I WANT MY MOJO BACK!
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I am 15 months post final chemo. I STILL don't have a lot of feeling in the clitoris area. That said, I still don't have my taste which is a nerve issue--the nerves from my taste receptors to my brain have been damaged and I was told it could take 18-24 months to repair. My question--is the clitoris also a "nerve problem" from chemo or a present from forced menopause? Does it come back??
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Pamela,
It may be a nerve problem and hopefully, like taste, it too will come back. I will say that I was already in menopause when I was diagnoses and that was not a side effect of menopause for me but now on the AI's it does take me a bit longer to be satisfied.
but better late than never I say. 
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Pamela doesn't list an AI or Tamoxifen as something she is taking. That would certainly make a difference. My gyn told me it takes at least a year to recover from chemo on all fronts. Maybe some things take longer. My MS makes it hard for me to judge. Nerve issues are always a problem.
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You are correct Jaycee, I leapt to that from her reference to forced menopause. my bad
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I used to follow this thread and then I stopped because it seemed that despite tamoxifen, my vagina was working just fine, a dried up prune kooch seemed to be the one side effect I had happily avoided.
Then we had one evening of intimacy and I thought, hmm, that feels odd. That feels ... awful. Instead of that nice, comfy finger in glove or foot in well made Italian leather boot feel, like everything was where it should be, it felt like someone was jamming a rolling pin down my throat. Well, not my throat. I thought it was a one time anomaly and next time things would be fine again. Wrong. So wrong.
Now during sex, instead of being 'in the moment', (who the hell am I kidding, I haven't been in the moment in years!) instead of being vaguely involved I am instead completely distracted by vaginal sensations that feel like a kid on a violin sounds. Hub is doing his thing and I'm wondering when it's going to be over because if this is sex, I can live without this shit.
I am highly PR and ER positive and probably should not have any estrogen anywhere near my lady bits. But once when an annoying gland flared up I walked around in utter misery for quite a while before I decided, to hell with this, and applied a tiny blob of Premarin. Which IMMEDIATELY cleared up the problem. It was then I decided that while using estrogen cream might put me at risk for more cancer, NOT using it puts me at risk of dying after years of sexless existence. Pick one. Neither is a good option. So I have decided to split it down the middle. While I have not used estrogen cream beyond that once (since being diagnosed with breast cancer) I have decided if I need it once in a while, I am using it. Without consulting my Onc. It's not his sex life and intimacy down the toilet, it's mine. And in an office it is easy to gloss over and ignore the real life impact this can have. I do not think it is advisable as a long term thing. I will only use it if once every few months fixes the problem. If not, then I have to find a plan B. But I am certainly prepared to give it a try. Still waiting to see if our next encounter feels like a hockey stick being smashed around inside a toilet and if yes, will self prescribe a blob of Premarin. If that doesn't work, I don't know what I'll do.
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oh, runor, today is poem in your pocket day, and I am absolutely enthralled by your similes and metaphors. Sorry the v jay jay is uncooperative. I know just what you mean, unfortunately.0
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runor, unfortunately, I know exactly what you mean.
My first onc agreed to my going on vagifem, but it was never as good as you are saying premarin is! I gave up the vagifem since it wasnt worth the the added risk, or the money. My current onc is not in favor of anything but non hormonal approaches. If you are interested in trying, - you may do well with Hyalogyn and coconut oil. It does help!
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Runor - I so relate! Felt like a cheese grater. My breast surgeon oncologist, my MO, and my GYN - all agree that using an estrogen cream is ok. I use Premarin twice a week - has made such a huge difference They all feel thar a very small amt of estrogen is absorbed into blood stream They all saiid the key is using it twice a week so the tissue stays estrogenized ... when you go for longer periodS .... the more you will absorb. Hope things improve for you soon$
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I use compounded Estriol suppositories PLUS Bioidentical Progesterone capsules. The Progesterone is naturally Antiproliferative. Naturopaths give both all the time together. Much, much safer. Decreases abnormal uterine growth and decreases breast growth. Now artificial compounds called Progestins are another story, they actually cause cancer. Artificial Progestins are one of the main reason Hormone Replacement Therapy caused so many Post Menopausal woman to have Breast Cancer.
https://www.nature.com/articles/nature14583
Solving a breast cancer mystery – why do 'double-positive' women do better?
Category: Science blog July 8, 2015 Emma Smith16 comments
Dr Jason Carroll working in his lab
When a doctor suspects a woman might have breast cancer, one of the first things they do is take a small sample of cells from her breast, called a biopsy, for tests.
The cells in this tiny tissue sample carry answers to crucial questions about what happens next. First and foremost – is it cancer or not? If it is cancer, has it started spreading? And how aggressive it is likely to be?
The levels of different molecules within these cells also yield information about cancer's nature – and in breast cancer, one of the most crucial for helping guide treatment is the oestrogen receptor (ER).
Women with high levels of this molecule in their cancer cells (called 'ER-positive' breast cancer) benefit from hormone therapy – drugs that either lower their oestrogen levels, or prevent cancer cells responding to the hormone. About 7 out of ten women have ER-positive breast cancer.
But there's a second molecule – the progesterone receptor (PR) – levels of which inside breast cancer cells also seem to be important. Doctors have known for a long time that women with high levels of both the oestrogen and progesterone receptors ('double-positive') have the best chance of surviving – they respond better to treatment, and their cancer is less likely to spread.
But these 'double-positive' women are given the same hormone therapy as those who have no progesterone receptor in their breast cancer, so doctors don't always routinely test for this second molecule any more.
Until now, it's been unclear why having high levels of both molecules is good news for the patient, or what benefit testing for progesterone brings.
But thanks to Cambridge-based Cancer Research UK researcher Dr Jason Carroll and his team, and their colleagues at the University of Adelaide in Australia, there are finally answers to this mystery.
Today, they've published surprising results of a study in the journal Nature that finally solves the puzzle of why 'double-positive' women do better.
And if their findings are confirmed in follow-up studies, it could make a big difference to how women are treated.
How do the ER and PR receptors work?
Only certain types of cells that respond to hormones make these receptors – for example breast, ovary and womb cells.
Both receptors are directly involved in switching genes on and off – they're called transcription factors.
When oestrogen and progesterone are present, these hormones physically stick to their respective receptor, causing them to move into the nucleus of the cell, where DNA is housed. They can then attach to specific regions of our DNA and turn genes on or off, changing the cell's behaviour.
When breast cancer develops, the tumour cells become overly sensitive to oestrogen. When oestrogen activates the oestrogen receptor, it turns on a panel of genes that tell the cells to keep dividing, driving tumour growth:
But what happens when breast cancer cells have a working progesterone receptor too? Dr Carroll and his team set out to find out.
The first hint
The first piece of the jigsaw fell into place when they looked at the physical relationship between the two receptors. Using 'double-positive' breast cancer cells grown in the lab, they made sure the cells had sufficient oestrogen and progesterone to activate both receptors, then they cracked the cells open.
When they used a sophisticated method to 'fish out' the progesterone receptor from the resulting mixture, they discovered something unexpected: it was physically stuck to the oestrogen receptor. This was a strong hint that progesterone – via the progesterone receptor – was somehow affecting how the oestrogen receptor works.
Using the same lab-grown breast cancer cells exposed to oestrogen only, the researchers used cutting-edge technology to pinpoint the sites in the cells' DNA where activated oestrogen receptor attached – hence which genes it was controlling.
But when the scientists then added progesterone to the cells too, it caused a rapid shift in the points where oestrogen receptor attached to DNA.
At least 470 genes were controlled differently when both hormones were present compared to just oestrogen alone – the progesterone receptor was, in effect, 'reprogramming' the oestrogen receptor, changing the genes that it influences.
But, most crucial part was the overall effect this on the cancer cells themselves – progesterone seemed to cause the cells to stop growing as quickly.
By changing the genetic 'programme', the progesterone receptor was applying the brakes to the cells' growth.
Seeing is believing
The cells used in the above experiments are based on tissue samples taken many decades ago, and kept artificially growing in a lab (called 'cell lines'). These are a good starting point, but it was important to show this 'ER reprogramming' actually happens in human disease.
So the team turned a special technique developed by scientists in Professor Wayne Tilley's laboratory at the University of Adelaide in Australia. This allowed small samples of tumour tissue to be removed from women with breast cancer and grown in the lab for a short time.
Remarkably, the team saw exactly the same effect – adding progesterone at the same time as oestrogen slowed down the rate tumours grew.
They also saw exactly the same phenomenon in mice transplanted with human breast cancer cells: oestrogen fuelled tumours' growth, but progesterone put the brakes back on.
The final, and most crucial, experiment was to see if their findings had any potential implications for treating breast cancer. Again working with mice transplanted with tumour samples and given oestrogen, the researchers used the standard treatment for hormone-responsive breast cancer – tamoxifen, which slowed down tumour growth.
But when they gave the mice tamoxifen AND progesterone, the tumours grew even more slowly.
Changing the way breast cancer is treated?
Dr Carroll's research is a big step forward in understanding the role of progesterone receptor in breast cancer. Until now, its presence was simply considered an indication of how good a woman's chances of surviving were.
But Dr Carroll's study findings reveal that the receptor itself is the direct reason why these women have a better outlook.
Understanding the progesterone receptor's role as a molecular handbrake on oestrogen-fuelled growth could also explain the observation that breast cancers frequently evolve to get rid of their progesterone receptors – this is an advantage to cancer, helping it grow quicker.
This new research offers a unique opportunity to exploit the braking action of the receptor with hormone therapy to improve breast cancer outcomes. According to Dr Carroll, this is precisely what needs to be done, and the next steps are obvious.
"The results are pretty clear and potentially have direct benefits for many women with breast cancer," he told us.
"We're already discussing a clinical trial to test whether giving women with ER/PR double-positive breast cancer progesterone, alongside oestrogen-blocking drugs, helps more women survive this disease".
If proven successful, they suggest that it could benefit up to half of women diagnosed with the disease.
It's even possible that Professor Tilley's new technique of growing tumour tissue samples in the lab could form the basis of a test to help doctors identify who might benefit from this combination of treatments.
"The pioneering technology we used in this study could be used as a simple way to see if adding progesterone to oestrogen blocking drugs further slows tumour growth," Tilley predicts.
This potential new dual therapy is still a way off – there's a lot of clinical research ahead before we know for sure that giving progesterone to women with 'double-positive' breast cancer will definitely help them.
But it's an elegant and exciting demonstration of how hard graft in laboratories around the world is continuing to make strides against a disease that – despite undoubted progress – still claims the lives of nearly 12,000 UK women each year.
– Emma
[Note: In the light of media coverage of this story this morning, we want to clear up an important point: the effects observed in this study were from using progesterone itself. Many contraceptives, and certain forms of HRT, contain derivatives of progesterone (e.g. medroxyprogesterone acetate, MPA) – these seem to act differently. So headlines claiming that a hormone 'found in The Pillslows growth of tumours' are slightly inaccurate
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Excellent article!
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I thought so too. Makes perfect sense to me to use a beneficial hormone like Bioidentical Progesterone to block uterine overgrowth. It's always struck me as weird, doctors who being willing to give women vaginal estrogen, but to not try and prevent uterine cancer. It you look at the list of possible problems with vaginal Estradiol products like Estring, Uterine cancer is a risk. No reason to take thst risk when Bioidentical Progesterone is available.
This phrase from an Estring info sheet got my attention:
In women with an intact uterus the risk of endometrial hyperplasia and carcinoma is increased when oestrogens are administered alone for prolonged periods.
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Okay, I just want to share here since you guys get this. DH and I had sex on Saturday night and the next day I asked him if it was good for him (lol) and he said, "you know last night was the most fun we've had since your very first diagnosis". I totally agreed and asked why he thought that. "I didn't even think about the cancer, that has been such a looming cloud and for some reason it wasn't there last night".
I still hurt some but it wasn't the focus for me. I will say that I really hadn't been thinking about the feelings of my DH and that fact he was scared too. Scared about losing me, scared that he was hurting me, afraid that our lives would not be the same and that we wouldn't be able to get past this and continue to grow together. We've been through a lot in the last 35 years and I am thankful for him. truly marriage is a crapshoot, you never really know what you got until the stress reveals your true character.
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Smwusaf: THat's great! I am so happy when people share good news on here. It gives everyone else some hope.
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smwusaf and anotherNYCGIRL- glad to hear you got a good one. I did too.
I guess sometimes we may not think about what our spouses are going through and their feelings and fears during our treatment. In my case, my sister also had cancer, stage 4 however (not breast cancer), and passed a week and a half after my lumpectomy. So dh was dealing with me and that as well. I swear he walked beside me, behind me and sometimes carried me. Count me in as one of the lucky ones in that regard.
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Smwusaf, what a lovely post. My heart broke a little for your husband and then I think I loved him a little because he sounds like a sweetheart and a keeper.
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Thank you Capecodgirl, - glad for you, too!
Hope all here find comfort and peace, - and understanding partners (if they want one
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macb, please tell me more about your estriol and progesterone. What does your onc say? Who prescribed it? How’s it working? I’m so sad. My sex life sucks. It hurts and I can’t orgasm. I have one sleeping ovary and take Tamoxifen.
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I am sorting through the available lubes discussed here and doing my own research, and ran across an article that asked oncologists about vaginal estrogen in ER positive women and if it could be dangerous , and one third said no , one third yes, and one third has no opinion..
1. Anyone here successfuly use a device similar to that transwomen use to keep their synthetic vaginas open? They have to dilate frequently or the hole shuts off. It seems if the hold is big enough and easily dilatable there will be less need for tons of moisture to insert A into B
2. Anyone here successfully give up on vaginal intercourse given all the problems with door lockdown and just move to fellatio as the usual way you have sex with DH? More men than women reallylike that, so now their wives' BC gives them a chance at having more of it!
3. Many women with BC and no libido could go without sex, just want love, and because they love DH, they try to please him, One option is to just let DH look at porn if he needs to be satisfied. Contrary to myth, men do not leave wives because they ejaculate while looking at a magazine or movie so it might relieve some tension for both of you if he has good mojo and you have neither libido nor an accessable vagina (or a painful one) and neither of you like fellatio.
Just some thoughts
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I can recommend highly recommend Fin. https://www.dameproducts.com/products/fin
Haven't tried Eva which you can supposedly use during intercourse. https://www.dameproducts.com/products/eva-ii
I am lucky that the arimidex hasn't caused dryness that a lubricant can't take care of. I think it is taking away my libido to a certain extent due to lack of estrogen but we all need to be held and loved. It is just difficult for me to come to orgasm so when we have finished satisfying my husband, he takes care of me with the Fin.
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I am recently diagnosed and go in for my unilateral masectomy this Friday. I’m single, and haven’t had sex in a while. Well, with the looming masectomy, a very good friend and I decided to take a romantic getaway, and explore the “benefits” of our friendship. He was wonderful and he too is having a very hard time with my diagnosis. Weboth kinda knew, how much I needed this weekend to have one last time to feel like a complete woman before feeling like an amputee. However, what I wasn’t prepared for, was how PAINFUL sex would be. I have never experienced this before. Is this a common occurrence with breast cancer?
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Suite: It's common after chemo and hormone blockers. But are you doing any of that yet?
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Lisa, you said that you hadn't had sex in awhile. The lack of activity may have caused pain once you resumed activity.
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I had atrophy long before my diagnosis due to my age and not being sexually active. You'll most likely have to work with dilators and moisturizers, but def keep your team in the loop. Don't put it off. It's important that you address this sooner rather than later - even if you're single. Sorry to say it will only get worse if you're going to be doing anti-hormonal therapy.
Good luck!
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That is true Corky. Though this degree of pain is worse than I have ever experienced. I had some bleeding too. Here it is days later and I am still sore! Totally sucks! I really wanted to enjoy myself.
Which dr on on my team do I discuss this with?
I don’t yet have an oncologist. That will come after my surgery I am told.
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Thank you. Can’t imagine it getting worse. Gosh why are we taught these things earlier. Although I have been single a while. So not sure I would have been able to do anything about it, or would have cared to prior.
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Hi Trvlr,
Not yet. Recently diagnosed in March. Have my masectomy this Friday. Its all very new.
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Suite Lisa, when I was interviewing oncologists, I made it perfectly clear during the process that they were taking care of the whole me. I had my husband with me on these "interviews" and came right out and said sex was a very important part of my life and that if he felt uncomfortable about me asking any questions, I would not be the patient for him. I think I shocked him a bit, he has been very open. Since I am taking Tamoxifen I made a trip to my GYN and told him too. At the suggestion of my GYN I use coconut oil several times a day (almost every time after I pee) on the outside of my vulva and the entrance of my vagina for moisturizing per my GYN. As long as you are not using condoms you can also use coconut oil as a lubricant. The GYN also suggested olive oil too but I decided to go with the coconut. I also use Vagisil Pro Hydrate three times a week. The GYN and oncologist were very frank with me that if I didn't use it, I would lose it. They suggested intercourse at least three times a week. I was sexually active during chemo and this is where it was the hardest, I hurt a lot but after chemo ended it got better, I did this knowing it was best to try instead of letting my vagina atrophy. Let your onco know if you are sexually active during chemo because he informed me that chemo can be found in your vaginal secretions 24-72 hours after an infusion and if your white blood cell count is low you have to be careful of infections. I am 48 hadn't gone through menopause and just started Tamoxifen in February.
If you don't have a partner, I would suggest using a vibrator, starting with a smaller size and working your way up to bigger sizes. Sorry for being so graphic but this is what works for me. Wishing you the best.
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KCMC - Thank you so much for your frank reply. I am having a tough night dealing with the masectomy coming up this week, the new found issue with how painful sex is, the new knowledge of this “atrophy” affect, that I hadn’t known about before. The “use it or lose it” rule, being single, and wondering how willing my friend is to ....eh em...accommodate me. Lol. I live with family members and currently share a room with my sister, I just turned 53 and this was the first time I have had sex is 7 years!!! I am a mess tonight. I feel like a death has occurred. A death of my future, my sex life, my breasts, ever falling in love, or being loveable again. Not knowing how to handle my feelings without burdening my friend, yet sharing this info with him so he knows what is in store ahead. Wondering if he will be here when I am recovered enough from the masectomy to have sex again, or will he have moved on. He is 14 years my junior. I just want to take a bottle of wine to bed with me tonight
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Faithsmama, I was terrified before my mastectomy and DIEP. I even asked the Plastic Surgeon what would be the chances of me dying on the table and he said I would have a better chance in getting into a serious accident heading to my surgery before I'd die on the table. I was a wreck, but as soon as I woke up from surgery it was all over. Take one day at a time, one issue at a time. 53 is very young, i doubt very much your love life is over, though you may feel that way now. Things will be different, you should grieve all you will lose. I took a picture of my breasts the morning of my surgery so I would have a remembrance. Maybe a bit silly, but I needed to say goodbye in my own way. It is an end of things the way you know it, but with me things look different a year from now. I don't waste time on silly things. I try to enjoy each moment I have been given. It is too early for you yet, but given some time from now things will look different. Don't give up, grieve and try to move on. You will and are desirable and lovable!
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