole lot of antidepressants to try as well, but a support system and getting your body back to health play a very important role. I cannot stress that low hormones can be a temporary effect...most women who go through menopause, some with very serious symptoms, come out the other end just fine. Treat yourself to some skin lotions, even 100% Aloe.

SelenaWolf · February 2016

Also, DRINK!!! Increasing your fluid intake helps plump up the skin.

Boobytrap · February 2016

Hi

Thanks for taking the time and offering me all your advice. Unfortunately, I do all that already. I'm actually a dietitian, so my diet is extremely virtuous already. I also exercise intensely for 2 hours every day and compete in triathlons, so I've got that nailed. My muscle tone is actually excellent. I use retina a on my face which keeps that OK and have started using it on my arms too. I use lots of lotions and even top them off with rosehip oil. Also I drink lots and as a dietitian I can say that its fluids that count, not water per se. I never drink alcohol and I don't smoke. I wear factor 50 whenever I go outside, even on grey days. So really, I've done everything, except the hormones. Oh and I've even had derma pen on my thighs, but not my arms yet and would be a little nervous re risking lymphedema on my right arm as have no lymph nodes there. I hate the creepy skin that I see whenever I twist my arm and at the rate its progressing will be there all the time. From what I have read, the oestrogen by itself isn't a risk for recurrence, its the progesterone thats the issue. In fact one study showed a lower recurrence with those on oestrogen compared to no hormones. I know it sounds a scary prospect to take oestrogen, but I'm not sure that it should be looking at the literature on oestrogen post breast cancer and no negative effects.

YoungTurkNYC · February 2016

Boobytrap,

It is not correct that estrogen is not a risk for recurrence. Many of us are on drugs that either compete with the estrogen receptor on the cancer cells (such as tamoxifen) or prevent androgen from turning itself to estrogen in our bodies (such as AIs) in order to prevent cancer recurrence. It is NOT a correct statement about estrogen vs. progesterone post-cancer diagnosis. Best of luck to you on whatever decision you make.

Boobytrap · February 2016

Hi

Thanks for your good wishes. However, I feel there is lot of knee jerk reactions against even discussing the evidence. I'm aware of how all the treatments are based on anti oestrogen action. I've actually studied the breast cancer literature hugely over the years since diagnosis, so have always made extremely informed choices. WRT oestrogen, if you look for example at http://www.breastcancerchoices.org/hrt.html and read some of the abstracts, you'll get an idea of where I'm coming from. I've also had some people PM me that they have been put on oestrogen, but I guess there is a pressure not to even be open about it for fear of being slated as irresponsible. I'm not advocating for what other people want to do, but I'm not taking any stage of my treatment without assessing the data myself. Thanks for your thoughts though.

cjafarm · February 2016

Have you asked your doctor about prescribing Vitamin D? I take 50000 iu twice a week and I'm amazed what it has done for my skin.

Boobytrap · February 2016

Thanks for that cjafarm. My vitamin D levels are generally OK, but I'm certainly up for upping my intake as extremely safe. How much are you taking? Is it 50000 international units of vit D?

Also of interest to try previous bumpf on oestrogen, this is another interesting development on it.

http://www.eurekalert.org/pub_releases/2014-07/pf-...

Also see interpretation below.

Eur J Cancer. 2013 Jan;49(1):52-9. doi: 10.1016/j.ejca.2012.07.003. Epub 2012 Aug 11.

Hormone replacement therapy after breast cancer: 10 year follow up of the Stockholm randomised trial.

Fahlén M1, Fornander T, Johansson H, Johansson U, Rutqvist LE, Wilking N, von Schoultz E.

Author information

Abstract

BACKGROUND:

The management of hormonal deficiency symptoms in breast cancer survivors is an unsolved problem. While hormone replacement therapy (HRT) may increase the risk of breast cancer in healthy women, its effects on recurrence is unclear. Observational studies have suggested decreased recurrence rates from HRT. The few clinical trials in this field have all been closed preterm.

METHODS:

The Stockholm trial was started in 1997 and designed to minimise the dose of progestogen in the HRT arm. Disease-free women with a history of breast cancer were randomised to HRT (n=188) or no HRT (n=190). The trial was stopped in 2003 when another Swedish study (HABITS, the Hormonal Replacement After Breast Cancer - Is it Safe?) reported increased recurrence. However the Stockholm material showed no excess risk after 4 years of follow-up. A long term follow-up has now been performed.

FINDINGS:

After 10.8 years of follow-up, there was no difference in new breast cancer events: 60 in the HRT group versus 48 among controls (hazard ratio (HR)=1.3; 95% confidence interval (CI)=0.9-1.9). Among women on HRT, 11 had local recurrence and 12 distant metastases versus 15 and 12 for the controls. There were 14 contra-lateral breast cancers in the HRT group and four in the control group (HR=3.6; 95% CI=1.2-10.9; p=0.013). No differences in mortality or new primary malignancies were found.

INTERPRETATION:

The number of new events did not differ significantly between groups, in contrast to previous reports. The increased recurrence in HABITS has been attributed to higher progestogen exposure. As both trials were prematurely closed, data do not allow firm conclusions. Both studies found no increased mortality from breast cancer or other causes from HRT. Current guidelines typically consider HRT contraindicated in breast cancer survivors. Findings suggest that, in some women symptom relief may outweigh the potential risks of HRT.

Thanks:)

KBeee · February 2016

It looks like a lot of the studies have been done on animals and not necessarily confirmed in humans yet. The study that links the increases to progesterone said it was inconclusive, and there definitely were higher rates of recurrence in the hormone group. It really comes down to how much risk you are willing to take, whether you have kids to live for, etc. Everything has a potential benefit, but carries risk with it. The risks and benefits of estrogen in your situation are clearly unknown since there are few studies. It also depends on quantity vs quality of life, etc. There may also be the challenge of getting a doctor to prescribe the estrogen.

For me, would I do it? Absolutely not. But that does not mean that my choice is right for anyone but me. There are really few right/wrong choices. We each have to make the decisions we feel are best in our own situations. I have a lot of acne on Letrozole and it is really annoying and frustrating. I have been working with a dermatologist, but for now I just live with it and do what I can. I have 3 kids who do not care if I have some acne and I want to be there for them in the future, so fro me, it involves taking few risks. 15 years from now, I might make different choices. Best wishes with whatever you decide.

cjafarm · February 2016

Boobytrap, Yes it is 50000 iu twice a week. I thought last summer I would be getting enough Vitamin D from the sun but definitely could tell a difference when I started taking again.

It was actually prescribed for me because of being low. When it was time for a new prescription the doctor asked if I had noticed a change in my skin.

Boobytrap · February 2016

Thanks for that. I'll definitely look into that and try it. When you say an improvement, are you able to describe in what way e.g. firmer, plumper, less creepy or just glowing? Either way, definitely going to give it a punt. Thanks.

Anonymous · February 2016

My MO tests my vit D levels twice a year. She's adamant about them being in the upper range of normal (50-70). I take 4000 IU every day and so far my levels have been holding steady at 67. I wish I could weigh in on HRT-and I understand your desire to take it. I'd ask my oncologist first or perhaps my gynecologist and then my MO. It sounds like, as per normal for so much of our info on bc, there are conflicting reports. What would hold me back? + lymph node and your grade of 3.

But in the end you have to go with what you believe to be the most credible information at hand and then listen to your gut. Good luck, and let us know.

Claire

dtad · April 2016

Bobbytrap....IMO you have hit on something that might be used in the future. You are right in saying its a very unpopular subject and most won't even discuss it. It will be interesting to see where this goes.....

chef127 · April 2016

I firmly believe that peri menopause, when my hormones were depleting and becoming unbalanced caused the flaw (fibradenoma) in my breast to turn cancerous. My PR levels were all over the place from 64% to 82% on bx's, to negative on surgical path, and 6.9 on the oncodx test. ER was always 95-99% talk about unbalanced hormones. I feel that tamox or an AI would just add to the unbalanced nature in my breasts and my whole body. So, given the chance I would embrace a chance to achieve a balance of all my hormones that are left, HRT. There is a reason that most BC happens during peri and post meno.

Maureen

labelle · April 2016

There are lots of interesting things written about biodentical and regular hormone therapy after BC, including the use of some types of estrogen and progesterone (not to be confused with artificial progestins) and testosterone to deal with BC and the side effects of some of our meds, but dtad is right. There is no appetite for discussing this topic on here. I've tried and gotten either no interest or blown out of the water-sometimes not very nicely.

Do your research. Your oncologist will most likely not be open to the use of hormones in any way,shape or form-most aren't because as my OC told me, she doesn't know enough and not enough is known for her to recommend any HRT-she's an oncologist, not an endocrinologist, nor is she trained in the use of biodentical hormones-no help there. But she did tell me she has other patients using progesterone cream (which is what I use). Sometimes people say their OC had a fit when they mentioned any type of HRT, but I think mine is honest in saying they just don't know. A doctor trained in biodentical hormone therapy or an endocrinologist might be willing to make some suggestions. There are numerous books and articles written on this subject.

Vitamin D is actually a hormone, not a vitamin, despite its name and several studies seem to show it is important in preventing BC and many report maximizing their Vitamin D levels makes anti-hormonal treatment somewhat easier.. Melatonin is another hormone available OTC that women report helps them to feel and sleep better and seems quite safe for women who have had BC. My GP, OC and endocrinologist all approve of me taking Vitamin D and melatonin. Only my endo and my orthopedist (trained in biodentical hormone therapy) actively approve of my use of progesterone cream.

gotgoats · April 2016

I also would do anything to get back on my transdermal estrogen patch. It has honestly been one of the worst things about this event in my life. Once I went off estrogen, my bones started thinning, I am gaining weight like mad, and I just don't feel like myself. I did not go on Tamoxifen as I want to keep what estrogen I have left! I am very active, a runner, do yoga, eat great, go to work, etc. I'd even be willing to be in a study. Anybody know of a study???

Boobytrap · April 2016

Hi all,

What a surprise this morning to see this flurry of activity

Isn't it awful the stigma in even discussing this. OK, I'll let you know where Im currently at. I saw my oncologist approx 1 month ago (at one of the most prestigious cancer centres in the UK) and she agreed to start me on low dose HRT in combination with Tamoxifen as anecdotally they do have some patients on this. I said it seemed a bit pointless giving the HRT, to then also give some antiestrogen therapy, but she said that they still had some relief of their hot flushes, in spite of the added Tamoxifen. She felt 'more comfortable' with the HRT if I had the Tamoxifen. So I got a prescription for Femiston conti 0.5 mg oestrogen (oestrodiol)/2.5mg progesterone (dyhydrogesterone). So I went away and researched a bit more. From the few big studies on this, the benefit of added tamoxifen isn't clear. Its a trend in a subgroup of patients, rather than statistically significant or one study actually had increased mortality in the Tamoxifen group. Of interest too, I found a recent study saying that one of the reasons for improved survival in women who express both oestrogen and progesterone receptors, is that the progesterone receptor sticks to the oestrogen receptor, so turning it off. So, I did A LOT of agonising over what to do. In the end I thought, if I'm going to take something that is a 'potential' risk, I at least want to get the benefit of it. (In those studies, the Tamoxifen did reduce the benefits of the HRT pretty significantly.) Especially when the evidence of the addition of tamoxifen is flimsy at best. So for 1 month now I've been on the Femoston conti, but not taken the Tamoxifen. I saw my onc again this week for a follow up. Whilst my , erhem, 'female dryness below' is much improved, I still feel the dose is too low (I obviously didn't tell her about skipping the Tamoxifen). We are going to review my dosage in 6 weeks time and possibly increase it. In the meantime, I also have an appt at the end of April with a top gynae (privately) who has worked at 2 major London hospitals and written books and studies. I had a brief email exchange with him on the subject and he said "Transdermal oestrogens would be good for your skin and symptoms but there is of course anxiety after breast cancer. Essentially it is your choice, equating your current symptoms to the small extra risk of breast cancer recurrence." So, it will be interesting to see what he has to say. I agree about it being notable that a lot of breast cancer seems to happen in the perimenopause. That's exactly where I was. About 2 years before my diagnosis I developed cystic acne and had tremendous breast pain for the first time in my life. I saw multiple GPs and got fobbed off that pain wasn't a symptom of breast cancer. I also had to go on roaccutane to treat the acne. Clearly something hormonal was going on at that time! I know I'll be condemned for my actions and they'll be lots of 'I told you so' if my cancer comes back. But plenty of women do things by the book and no-one says, well it was your AI or Tamoxifen that caused it. So, after tremendous thought and discussion with my partner, I've made peace with my decision.

chef127 · April 2016

Hello Boobytrsp,

Thank you for your post. Good luck on your out of the box journey. I'm currently looking for a BIHRT my MO will never consider it. Maybe a low dose estring or a cream.

please keep us posted on your way to better health.

Maureen

Surprise1 · April 2016

Hi I was diagnosed with Stage 3 Breastcancer and 27 out of 32 lymph nodes were positive. I had many surgeries because of infections. I was put back on Tomoxifn a year ago, before that tried others. But the pain is the worst. The other side effects I can deal with most of the time. Just had my BCI index done. I really don't understand it, but my oncologist says we have a plan....mine came back high Risk and high likelihood of benefit to stay on my Tomoxifn for another 5 years. Just stay positive, you are not alone.

sbelizabeth · April 2016

In the midst of menopause, my most bothersome symptom was insomnia. I would go night after night sleeping a couple of hours and I felt like I was going mad. My gyno prescribed a transdermal estrogen/progesterone patch and I could sleep again.

Eighteen months later I was diagnosed with Stage 3, 96% estrogen positive BC. I'm convinced that the patch "awoke" and was feeding my BC.

Yes, I would like to not have the aches and stiffness of being on an AI, not worry about my bones and cholesterol, and have a more youthful hoo-ha (lol)... At the same time, I like being alive and I like the feeling of being protected behind an AI shield.

But that's just me.

ksusan · April 2016

My MO is okay with topical estrogen to increase vaginal lubrication or decrease urinary incontinence. She just came back from an onco conference where results supporting this practice were presented.

Boobytrap · April 2016

Hi All,

Some interesting experiences. Sbelizabeth, I totally understand and respect your feelings. My only concern is that we always reach for that attribution when it isn't always the case. For me, for example, I've blamed 1) the stress of emigrating coupled with the enforced chest Xray I had to have to rule out TB. This was approx 18 months before diagnosis, 2) the roaccutane I had to go on due to cystic acne, during which I noticed my boobs get bigger at age 40+ 3) going really heavy handed with lavender oil, which is estrogenic, when I got a burn (I went through about 4 smalls bottle over a week). This was about 6 months prior to diagnosis 4) moving near a power station (the locals were convinced there were higher rates of cancer locally 5) taking oral contraceptives when I was younger, which I did thinking that since my mum had had ovarian cancer and the pill cut down this risk, I was doing something good. As it turned out, I later found out my mums ovarian cancer wasn't of the type that was inherited and wasn't a high risk type. Probably, something was happening before all of this, when I started getting the breast pains and acne. I've lead a virtuous life (don't drink, don't smoke, eat well, exercise lots) and look where its got me! My mum died of breast cancer and she took the AIs. I went to see her in hospital when she had deteriorated. She had already had a break to one arm about 6 months previously. Whilst there, she fell in the bathroom and broke her leg. It was an atypical break, snapping her femur. It was only a few days later when we found out her arm pain was because she had also broken her other arm. I blame the AIs for that. What she didn't do was the lifestyle stuff, as she was morbidly obese and barely moved. I remember when she started the AIs, she was told she had good bone mineral density. Yet that's what the AIs did to her and it wasn't cancer in the bones in those places. At the end of the day, its all a bit of a lottery!! Good luck to us all with such tough decisions.

JuniperCat · April 2016

Hello! You may want to ask your doctor about low dose Estrace. I just found this article that might be of interest (I hope the link works).

http://www.doctorslounge.com/index.php/news/pb/617...

Blessings2011 · April 2016

Hi, Boobytrap!

Yes, an interesting discussion.... so many factors to weigh in.

Personally, I took birth control pills continually for 30 years, then starting at 47, took HRT for perimenopause, and then post-hysterectomy. In all I took HRT for ten continuous years. If I had it to do all over again, I would not have taken it, as my side effects from menopause did not warrant it.

My BC was 100% ER+, my mom was dx'd at the same age I was, and I fully believe that extra estrogen in my body contributed to my eventual dx. HOWEVER, I understand that there is research to the contrary. I just know how I feel personally.

I am done with the AIs, and my MO did prescribe Premarin cream, to be applied topically, as it does not cross the blood barrier. This helped diminish the vaginal and bladder issues I experienced on the AIs.

One thing I did want to bring up on the topic of skin integrity... much of our skin condition as we age (go through menopause, etc.,) is based on genetics. I have heard this from every single Dermatologist I've seen. The skin on my body is dry if I don't use moisturizers after the shower. But at the age of 65, the skin on my face - luckily - is not wrinkly or crepey at all, thanks to a long line of women in our family who just had that kind of skin. It certainly isn't because I take any care of mine, except for sunscreen.

My point is, be sure that whatever you decide is safe for you systemically, because in the long run, taking estrogen MAY not have any effect on your facial skin.

Wishing you the best!

Moderators · April 2016

Surprise1, welcome to Breastcancer.org. Thanks for sharing, and welcome to this amazing community.

TheLadyGrey · April 2016

I have asked every doctor I see besides my dentist for estrogen replacement therapy.

All have categorically refused.

If you are confused by my diagnosis, I also had ER+PR+HER2- IDC.

Boobytrap · April 2016

Hi Suersis

The problem is, anecdotes don't make evidence. All I'm, saying, is that here is a bias towards blaming all breast cancer on HRT whenever anyone has previously used it, whereas no-one blames the lack of HRT when they get diagnosed. Also, I'm not sure that the markers you have reflect the use of HRT. Mine were strongly E+ and Prog+, yet I never took HRT and would have been perimenopausal. I do appreciate your advice, but I need to utilise whatever keeps me going day to day now. It's no point living a long, depressed life. Also, you did seem to go quite a long time from taking HRT to diagnosis. I have taken tamoxifen for 4 years, so I have given it a good try and hopefully got some benefit. An AI isn't even an option for me, for various reasons. Thanks for your thoughts though.

dtad · April 2016

labelle....no surprise that I completely agree with you. MOs are just not equipped to deal with female hormones. I believe this is a huge contradiction since they are the ones prescribing it! I have read where they are using estrogen in post menopausal women with a history of breast cancer in Europe with success. We are usually a little behind them. Im not advocating it just an interesting discussion. Good luck to all..... PS My breast surgeon at a major university based hospital in NYC told me most of his patients have NOT taken HRT before diagnosis

stellamaris · May 2016

Blessings...you mentioned you had bladder issues on the AI. I have been on letrozole since December, and this week started having dire issues with bladder control. Very strong and frequent urges to "go" with very little output. This was my first week back to work and it has been awful, having to stay near the washroom all day. I thought it might be an infection, but it seems to get better for a few hours and then starts up again. Does that sound like the issues you had?

dtad · May 2016

stellamaris.....so sorry you are dealing with this. I have a condition called interstitial cystitis which is negatively affected by lack of estrogen. You should first get tested for a UTI. However if its negative you should see a urologist. There are things you can do to lessen your symptoms. Good luck and keep us posted....

MargoChanning · July 2016

I'm reading all of your comments with great interest. I believe my cancer started in perimenopause; I had a needle biopsy done on the breast that eventually developed a cancer (more than 10 years later), and I think now that there was a minor tumor then just beginning but hard to confirm. I was on HRT after menopause, started about 2 years after when I'd started having chronic insomnia (which lead to poor job performance and anxiety about losing my job in my 50's), and what turned out to be urogenital atrophy, leading to UTI's after sex every time. My oncologist has allowed me to continue using testosterone since diagnosis, as well as vaginal estrogen, even before the recent research determined it was not a risk. I had to stop using the testosterone, however; once I started an AI (first Letrozole for a year, then Anastrazole for 2 years, now back on Letrozole) I started having undesirable side effects including a slight enlargement of the clitoris. Apparently when it was completely unopposed by estrogen, even the very small dose I was using was having magnified effects (which explains why body builders use AI's short term for maximum effect). I'm still using Vagifem but the reduced dosage (by the FDA) to 10mcg 2x weekly is not enough and my gyn prescribes Estrace vaginal cream as I had developed UTI's as well as vaginal tears during sex with just the Vagifem. I had developed osteoporosis at the end of my initial treament (before starting AI) and took one dose of Boniva which lead to 4 months of back/neck/head pain. I researched and found an article written by 2 Canadian doctors who determined a protocol of OTC supplements that had the same effect as bisphosphonates. I started on those in 2013 and a scan earlier this year showed the osteoporosis has reversed.

I would love to see someone start a research project with women in their early 30s or 20's, capturing their hormone cycles and amounts and then starting to supplement those hormones when they start to decline, in the amounts needed just to duplicate their previous healthy levels. I wonder if there would be any deterrent to cancer, as well as these other late in life diseases.