Breast Cancer and PCOS

ChemicalWorld

Wondering if there is anyone else out there who had polycystic ovarian syndrome prior to their breast cancer diagnosis?  I was diagnosed in my early 20's and was on the highest dose of Aldactone for ten years prior to my cancer diagnosis.  I have since gone off that medication after reading links between Aldactone and breast cancer in mice (and also in male patients taking the medication).  Not saying it caused my breast cancer, but it may not have helped.  I also went off it because I didnt want anything else messing with my hormones.  From what I've read, women with even a family history of breast cancer shouldn't take this drug. 

The diagnosis of PCOS in conjunction with chemo-pause and Tamoxifen also lead to my gynecologist telling me that my risk for endometrial cancer is that much higher (it's already elevated with a PCOS diagnosis, due to lack of periods and such).  I may be likely to have a hysterectomy at some point. 

Problem is, any treatment they give you for PCOS symptoms is typically hormonal based, and a big no-no with a history of ER+/PR+ positive breast cancer such as mine. 

One positive thing to come from it though, it helped me get on Metformin.  My hospital had approached me about taking part in a study for Metformin, but I only had a 50% chance of actually getting the drug.  After becoming aware that it could help, and knowing that Metformin has for years been prescribed for PCOS, I was able to have a conversation with my gyno and was easily put on the drug. 

Mzmerz

I have PCOS.  The BC diagnosis came as a shock.  I honestly expected to have ovarian cancer, colon cancer or esophageal cancer, not BC.  I had taken Clomid to get pregnant and there is a risk for that, but that was 17 years ago.  Colon cancer because I have IBS and just the weirdest digestive issues ever.  Esophagus cancer because I have an uber amount of stomach acid.  

When my onc suggested a hyster/ooph, I was all over that. I did not want to get uterine cancer from the tamox.

I had taken Metformin for several years before BC dx and it didn't help.  I was pre-diabetic/insulin resistant.

I also have Fibromyalgia.  I'm basically a mess. LOL

apriltears

Have either of you two been on Depo Provera?

Mzmerz

No, but I had the Mirena, which I am convinced attributed to my BC.

bevin

HI, I have/had PCOS as well.  I also was on spironolcatone for about 17 years and I'm still on it . I'm young still and my Oncologist says it is fine for me. I have high levels of dheas and testosterone that the spironolactone controls. Recent studies have shown there is not a link between BC and spironolcatone.  Here are two for you to read. Let me know what you think and I hope this information helps.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3315877

Another study of 1,475 i/ndividuals prescribed spironolactone and followed for 3 to 7 years reported nine cases of breast cancer compared with an age-specific rate of 8.3 cases.34 Another study showing similar results based on data from 461 person-years during three years of follow-up after spironolactone exposure demonstrated no relationship between spironolactone use and breast cancer.31 Five case-controlled studies have also shown no overall increase in the relative risk for breast carcinoma.35 The data suggests that there is no definitive documented association between breast carcinoma and spironolactone ingestion after more than 30 years of spironolactone availability in the marketplace.36

http://www.bmj.com/content/345/bmj.e4447

Results Index dates for study patients ranged from 1987 to 2010, and 29 491 new cases of breast cancer were recorded in the study population (incidence rate 0.35% per year). The exposed cohort of 28 032 patients and control cohort of 55 961 patients had unadjusted incidence rates of 0.39% and 0.38% per year, respectively, over a mean follow-up time of 4.1 years. Time-to-event analysis, adjusting for potential risk factors, provided no evidence of an increased incidence of breast cancer in patients exposed to spironolactone (hazard ratio 0.99, 95% confidence interval 0.87 to 1.12).

Conclusions These data suggest that the long term management of cardiovascular conditions with spironolactone does not increase the risk of breast cancer in women older than 55 years with no history of the disease.

Anonymous

I have PCOS. I was misdiagnosed and undiagnosed for over 20 years.



Was on a low dose of Metformin for about 4 years prior to my bc diagnosis. It made a world of difference with my PCS symptoms.

ChemicalWorld

@bevin, my testosterone levels never tested at high, so for me, that was another reason I felt I didn't really need it.  Everyone has to do what's best for themselves.  I went to a gynecologist for advice on it and after doing his own research, he agreed with my concerns and felt I shouldn't be on Spiro.  And even at 200mgs a day it wasn't fully controlling my symptoms.

I do know that Spiro causes breast changes, aside from BC.  Breast enlargement can be a side effect and that did happen with me. 

The only other PCOS-related medication I was ever on was Diane-35 to regulate my periods.  Was only on it a couple of years though.  Started to have blood pressure issues in recent years that prevented being on birth control.

bevin

Hey Chemicalworld- yes agree - you need to do what is best for you. I just thought I'd share the latest research. 

The biggest reason I was on the spirono was the high dheas and high testosterone. I had horrible acne, hair growth and male pattern baldness. I did start out at 100 mg 2x a day, it took about 6 months to bring my symptoms and levels into near normal. Then I went down to 100 mg 1x a day.

I guess I was lucky as I only had the intended side effects from it to reduce those symptoms.

PCOS is awful and the biggest thing it robbed me of was fertility.

I really feel for you especially if you have no symptom reliefe. I hope you're doing better and find something to control your symptoms.  I wonder if it would be worth it to check into a naturopathic doctor? Sometimes they have other things up their sleeves that could work.?

Just a thought for your consideration.

Good luck

ChemicalWorld

Thanks bevin.  I do see a naturopath (should say did as I haven't seen her in a while).  She was unable to offer much specific to the PCOS, as the herbs they I guess would typicaly offer, like saw palmetto or what not, affect hormones.  She really didnt want to touch that. 

I am using Vaniqa right now and that is the only PCOS-specific thing I use.  Fertility was never a front and centre issue for me because I had never actively tried to have a baby, life just didn't work that way for me, and needless to say, any last considerations for that went out the window  with the big C.  But, especially between my teen years and through my 20's (which is when I was diagnosed with PCOS), I had major issues with periods, often going close to a year without one.  Then I hit my 30's, started to gain some weight, and oddly while my periods regulated, they got painful and worse, and the whole hair problem thing too (one of the few positives to chemo was not having to deal with that).  Doctors were really resistant to Metformin at the time because my blood sugar was normal in their eyes.

I guess I've always considered, despite symptoms, that Ive had a "milder" version of the syndrome.  There are many variants of PCOS I think, so some things work for or are more necessary for some rather than others.  Even my sister, who also has PCOS, has had different symptoms than myself, hers were worse and around longer, and even still she was on a lower dose of Spiro.  Go figure. 

Thank you for posting the research btw (I forgot to say that). 

Chloe2

Hi everyone, I have PCOS as well. was diagnosed at age 20 and have been on the pill since then (I am 47) until I was diagnosed with DCIS in February. I too am ER PR + and had to stop the pill. My breasts have been sooo painful the last few days which is causing the lumpectomy site to feel just terrible. Have discussed having my ovaries out but I am in limbo waiting for my brca test. I have not heard of many of the drugs you mentioned, although I did take clomid & various meds prior to IVF 15 years ago.

karij

Hello! I am not sure if I am fit to participate in this conversation, but can you please read my post that I recently submitted? I had a question re: breast pain I have recently noticed. My breast pain is off and on. It is around my breast and travels to my lymph nodes. It is around my arm pits more. I have, in the past, been diagnosed with PCOS, but I also have a seizure disorder and was on Depakote for many years. They believed the PCOS was apart of the side effects from Depakote. I learned of this diagnosis when I tried to have my 1st baby, of which I did eventually get pregnant with, and have a beautiful girl. She's 4 now. I am almost 34 years old. I could not get pregnant for years and years. They were never sure if I was exactly PCOS, though, as I did not fit all of the symptoms. I did have the acne later in life like mid 20's and still do. I was skinny. Hair growth was not my problem. Although, skinny, I did gain weight, but obesity was not an issue or a symptom that they felt classified me as a traditional PCOS case. I had irregular cycles for many many years since my teens (14+), sometimes I did not get periods for 6 months-overall horrible menses issues, cramps, passing out. I never had the hair growth issue. Insulin sensitivity, if that is what they call it, could have been an issue for me as I do crave my carbs, but I have no suspected thyroid or diabetes disorders. Now, I am on levetiracetum and lamictal for my seizures, and I have regular periods, but cannot get pregnant and have breast pain that alarms me.My basal body temps are usually low, though, and I know there is something going on with my progesterone and estrogen levels. My mom has stage IV ductal carcinoma estrogen receptor positive breast cancer. I was, though, on fertility drugs for a time in which side effects were possible cancer. I was on birth control for many many years up until 2005. Right now, doctors are saying it is probably PCOS again, but lets wait a little longer.-just not a traditional case. How traditional was your case of PCOS? Did you have breast pain and can you tell me a little bit about that? I know this is a bit all over the place, but I can tell you this... When I went through fertility treatment, nothing ended up working and was on clomid, lots of other drugs, metaformin was somthing they had me on temporarilly at one point, but I would have to go through all my notes to get specifics. Eventually, after stopping for a year, and my periods becoming irregular again, I took estroven, an over the counter menopausal medication. I took it for no more than 2 months-3 months. A woman with PCOS on a blog I found,and me being desperate to get pregnant, led me to try it. I do not know if I should have, but I did research and I learned a few months would not hurt. I am pretty well-read so rolled with it. I did get my period. I did get pregnant. My 1st mammogram was ok. My next is not until age 40. I have had 2 abnormal pap smears, but the last looked ok. The doctor said it was not a concern at this time.

Anonymous

I was undiagnosed/misdiagnosed for probably 25 years. I did have hair growth issues and some acne in my 20's. Periods were always regular, though I found out when we were trying for our second that I was not ovulating. Very painful, crampy periods. Very sore breasts for a week before my period. Never overweight except during my 2nd pregnancy. I even had trouble with cysts. But I did not "look" like a typical PCOS patient and my bloodwork did not fit either. I was finally diagnosed by a reproductive endocrinologist. He listened to my symptoms then looked at my old ultrasound pics and saw the very classic signs of PCOS that everyone else had overlooked or denied when I asked. My treatment was so simple and made such a difference!! I take 500mg of Metformin 2x daily and eat a low carb (but HEALTHY carbs!) diet.

I have NO idea if any of that info is helpful to you! Keep asking questions and try a reproductive endo if you have not yet.

JWoo

Hi all

I have it as well- was on birth control from age 12-30, then started on metaformin. I quit taking it after about 3 years as I was tired of having the runs all the time. I decided to try more natural options. Lots of mint tea, cinnamon, and soy, and have been a vegetarian for almost 20 years now- which really helped control my PCOS. Now I am started tamoxifen next week and now I have to find a replacement for proteins, as there are a TON of things (nuts, beans, some veg, spices, vitamins, minerals, etc.) that may or may not affect the effectiveness of tam. Who knows how the tam will affect the PCOS? I am pretty nervous.

JWoo

bump

coraleliz

JWoo-I was afraid to take Tamoxifen at first. I was diagnosed & undiagnosed & re diagnosed with PCOS over the years. One doctor told me it was the "diagnosis de jour"  (he undiagnosed me). The last time I looked up PCOS, the definition was really broad & I'm suprised there are women it doesn't fit.

I definitely had the irregular periods, hair, acne, & infertility issues. I've always been thin, so some docs excluded me from that reason.

My concerns as far as taking Tamoxifen were mainly based on how poorly I did on birth control pills & infertility drugs. My hormones just didn't like being messed with!!!!  I have been on Tamox for about 3 years. Here's a run down of the GYN issues it's caused me. I've developed 2 fluid filled cysts(4.0 cm & 5.0cm). Both resolved on their own. I've had surgery(hysterectomy/polypectomy/D&C) twice when I developed polyps & my lining became really thick. I was also became VERY PMSy during these times & the surgeries brought me relief from that as well. My periods have mostly stopped but sometimes will break through.

This is no where near as poorly I did on birth control pills or infertility drugs. I'm hoping to hang in there for 2 more years.

ChemicalWorld

JWoo sorry to be late in my response, but I was also a vegetarian leading into treatment (I have re-added occasional seafood to my diet due to protein concerns and B12 deficiency), and ditched the soy as well.  During treatment, I learned how to make seitan and love it as a protein substitute.  Much cheaper and tastier than the store bought stuff out there too.  

I take Metformin and am also getting a bit tired of some of the stomach problems too, but now I'm afraid to go off it (yay hangups!).  I think it is likely contributing to my B12 deficiency too.  I was a vegetarian for 11 years prior to diagnosis, always had great bloodwork. B12 went down a little after chemo, then really went down this past year or so.  Have been on Metformin since 2012. Am now having B12 shots. 

I'm also now on Lupron shots, in addition to Tamoxifen, so I'm sure my body is reacting to all sorts of things.  I got all excited when I read somewhere that Lupron helps with some PCOS symptoms but it has not with me.  Still early days though.

Calandergirl

Hi! I was dx with PCOS when I was 15. I was automatically given birth control pills and was on them for about 4 years. At 19 I was put on Spiro and stopped taking that when ttc. I have also been on Metformin the entire time after dx. I have type 2 diabities, high bp, and cholesterol. I also have OSA (obstructive sleep apnea). I've had issues with pap smears in the past but I didn't think I'd be having issues with my breasts. I, too, always thought the uterine cancer would be my dx. I have a mass on the right side which is getting biopsied tomorrow. As always, hoping for good results, but I know I'm a very strong fighter if here are any issues.

Take care and good night

Loving_Mom

I found this thread while searching on google and wanted to add my experience in hope that someone may find it helpful.

I too was diagnosed with both PCOS and BC. I too was on birth control, the mirena, and I'm certain that it has contributed to my BC, PCOS and a handful of other symptoms. I managed to treat myself on my own completely naturally and get pregnant again. This is what I believe helped me the most:

- I removed my mirena and stopped all birth control

- I changed my diet to a zero sugar diet, replaced all simple carbs (bread, pasta, potato) with complex carbs from gluten-free grains like wild rice, buckwheat and quinoa, added fats and oils like coconut oil and raw butter or ghee, and ate only clean healthy food, no gluten, and replaced dairy with fresh colostrum and raw butter.

- I detoxified heavy metals from my body. I got tested and found out I had a high load of heavy metals (mercury specifically) in my body that was also contributing to many of my problems. This was the thing that made the biggest difference to me.

- I also got tested and my estrogen levels were through the roof, while my progesterone was rock bottom low. I Took a few supplements that lower estrogen in the body and help with estrogen dominance. like iodine, I3C (indole-3-carbinol), and topical magnesium, and started taking natural progesterone cream to help with my progesterone levels.

- Applied essential oils topically over my ovaries everyday, multiple times a day.

These are some of the resources that helped me the most:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3654245/

http://detoxscientific.com/pcos-diet/

http://thesupermandiet.com/detox

http://amandashealthjournal.com/quicksilver-mercury-detox-my-first-three-months/

Calandergirl

I just wanted to touch back - my original biopsy came back with 8 of the 9 samples with little to no cell change. There was, however, one that they wanted to keep an eye on and it was recommended that I check back in 6 months from that last mammogram to find out if there is any change. And as normal they had put a marker in the spot they biopsied. Now 3 days ago my breast, in the spot that was biopsied, started to feel like I was stabbed and the needle wasn't removed. The pain has neither gotten less or worse. Along with this I've been unable to keep anything in my system despite all the meds they've had me try. I was hoping that my doctor would have called me back yesterday, but that was not the case and now today is her off day.