Connection Between IVF and Cancer? I now need a Hysterectomy

I am new to this forum and I am looking for anyone that had IVF and now diagnosed with precancer/cancer. I am in tears. Was newly married and jumped into IVF due to age as it was recommeded. Uterus was perfect. Tissue samples prefect. After 3 rounds of IVF, I have been diagnosed with Endometrial Atypical Complex Hyperplasia. Put on 3 months high dose progesterone-went into remission and now it's back 1 yr. later. Told I need a complete hysterectomy because they find that 1/3 of women are found to have cancer upon uterine removal not detected with D&C. How can you go into IVF with a perfect uterus and come out with this diagnosis in such a short period of time? I believe IVF made me very sick because I had extreme headaches for over 8 months after IVF. My hormones must have been way off whack. I was so sick. You will not find one research paper on this except to say"no evidence". So not only do I come out of this childless, I now will need to remove everything! I am scared, sad, angry, etc. I only have 2 choices - progesterone treatments or hysterectomy. Is it worth another regimen of progesterone treatments with the possibility of turning to cancer or just remove everything-instant menopause? I have been crying and can't seem to stop. Thank you for listening. I have family support but feeling alone.

Hi Annie,
I am so sorry that you find yourself dealing with a precancer type situation when you were undergoing fertility treatment. I can't even begin to imagine how difficult this is for you.

I am not sure which specialists are part of your medical team at this time. I would, however, recommend you seek a consult with a gyn/onc. They are the specialists in the field and maybe one can give you an idea of where you can go from here. One may also have a better idea of what connection there may be between IVF and cancer.

Write down all your questions for the doctors.
s
Jane

Thanks JMBERG for your response. I have been to see two gyn/onc at two of the better cancer institutions. They want to take out everything! However I have a consult with Johns Hopkins within two weeks. This article explains why I want to see them. http://www.hopkinsmedicine.org/hmn/F98/mu_7.html They still may say the same thing..take everything out!. I feel like this is a nightmare! I was so healthy before. Because my family is in research, I have access to most scientific studies. I have spent countless days and nights researching to see if there is a connection with IVF and cancer and the research papers say the same. "more research is needed". The problem with that is you are not going to find a university or pharma company to sponsor a study for post IVF follow-up for cancer (uterine testing). Think of the financial loss to the institution. I fear alot more women are walking around with this slow growing cancer and don't even know it. It is unoposed estrogen that they believe causes this atpical complex hyperplasia and that's exactly what they do when you are doing IVF. You are pumped with unoposed estogen. So in my grief, I wanted to see if anyone else did IVF and now have issues since thier doesn't seem to be anyone is science doing this or at least I could not find a research paper to confirm this. When I speak to the gyn/onc, they say well.. we don't know enough about it - meaning IVF and cancer. So I will go to my next Dr.'s visit - yet another opinion end of next week and then if I need the surgery, I now need to find the best surgeon. I learned you can like someone but they may not be tops in the field. I look at all the women on these forums and it scares me to death to think what can go wrong with a hysterectomey especially without the right surgeon. I am scared that once my ovaries are removed I will no longer be myself. I am told that I am not a candidate for hormonal treatments because this was caused by hormones. This really stinks! I just cry all day and all night. Thanks for listening! Annie

You are so right, it stinks!!! I don't blame you for wanting to see what Hopkins will say. I understand that no one wants to do any research on the topic and the why. Many gyn cancers are estrogen driven. I do know that some women do use the estrogen creams as an alternative to the oral. That is something you can look into if and when you need to.

Have you done a search here for IVF? I am not sure how much you will find though. I do not know if there are any IVF forums where you can ask the question too.

You are doing what many of us here do, research, research, research. I am not sure how old you are either. Also, keep in mind, that this site serves many women. Many women who do well move on following surgery, some do stay. My experience has been good with few problems and some of those can be attributed to the "normal aging" process.

By doing the research and seeking out the best care you can find for yourself, you will know that you made your decision on the best information you could get at the time. Your health is important. I am sure your husband would like to have you around for a very long time too. I undestand that what makes this hard will be the loss of natural motherhood. That is something you will have to mourn and work through should you go forth with the hysterectomy.

s and ers
Jane

Thanks for your input. I appreciate it. I did do a search on IVF and found nothing. I picked up all my medical records and pathology reports yesterday and it made me sick. On 2/05 had perfect uterine tissue samples and did my last round of IVF 5/05 even though I was still suffereing from severe headaches from the prior IVF treatment. On 10/5 changed Dr.s and had another biopsy. That's where it showed Atypical Complex Hyperplasia. I still think how can you go from a perfect uterus to the worst cell possible in such a short time - months! Was it the medicine feom IVF? I want to shout to the world for all women who did IVF without an outcome of a child to get a uterus check. There is no protocol for post follow-up for IVF. Imagine that! I do not want anyone to have to go through this. If I didn't change Dr.s to get another opinion about my fertility and jump right into adoption, I would be a walking time bomb for cancer and not even know it. Do you or anyone else have any suggestions on how I can go about telling women to have a simple uterine biopsy post IVF? If I can do good for others, than maybe getting this will make it OK. Most likely my visits to other Dr.s next week for my other opinions will confrim I need a complete hysterectomy. I just can't seem to handle it. I so get angry that I played with "mother nature". All I wanted was child of my own.

Dear Annie. I saw your post, and I just had to respond.

I went through one cycle of an IVF program with a Hopkins physician. A year later, I ended up with an HSIL diagnosis, and complex hyperplasia in my uterus. Surely you signed papers for your IVF saying that you understood the link some researchers have established between IVF and ovarian cancer. (The ovaries are overstimulated, which can lead to openings for lesions, etc.) The studies are under dispute, but some say that 4-5 % of women in IVF programs end up with ovarian cancer.

My IVF work was in 04. My first cervical cone biopsy was in 05. In 06, with HSIL showed up again, they recommended a hyst plus BSO, taking the ovaries because they were concerned about the effects of lesions that seemed to be showing up in my uterine lining, which the pathologist suspected might be in or coming down the fallopian tubes.

So the recommendations you are getting are right on target. All of my surgeries were by Hopkins physicians, and I do believe they will tell you what you have already suspected.

Yes, it is difficult to go through the IVF cycle, suffer the loss of your babies (I lost four that just didn't make it the first three weeks of gestation), and then face the loss of your whole system. If I had really known this would happen, I probably would not have gone through the program to try to have a baby with my then-new husband. Yet because I faced cervical problems (they suspect I got the HPV from my husband, who had been a bachelor for 30 years, whereas I'd been married or in a monogamous relationship all that time), I might have ended up with a hyst anyway, or at least with losing my cervix and uterus. They said my bad cells were on the uterine side of the cervix (the endocervical side).

I hear you, dear. I know your hurt, anger, frustration. I was healthy, and now I am not. In fact, today I am back from yesterday's vaginal laser surgery, because they came up with a VAIN 1 and VAIN 2 reading in my vagina.

But life does go on -- your life will go on -- and while the hurt never goes away, if you can learn to meditate about your life a bit, you'll find the hurt and anger diminish over time, and just watching the sun rise and set becomes a worthwhile event.

I read some books on grieving, and these helped me a lot. Perhaps if you are a reader, you might look upon reading about loss as a means for coping, as I did.

We planted four little alberta spruces to honor the four little ones we lost. We bought me some tea sets to honor the days of my hysterectomy and survival, and now we have a little old doggie -- a geriatric case from an animal rescue organization -- that charms my days.

Please ask your doctors all the questions you might have. And please know that there are others of us who have walked or are walking your road. You started out with such high hopes, as I did. But life does take its twists and turns.

I will keep you in my thoughts, believe me. Warm good wishes to you today. If you feel like you'd like to talk by private message, feel free to email me a private message and we can talk here.

Thanks you for sharing your experience. I did sign papers for IVF and the controversy with cancer. However, none of my paperwork said uterine cancer. Only ovarian. I do wonder how many women are walking around with this post IVF. At this point I'm sure it doesn't make a bit of difference. I am leaving tomorrow to head to Johns Hopkins for my Tuesday appointment. I picked up all my recoards and pathology slides for review. My husband and I will spend a few days in DC first to try to get my mind off of things. I do want the best care and I am hoping Hopkins can provide that for me. I am slowly accepting a full hysterectomy and also quite scared at the same time if they do find cancer. Thansk you so much for making me feel a bit better today.

My husband feels certain that my having the IVF program essentially kicked the HPV problem he brought me into high gear. My sense is that having dead embryos in one (as I did) without getting a D & C (which they didn't recommend, after the failures) had to have done me some damage. The thing is, with the IVF, you are indeed supercharged with estrogen, but then you have that progesterone oil shot that is the final stimulator, so the estrogen is to some extent outweighed by the progesterone.

Like you, I had been in great health prior to this, and the doctors always remarked that I was in splendidly good tissue mass, etc., prior to the IVF.

It is hard, all this, but the deep pain subsides. I remember crying for no reason, much of the time, prior to my hysterectomy. Then, one night, I woke up out of sleep (as I had been doing for the previous months, in agony), and something just came peacefully to me that I needed to stop struggling, that this was the way it was, and I should embrace the situation and grow from it and become a different person than I had planned on being. I felt an immense relief and great peace from the moment. Though once in awhile, I still have tears of sorrow, I'm now to the point where I no longer ask the wind, Why me?, and instead just accept it, with Why not me? given how many others before me have struggled with much more.

I hope you have a good time in DC. Baltimore has wonderful places to visit, and nice little galleries. The inner harbor and Fells Point are beautiful places. You can dine on the water in the inner harbor and look out at all the activities there in the harbor. I have come to love the city, actually, and am considering retiring there!

I am so sorry that you are dealing with all of this. I had stage 1a ovca removed BEFORE we did IVF. Despite the risks, IVF was our only option. We went thru one round of IVF, which resulted in a checmical pregnancy and one FET which didn't work at all. We have 5 frozen embryos left, and are now discussing a hysterectomy. It is an awful situation to be in.

I know that the jury is still out on the link between IVF and cancer. I kind of look at it this way- maybe women (including myself) who need the aid of fertility treatments are more prone to cancer. Maybe the underlying cause of the cancer creates the need for fertility treatment in some women, and maybe the fertility treatments "jump starts" the cancer in others. I'm sure this may sound controversial, but it's how I have decided to look at it for now.

I hope that you get some answers at Johns Hopkins. If nothing else you will know that you have explored all of your options. It's hard enough having to go thru IVF, and the fact that it now may be the cause of your problems is even more heartbreaking. I wish you the best.

Hello Annie
I am very sorry about your situation and can understand that you must be devastated! You might be interested to know that I had 5 years infertifility treatment and two courses of IVF in the early 1990s the 2nd of which was successful. I have now been told I have complex hyperplasia but luckily mine currently has no atypia. However, I have decided not to go down the Progesterone route because I have very serious concerns about the long term effects of being pumped full of progesterone and worries about the accuracy of doing biopsies on only "areas" of the uterine lining. I have decided to have a TAH which will include removing my cervix and my fallopian tubes but not my ovaries unless they look suspect when they open me up. Interestingly my consultant said it was best to remove the fallopian tubes because the hyperplasia can grown in them - how exactly they were going to do biopsies on that area whilst I took progesterone i don't know. I do worry about the amount of hormones I took in the past and what effect it might have - in the 1990s ovarian cancer was NEVER mentioned during IVF. I suspect it may be years before anyone knows the real long term effects.