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.
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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.
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.
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.
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
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
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.
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.
Hello - I just came across your question and had to respond. I'm 100% convinced that the two IVF cycles I underwent caused - or at the very least - stimulated an existing breast cancer to grow. I walked into the fertility clinic a completely healthy person. In fact, a few months before starting IVF, I had a breast exam and the ob/gyn had no concerns. Fast forward a few more months after undergoing two IVF cycles, and I felt a lump in my breast. From there, I was diagnosed with an early-stage breast cancer (Stage 1a), but very fast growing. There has been no consensus among the doctors I've spoken to re: whether IVF caused my cancer. Some say "yes," some "maybe," and one said "no." I know that hormone replacement therapy and birth control have been linked to an increased risk of breast cancer, so why not IVF? It's the same thing - a synthetic estrogen (and w/IVF, progesterone too). There is some research out there stating there's no connection and fertility doctors will definitely not admit to the connection, but based on my own experience - and that of others I've known - no one can tell me there isn't a connection. There absolutely is, and the fertility industry should be taking more precautions to prevent it by at least telling patients there's a risk. My fertility doctor never even mentioned it, or recommended I get a mammogram before undergoing IVF. I caution all of my girl friends about IVF and the increased risk of breast cancer. I just wish the fertility industry did, too.
I absolutely agree. I went from having a history of benign breast cysts before IVF, to early stage but fast growing cancer within 24 months. Had to have a double mastectomy in Feb this year. My surgeon is world-renowned and she says she would estimate that IVF increases your chances of sparking the growth of underlying cancer cells by 3 times that of women who have not had IVF. If it cannot be proven, the fertility clinics should at the very least ask you about your family history and request a pre-treatment mammogram so that there is a point of reference. Surely patient care should come before the need to blame, deny and point fingers elsewhere?
I read your post and was wondering if I had written it as our stories are similar in many aspects. In my case, it was stage 3 triple negative BC. I had a breast examination done by my OBGY a few months before and there was no sign of the lump. I then had two rounds of IUI and one round of IVF and two weeks after the cycle failed, I discovered a large lump on my breast while bathing. It was too large to operate on, therefore I had neoadjuvant therapy. The doctors insisted that it wasn't caused by the IVF but I am not convinced. 7 years out and I'm grateful to God.
Hello hello... so good to hear your thoughts on this, and about your experience. I'm with you. How can it not have an impact? I think it will be very difficult to demonstrate that IVF causes bc, but increasing or accelerating existing bc is a different mater. The info leaflets in the IVF drugs themselves specifically state do not take if you have breast cancer. Yet doctors let you have round after round of IVF with absolutely no mammograms/check ups/warnings of bc.... But I'm a bit at a loss as to how to take this further...
First, I would like just to start out by giving you lots of well wishes for a very speedy recovery. I am extremely passionate about this topic. My best friend who was quite healthy before her fertility treatments at the age of 30 went for several rounds of IVF treatment and was shortly diagnosed with Triple Negative BC soon thereafter. In fact, when she got the diagnosis, she said she did not regret having her sons but was convinced it was due to the treatment. I am especially sensitive to this because I am considered a "DES" daughter. Many years ago, when women were having miscarriages, doctors were prescribing a drug that is no longer on the market called Diethylstilbestrol aka DES. Several years later, it was discovered that this fertility drug began to cause a very rare cervical cancer in young girls who were born to this drug, and, sterility in boys. It took many many years to get this fertility drug off of the market. I strongly believe that due to the fertility world of big business, this will always be covered up. However, you should know that there are more published studies being done on this ("TWIN Study"). Despite all of the denials from the so-called fertility experts, science has now proven that there is a strong correlation between breast cancer and fertility treatments. I myself have visited fertility specialists throughout the years to get several tests done. However, I was and continue to be petrified by taking anything. One of the fertility doctors that I met with several years ago convinced me that she was fine from having an egg donor. She also received a diagnosis of ovarian cancer one year later. I do know several people who have had to sign disclosures stating if they do get cancer from the drugs, they are not able to sue the clinic. I think the public needs to be much more educated on this subject ! Unfortunately, many women continued to take DES and went on to have children who have had a lifetime of health issues. I wish you the best in your recovery. I encourage you to keep on doing your research and making the public more aware! Maybe start a Fertility Treatment Cancer Blog. Best Wishes, XO
Jodist - thanks for your your wishes and telling me about DES and how it was taken off the market, that's really interesting... we need so much more information and awareness in this area. However, I'm very much torn between the importance of gathering stories and data on IVF and BC and the burning desire to put this whole experience behind me and move on with my studies xx
I hope you’re doing well. It’s been some time since your last post, so I don’t know where you’re with your life, but I sure do wish you a better prognosis.
About 2 weeks I’ve been diagnosed with early stage IDC. After 3 rounds of IUI and 1 IVF used with follistim, birth control, estrogen, and progesterone the last 1.5 years, I’m now a cancer patient but still childless. I did IVF just about 2 month ago, without a lump anywhere and now I have 2cm tumor on my right side. I’m 100% ER and PR+, and my onco suggests I should not get pregnant for 5 years during tamoxifen. I’ll be almost 43 when the treatment is complete. During consultation, oncologist said there isn’t a correlation between fertility treatment and breast cancer, but my breast surgeon differs and said “maybe some”, and I agree with the surgeon because I’m the living proof among others. Sure, it’s probable I had the cancer prior to the fertility treatment, but as someone said above, it’s like kerosine over fire.
My fertility doc never ordered me a mammogram and didn’t even do a breast exam. I am sure mammogram would have detected my now 2cm tumor 2 months ago, then I wouldn’t have wasted two of my healthy embryos. I try to think positive, at least I found it, and perhaps thanks to all those drugs, I found it sooner than later. But I absolutely believe fertility specialists should require mammogram before the procedure and educate them about the side effect.
I so agree with you, and thank you for sharing your experience. And I really feel for you with all you've been through and losing 2 embryos.
I think because the scientific evidence at the moment doesn't support the fact that fertility drugs cause BC , the debate stops there. The real issue, I think is that if there is a pre-existing tumour the impact of fertility drugs can be catastrophic. Consequently fertility doctors should make mammograms mandatory before/after fertility treatment and warn of potential impact on existing BC tumours and advise vigilant self-monitoring.
I think the economic imperative to keep costs down - whether NHS or private - is why mammograms are not required. And women undergoing treatment - like you and I - are paying a high price for this neglect.
Hello. Are you still interested in this topic? I was diagnosed with stage 4 breast cancer 2 years after IVF + DHEA ( taken on the advice of the fertility consultants). I'm convinced that the drugs fuelled an early asymptomatic tumour and led to my cancer becoming 'extensive'. A breast cancer surgeon, a radiologist and my oncologist told me that this is entirely likely, given that my cancer is hormone receptor positive. Have you seen this? ccrmivf.com/news-events/giu...
A mammogram given PRIOR to her IVF probably saved her life. Her fertility doctor does this for all patients. He states that the IVF drugs can 'accelerate a pre- existing breast cancer'. I feel that IVF clinics should be mandated to do this. It may have saved my life had this been part of my care. Please do get in touch if you would like to help me to raise awareness of this issue.
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