IVF and breast cancer - my experience

Hi Ladies.

This is the first time that I've posted here.

I was diagnosed in June with locally advanced breast cancer and following a mastectomy I'm now nearing the end of chemo. I have more surgery and radio to come and then 10 years of tamoxifen. The doctors are adopting what they call a 'belt and braces' approach.

However, the reason I'm posting here is not to do with the treatment, but with the cause.

I had five rounds of IVF between the ages of 41 and 44 and a year later I had a mammogram which revealed a massive tumour in my breast. It was so blatently obvious that at the time of the biopsy and before anything was even confirmed I was told that something was very abnormal and I would have to stop any further IVF treatments for a minimum of 2 years.

Why? I asked. Because going through IVF now is like putting kerosene on a fire said the radiologist.

I don't know for sure what caused the cancer, but I do know that round after round of IVF would have made any existing tumour worse (the small print on all the IVF drugs that I never read at the time, I later saw said 'Do NOT take if you have breast cancer') yet no one ever mentioned any risk.

I really want to find out more about the link between IVF and breast cancer and wondered if anyone has similar concerns, experiences or information they would like to share? It seems desperately important, yet when I ask doctors about the link I'm simply brushed off with a 'there's no conclusive evidence' line.

18 Replies

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  • Omg that is awful. Unfortunately I cant help you but I wish you well in your search for information. Also, all the best with your ongoing treatment xx

  • Hello, so sorry to read your post, just wanted to wish you well with the rest of your treatment & hope all goes well.

    Best Wishes 💐

  • Thank you.... feel like I'm in a tunnel on my own at the moment... xx

  • It must be an awful feeling for you, have you tried Breast Cancer Care?

    I know when I was diagnosed with Triple Negative Breast Cancer l was almost relieved it was TBNC (despite its reputation) as l was on HRT so was relieved that was not the cause of my cancer.

    Very Best Wishes to you, l hope you can find some answers.

    Mrs N 💅🏼

  • It is really difficult to tell. It is possible that you had a small tumor which was driven by the IVF treatment and it got larger in size. The IVF drugs sure can act as a driver, but drawing a cause - effect is difficult and therefore your doctor likely brushed it off and decided to focus more on treating the cancer.

    You may want to speak to a fertility expert in your Country. If you are in the USA, Dr. Irene Su in San Diego is an expert with Cancer and Fertility. There are surly others but we consulted Irene Su from Japan after taking a phone consultation. An expert that can work with your oncologist, may be best able to guide you on your fertility options and on possibly what may have been the cause for what has happened.

    fertilityclinicsandiego.com...

    But it is best to focus on the treatment now, and think about fertility options post treatment or after the initial chemo or radiation (or whatever your treatment guideline is). As your cancer is ER+ (or ER+ and PR+, not sure).

    With IVF and with even Pregnancy, hormones in the body increase a lot, so it may be recommended to work closely with a breast oncologist and a specialized fertility expert who is knowledgeable about ER and PR + breast cancers. You may want to hold off on any IVF treatments or pregnancy for now. But that depends on what your doctors advise.

    Here is a study, however, I am not sure to the total accuracy of what is produced here. Also this talks more about Triple Negative Breast Cancer. Note that there would likely be a more direct correlation between ER+ (or PR+) breast cancer and IVF, as they know Estrogen (and even Progesterone) can be a driver. So this study focuses more on the other side of the story where the driver is Unknown, and it talks about TNBC. But it will give you some answers that you may be looking for, and may even touch upon ER+ and PR+ breast cancer. You do know that there are several types of breast cancer - ER+, PR+, HER2+, a combination of these cancers, triple negative breast cancer and / or Inflammatory Breast Cancer. Also, the biology, and driver, and the aggressiveness of each breast cancer is different. You must have done an Oncotype DX Test to determine your likelihood of recurrence. You should take all your lab biopsy reports and talk to a Cancer Specialized Fertility Expert.

    cebp.aacrjournals.org/cgi/c...

    FYI, my wife had TNBC at age 28. Finished treatment. She is now 31. Waited for over 2 years and has tried a few IUI's unsuccessfully and we may begin IVF soon. TNBC is not due (driven by) to ER, PR or HER2, and they do not know the exact driver (so we do not have a pill like "Tamoximen" after we've tried all the chemo, radiation and surgery. We just have to hope for the best.

    With treatment, the AMH (Anti-Mullerian Hormone) levels will likely decline, depending on the type of treatments, so you may want to work with your doctor closely.

    I am a layman, so you must talk to a specialist / expert in the field. You can also discuss with your Oncologist and your fertility expert on taking an LHRH Antagonist Injection (Suprecur) every month to try to protect ovarian function. There are many ongoing studies on the LHRH Antagonist, some showing success, but how this affects your cancer is unknown, so take it up with your Doctor in your next session.

    By working with a good specialized Oncologist and a Fertility Expert you may be able to have many of your concerns and worries answered.

    Focus on getting well. All will be fine. Heal well. Stay blessed.

  • Thank you so much for your reply. I have ER +++++ breast cancer (i very highly positive) so what you say in your email is right - if the tumour was there it would have increased as a result of the oestrogen.

    Wishing you, and your wife, all the best...you sound like you're being a rock to her!

  • Very few of us read the leaflets supplied with medication prescribed by our GP,I still haven't read the leaflet in Letrozole, but after reading items posted here, I know my symptoms are normal.

    I took HRT,and again didn't read the leaflet,as I was sooooo relieved that the hot flushes and night sweats stopped,and if I had,I would have thought "that won't happen to me".

    When I read the posters on the wall at the breast care clinic, 4 out of 5 probable contributions applied to me, the only one that didn't was I've never smoked,when I spoke to the team about HRT,they said it certainly didn't help the situation.

    I've now lost some weight,cut down the wine, and if I do have a glass I dilute it with soda,STOPPED HRT, and do a bit of exercise.

    Good luck with your research and ongoing treatment.xx

  • Hi

    I didn't go through ivf but I did have clomid when I had infertility treatment , I had iui treatment, that was 20 years before I was diagnosed with ER+ Breast cancer.

    I had my two children shortly after, I do think some of the drugs for ivf do increase the hormone levels, and pregnancy does also, if you are ER + breast cancer, the levels of estrogen fuel the growth, and they are high when young and reproducing. So those levels have to be cut down as low as possible when diagnosed with ER+ which they do by giving tamoxifen or letrozole, depending if you are post menopausal or pre menopausal.

    Good luck and all the best with your treatment, we are all here for you xx

  • thanks Debs xx

    I'm pre menopausal but think the chemo is bringing on the menopause, and if it doesn't my oncologist says he'll induce it...

  • Just sending love and hugs for the rest of your treatment x

  • If your cancer was hormone receptive,any treatment which stimulates hormones will exacerbate the problem. I know I'm having discussions with my oncologist at present about being allowed take a break from tamoxifen to try get pregnant. ....she wants me to stay on it for full 5 years (I'll be 42 coming off it) & then use embryos I've had frozen. When I spoke to my gp about it she said it's to do with oestrogen level. Normal level is about 300, but this jumps to over 30,000 when pregnant. Hope this helps xx

  • that's really good to know, thanks. Though we've now put the idea of baby no. 3 to rest. am so sad but i'll just be TOO old (and i'm really talking old!) when after all this treatment and 2 years of tamoxifen!

    good luck with everything and believe me, 42 is nothing!

    xx

  • Hi, I had ICSI treatment twice resulting in my big son then my boy/girl twins.i too often wondered was it the hormone treatment that brought on my breast cancer.of course I got same reply that there was no evidence but personally I do see a link

  • it's hard not to see a link when the drugs aren't so different from HRT and that link is undisputed now.

  • I don't have any information to add but I was thinking the link with HRT is well established now so I guess IVF might have a similar effect? Good luck with your research.

  • exactly....

  • I found quite a lot of information about the link between ivf and breast cancer. I'll copy a few for you to read:

    cancerresearchuk.org/about-...

    google.co.uk/url?sa=t&sourc...

    genesisresearchtrust.com/iv...

    Your oncologist should be the person who is most up-to-date with the most recent research. In my opinion, if I knew that having a child would put my life at risk, I wouldn't go ahead because I would want my child to have a mother until he/she is grown up and not to be left without one as a child already.

    All the best,

    Vicky

  • thanks for the links vicky xx

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