Why wont they give me ESTROGEN?
Hi,
I was diagnosed with triple negative IDC at Stage 2b in June 2008. I'm also BRCA1+. I had neoadjuvant chemo and then a bilateral mastectomy as well as an ooph. I took all the precautions.
Both pathology reports showed no cancer.
I am only 35 years old. I have a wonderful husband who was my rock through this entire ordeal. I love him dearly, but our sex life is really suffering.
WHY WHY WHY am I not allowed to get some estrogen if I removed Everything?
I don't understand it. Why can non triple negative women take hormones? Wouldn't the hormones increae their risk of cancer too?
Please can someone explain it to me?
Thanks,
Ninel
Comments
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Ninel:
Based on what you said, I'm assuming your having the symptoms of low estrogen: lack of desire, dryness, etc. which is why you want estrogen, but estrogen after breast cancer is risky no matter what kind you have. I am a social worker in a breast cancer center, not a doctor, but I can tell you we have seen cancers later in life that were Estrogen-receptor positive even if the woman's first time around (years before) was ER- or triple negative like you. I'm not trying to scare you, and I assume you are getting this answer from your gyno. Maybe you could get a second opinion, or maybe there are other things you could try such as more sex play, lubricants, more cuddling, whatever, be experimental, figure out things that work for you and your husband.
People with ER+ cancers have to take estrogen inhibitors for five years after so their body will not make any estrogen, same with PR+ folks, so whoever told you they get to take estrogen is wrong. Like I said, I'm not a doctor, but you might seek out a second opinion. I hope this helped.
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Thanks for your response jjhuntt,
When you say you've seen cancers later in life...are you referring to other cancers besides Breast and Ovarian?
I ask becuase I removed my breasts and ovaries.
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I'm sorry. Let me clarify. We've seen ladies who had triple negs. in their forties and beat it, but now are in their 60s and 70s. Back then we didn't have BRCA testing and std treatment was mastectomy (usually one side or the other). Now we have a lot more info and much better testing. You made the very brave and wise descision to go for prophylactic surgery procedures, so you probably will not have any recurrences (I'm 41 and facing this decision, but I'm in chemo right now, and I don't have BRCA). These ladies from the 80s didn't have oophs or only had mast's on one side. Now to your question, it's that BRCA positive status as to why they won't give you estrogen. They just don't know what kind of effect giving you estrogen might have, so they don't take any chances.
The ladies had "new" breast cancers because now they are post menopausal. It came back in the other breast as ER+
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Good advice and clarification. As Ninel....i am triple negative, have though no mutations in either BRCA only a insiginificant variance in BRCA 1 that they cannot determine or clarify further and most cases is a benign issue? MY need for estrogen is so desired and understand the safety of not recommending this. I am older than Ninel.. and cannot imagine how you are feeling as it is a challenging and sometimes not a good quality of life . I tried a over the counter RX, Replense and helps in the dryess and helping for intercourse. Goin into a chemically induced menopause has been more of a ordeal than a bilateral mx and chemo combined. Actually makes me angry that my quality of life is gone. Chronic insomnia, tiredness and my vitality is gone. I have joint pain that i am quessing is from no estrogen also. IT is not that i am nof grateful to be ok and cancer is out.. but my life is just way too changed for me to say it is all worth it.
Take good supplemetns, excercise and do yoga. I just feel for you NInel.. and what jjhuntt says it is ALL true, but it is hard to understand and not sure if Drs could live like this if they knew how altered our life is. Thanks for the post and sorry i rambled on but it is very real for me too!!
Sister in Pink,
Donna
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jjhuntt...ALL the BEST in your treatments and for your candid and accurate advice!!!!
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What is replense?
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Nine - talk to your onc about an estring or femring. It's placed in the vagina and releases a small amount of estrogen directly to the vaginal tissues to plump them up, moisturize them, and give them some elasticity back. While some of it gets into your system, the amount is extremely small. Yes, it's a risk. But I'm even ER+, but I'm willing to take a calculated risk (with my onc's guarded approval) to use an estring. It's extremely effective - as a matter of fact, it's been a miracle.
I'm on an aromatase inhibitor to prevent my body from making any estrogen, but this came down to a quality of life issue for me. I made the decision to do this as I was unwilling to give up my sex life and so accept the risk. Everyone is different and others might make a different decision. Work with your gyn and your onc and see what they can do to help you.Cancer takes too much from us for us to allow it to take that as well.
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Ninel...it is for vaginal dryness and you can get this at Walgreens or any over the counter drug store. It is a tube of cream and will be inserted by a syringe type thing and do this every three days. Intercourse was almost impossible for us and has improved with this. Google it also as my OB/GYN recommended .It provides internal mositurizing and is estrogen free.
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Hi Ninel,
I just started using Vagifem intra-vaginal tablets. You place them once a day for 2 weeks then twice a week....for how ever long you want to be active. I was also presribed Estrace cream for the external area during the first two weeks, only. My med. onc. totally approved of this plan, he is very well known in the BC world.
We had satisfying results after the first week. Even had the big O! Didn't address the libido issues, but I am hoping with more intimacy in my life, that will pick up.
My gyn (who is not a gyn onc.) told me that my friend who is reluctant to have her ovaries removed who is BRCA positive should be told that she can use estrogen after her ovaries are gone! so I might get another opinion. We are ER - so we can use estrogen prudently.
Good luck,
Kathy
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Good info kathy!!! Will be seeing my onoclogist next week as my first follow up since chemo and know she will be informative to my ovary being pretty much gone. They want my ovaries out and i say why?! I have no mutations and have had enough taken away this year. ALL of this is such a ongoing jounrey and to know that my hormones are so off the chart right now, can only take these tibits of infor from everyone and see what is best for me.
Donna
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Hi, I didn't look through all of the posts here but I am confused by Ninel's post, Ninel: didn't your oncologist ever explain it to you?
Non ER negative women (ER+ women) are taking hormone treatment, not hormone.......hormone treatment is to REDUCE the hormone in their body because their cancer cells rely on estrogen to grow, the stronger ER+ is, the more cancer cells rely on estrogen to grow, eg. some women are ER 30% some are 90% but they are all ER+. And Hormone treatment will benefit them, incl. taking drugs, ovarian suppression or removal, these are all hormone treatment to reduce/stop the estrogen in their body
For ER negative women, ER should be below 25% or even 0%, which means their cancer cells do not rely on Estrogen to grow. Hormone treatment would not benefit much but chemo wil.
Hope it helps. Or I misunderstand Ninel's question
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hlya, I think you misunderstood Ninel's question. I think. I understood her to be asking if she couldn't have a little estrogen to restore some quality-of-life following her oopherectomy...
What kmartin and NatsFan said about Estring and VagiFem is more along the lines of what I was thinking, in answer to Ninel's question. These deliver very low-dose estrogen directly to the vaginal tissues. I use Vagifem myself -- as I have to say to the pharmacist EVERY TIME I refill my prescription: "Yes, I'm aware of the risks, yes, I'm aware that your guidelines say it's contraindicated by my taking Aromasin, but it's a quality-of-life decision between me and my oncologist."
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Oh, now I understand.....I misunderstood her question. I will delete my post. Thanks
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Natsfan...Good info.. i meet with my Onocol. in two weeks and will ask her on Estring. I am triple negative and just don;t see her budging on any kind of help!I am also for quality of life as there is just too much i am challenged on because of a chemically induced menopause. Need some relief!!! Thanks for this tibit of info!
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My oncologist was very understanding about quality of life issues re Vagifem. It's a very low dose. I'm not sure, but the Estring might be deliver a higher dose since it stays in there longer. I've heard that some oncs can be very rigid, whereas I see it as an informed decision. I honestly would consider changing oncs if she won't work with you on this.
At the risk of sharing too much information, I can also highly recommend a lubricant called Liquid Silk. It doesn't get sticky and a little dab will do ya! <blush> Found it on drugstore.com.
--CindyMN
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Cindy...thanks!!! It this Vagifem.. a RX by dr? Will ask her on this as i see her for my first 6 mo check up!
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Vagifem and Estring both require a prescription. If you are already taking Tamoxifen or an AI, it's best to get the same doc to prescribe the Vagifem or Estring -- as I mentioned above, pharmacies/insurance companies will want to have an okay from your doctor(s) that the doctor knows you are taking both a systemic anti-estrogen and an (itty-bitty) estrogen suppository, and that you have been informed that "there is a possible contraindication" between these two types of drugs.
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We triple-neg girls don't have to worry about that contraindication because we don't get to take tamoxifen or AIs. Vagifem is a tiny pill that you use kind of a plunger thing (about the size of a cheap Bic ink pen) to insert in your vagina. I'd initially asked about some low-dose estrogen cream but my onc said the pills were much less messy. And yes, it's a prescription.
It didn't take long for me to see a big improvement!
Hmmm...just noticed in an earlier post that you still have your ovaries. That may change things, in terms of your onc being helpful about this. My ovaries were already gone (for a non-cancer reason) before I got BC. So perhaps my situation was less complicated than yours.
Still worth talking to the onc about it, though.
--CindyMN
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Hi Cindy,
So you too don't have your ovaries and had mastecomy? And your oncologist was ok with giving you the Vagifem?
I have my regular oncology appointment this coming thursday. I want to bring this up with her. I still dont fully understand why they refuse tgive us any estrogen. I'm triple negative. The tumor wasn't affected by estrogen and have since removed all breast tissue and ovaries. So what are they still afraid of? Am I missing something?
Ninel
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Ninel,
A friend of mine who was dx with TNBC, is BRCA1+, had a double mastectomy, hysterectomy, and oophorectomy, commented one time...they have removed all my body parts...what next...my head? Even after all these organs are removed, the adrenal glands continue to produce estrogen, progesterone, steroids....
http://www.nlm.nih.gov/medlineplus/ency/imagepages/8719.htm
There is not a reason in the world that a woman dx with TNBC or BC+ cannot have hormone therapy, as long as it is BHRT. This friend is on BHRT as is my daughter Lori who was also dx with TNBC. It is a matter of locating a doctor (antiaging) who is willing to treat you. The body requires all of the hormones to function properly, and it is only when the hormones are not balanced that we develop many diseases.
Ninel, I apologize for not replying to your email on this subject, and I promise I will send you all the information on the antiaging specialists.
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Thank you Nancy.
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Yep, Ninel, I've got no girly parts left either. <grin> No uterus, cervix or ovaries. Plus bilateral mastectomy. With the triple-neg status, I can't imagine that your onc would refuse you a Vagifem prescription. From what I've read, the Vagifem pills may be a little "safer" than the Estring, which stays in your vagina for three months.
With Vagifem, you usually put one pill in your vagina every day for two weeks (I think) and then you drop down to twice a week. I've tried to wean down to once a week, but the dryness and pain gets too bad. I know other people who eventually didn't need the Vagifem anymore. Not me.
Make sure your onc knows you're talking about Vagifem, a tiny pill you put in your vagina, and not regular hormone replacement therapy (HRT), which is a pill you swallow every day or a patch you wear all the time. I honestly would change oncs if she/he won't work with you on this.
This is a quality of life issue. There are no guarantees that any of us won't get cancer again. You're a grownup and should be allowed to weigh the risks and make this choice. To me, it's a small risk for a big benefit.
--CindyMN
PS Just re-read your initial post. You being BRCA1+ probably changes your risk profile. But you're only 35, I'm 51. If my onc thinks *my* sex life is important, yours should be even more so.
You might post a question about this in the discussion group for young women with BC. They may have more ideas, too. -
Cindy,
Being BRCA1+ is the reason I had all these surgeries. But again...I dont' understand what recurrence are they are worried about IF I did have these surgeries?
Ninel
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Ninel:
Perhaps I'm misunderstanding your words, but it sounds like you're thinking that now that you've had these surgeries, you have no chance whatsoever of ever having a recurrance or mets. And that's not true. I don't think anyone, men included, has absolutely no risk of breast cancer.
I, personally, have had two different types of breast cancer, so #2 wasn't caused by #1. I didn't test positive for either BRCA mutation, but there's probably more BC genes to be discovered. In 2005, I had one mastectomy. In 2007, a new tumor developed in my other breast.
All I know is that my breast tissue must like to make cancer. Even after bilateral mastectomies, there's still a tiny bit of breast tissue left behind. Having two mastectomies has reduced my chances of another primary tumor tremendously. But not completely.
And, even though I had chemo twice, some stray cancer cells might have survived. Chemo dramatically reduced the chances that I have any cancer cells left in my body. But mets could still happen. My risk is less, because I had chemo, but the possibility still exists.
Each person has to weigh the risks and benefits of every treatment decision. For example, chemo has its own risks and sometimes a tumor is too small to warrant putting someone through the potential long-term risks of chemo.
I honestly don't know if the Vagifem would increase your risks of developing another tumor somewhere. I really doubt it would, but I don't KNOW for sure. Probably nobody knows for sure. But your doctor should be able to tell you how much extra risk (if any) she thinks it might cause. Then you can make your own decision about whether the benefit is worth the risk.
Keep in mind that nobody is risk-free. You just have to pick your way through the maze the best way you can with the information you've got. IMO, the more information, the better!
--CindyMN
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Ladies
My doctor suggests me to take all girly parts out as well. I wonder how long the healing time is? Anyone can share some light?
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Cindy,
What you say does make a lot of sense.
Thanks for the explanation.
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Newalex:
Depends on whether they can do it without putting a huge incision across your abdomen. Most women who have had children can have it done vaginally, so no abdominal incision. Sadly, I had to be cut along the bikini line from hip bone to hip bone. My scar is more than a foot long. That surgery takes at least six weeks to recover from.
Nowadays, I think they also can do it via several small incisions in the abdomen. My hysterectomy was done in 2003 and that wasn't offered as an option to me. Check out the online support group at hystersisters. Great bunch of ladies!
--CindyMN
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Glad to help, Ninel.
--CindyMN
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Well, I'm back from my visit with my oncologist. She was totally ok with prescribing EString. She made my day. She said the estrogen is local and doesnt get released into the blood stream.
Thanks everyone for all your help.
Ninel
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I am SO glad for you! It should help tremendously. So nice to hear your onc was cool with it.
--CindyMN
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