Coming off tamoxifen early to have a baby
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Slg76,
I'm so sorry to hear about ur miscarriage.... Just continue to be positive, and I am certain things will work out for ur best interest....
And thank u guys for the warm welcome!0 -
Hi, I am new here and technically at 41 have aged out of this group (although my cancer was found when I was 36). but I found this forum and wanted to share my story since my cancer was found at the same time that I had decided to start to try to get pregnant. It took a while with multiple surgeries to discover the extent of the cancer, but eventually it was determined to be stage 2, grade 1 invasive ER+ PR+ ductal carcinoma and one lymph node involved.
Before starting chemo, now at the age of 37, we managed to freeze 2 embryos and one of my ovaries. At the time, I had 18 follicles, 16 immature that they planned to try to mature in vitro and two that matured on their own in the ovaries. Unfortunately all the immature follicles were sticky and they weren't able to remove the eggs from them. I also went on Lupron to try to preserve the intact ovary. Between the Lupron and the chemo my periods stopped. I completed radiation treatments the day after my 38th birthday and I went on tamoxifen.
Given my age and my desire to start a family, my oncologist allowed me to go off tamoxifen after 1 year (then age 39) to try to have a baby. Within 3 months of stopping tamoxifen, my periods came back (about 1 year and 8 months after they had stopped). Our first step at that point was to try to implant the frozen embryos, one did not survive the thawing the other didn't stick. My intact ovary was just barely functioning, producing 1-2 follicles a month, so we decided to try a "natural" un-hormone induced IVF cycle. One follicle developed, but it did not fertilize.
So next step, was to graft my frozen ovarian tissue back in. This was done in October 2012 (age 40) with two separate surgeries and the ovarian tissue grafted into three different locations. It takes about 6 months for the graft tissue to start functioning (if it is going to). They saw only minimal functioning (follicle production) from just one of the graft locations, but the grafts did seem to improve the function of my intact ovary. I now was having cycles every few months where I had 5-6 follicles. So we went ahead with modified IVF (some but not all the hormones). First post-graft IVF cycle was this June, started out with 6 follicles got three embryos, but no luck. Then I had another good cycle and went for another round of IVF in September. Although starting out with 5 follicles, we wound up with only one embryo. But it was considered a high quality and it implanted and I am now 8 weeks pregnant!
I'd also like to say to any young woman who is just getting started with cancer treatments, do what you can to advocate for yourself, or get someone to advocate for you if you still want to have a family. My first oncologist was completely unsupportive of any fertility preservation measures. I managed to fight him enough to get the fertility work done, which delayed my chemo by only three weeks, but I knew I couldn't keep him as my doctor for the rest of my cancer treatment. He just made me too angry. Luckily the hospital had assigned me a nurse advocate for my treatment and I was able to contact her to switch doctors. The second oncologist was like night and day. He said he couldn't understand why the first was against the fertility preservation. My cancer was low grade, slow to spread and the chemo was an adjuvant therapy. He said if I had seen him to begin with, he would have allowed me two months to take care of the fertility issues.
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thelorax - huge congratulations to you!!!!!!!!!
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Thrilled you found us. Thank you so so much for sharing your wonderful story. It is such an inspiring story to us all and I have to say on a personal note it really struck a cord with me as I have just turned 39 and have this week begun my first IVF. I haven't any eggs frozen so hoping to get a batch of really good eggs late next week that will do for a few cycles (if needed). The specialist seems very confident as my results all look good so I'm planning (not hoping!!)to hold my baby in my arms this time next year.......not too long after you If you have any tips for me on the whole IVF process I would be delighted to hear them. Feeling a bit isolated as I've only 2 friends that I have confided in about where we are at. Every best wish with your pregnancy - you must be on cloud nine!! xxx
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Hello thelorax!! So good to hear your story. Thank you for sharing. You must be beyond happy to have that little heart beating away inside you. Congratulations!!! I love hearing that you stuck up for yourself and your desire for a family. I think that the person that cares most about your future/fertility is you and your family so you have to learn your options and make smart choices. It certainly sounds like you did just that. You had a long road to your pregnancy and I'm so pleased for you that the outcome was good. Please keep us posted on your progress.0 -
thelorax - thanks for sharing your story and congratulations! I really hope it works out for you.0 -
Thanks Tesmerelda, slg76 and Marlene,
I am indeed over the moon, but at the same time very wary - 8 weeks is still early. Hoping I'll make it to 12 weeks and be able to relax a little. Although I am sure I will worry the whole time. But now two months in it starting to feel real.
Tesmerelda, I do know how hard it can be to go through the fertility treatments mostly alone. I also kept it almost entirely to myself. Although my immediate family was aware when I had the surgeries to graft the ovarian tissue back in, I did not share the details of everything else. Other than my husband, the only person who really knew all the details was my sister. My fertility doctor had estimated my chance of getting pregnant at about 5% and I just couldn't deal with talking about it with too many people with that little chance of success.
As for the IVF, now that my parents know about the pregnancy, I did go into detail with my Mom about the treatments. She asked me if it the treatments were hard on me and I said, "Oh they weren't that bad". She pointed out that I might have a bit of a skewed perspective based on everything else I've been through with the cancer treatment and that a normal woman would probably be moaning about how difficult they were. And I think she is probably somewhat right on this. The hormones did make me tired, sometimes whoozy, and more headache-y than usual. The egg retrieval is a bit uncomfortable, but they usual do it under local anesthesia - the injection hurt, but then it is numb after. You do feel the pressure when they push into the follicles to retrieve the eggs. I was always a bit crampy after the procedure. Physically the most challenging part for me was when they transferred the embryos back in. It is not painful, but you have to do it with a very full bladder. I always wound up drinking too much water and they never quite managed to transfer at the scheduled time. It was always torture. The fun part is that both the egg retrieval and the embryo transfer are done under ultrasound and you should be able to watch it all on screen if you want to.
The physical stuff aside, it was the waiting and the emotional parts that were the hardest. Waiting for things to develop at each step and worrying whether any of it would work out and the devastating feeling when it didn't. But I think all of that is typical for anybody undergoing these kinds of treatments.
I do hope everything goes well with the IVF for you. Do you know yet how many follicles you are starting out with?
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slg76, I am glad I stuck up for myself as well, although I really wish it hadn't been necessary. Just going through all the cancer stuff is hard enough, it is a shame that I had to fight so hard for what I had done. It still makes me feel so angry especially when I think about other young women who will wind up with the same doctor and who might not be able to speak up for themselves.
That first oncologist was such a b@$#@*%. He did ask me what my family/fertility plans were and when I said we still wanted to have a baby, he told me that it was highly unlikely that I would be fertile after the chemo and that nothing could be done about it after the age of 35. I am American, but live in France with a Belgian husband and he told me that they wouldn't do fertility preservation on women over the age of 35 in France. I said, in that case, I'd go to the US or Belgium to get it done. As it turns out, his statement about the cutoff at 35 in France was entirely untrue and I did have everything done here and entirely paid for through the national health insurance (Thank you France!). Timing wise, I was somewhat lucky since I was right at the start of my cycle and could undergo the pre-chemo IVF immediately and the oncologist finally conceded to giving me 2 weeks to have the egg retrieval done. In the end the retrieval wound up taking 2 and a half weeks plus it was another 2 days for the ovary preservation after the egg retrieval went badly and the oncologist berated me for taking longer than his designated 2 weeks. It was at that point that I called my nurse advocate and asked for a different doc.
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Thelorax Wow you are very lucky indeed, I was told the same here in Canada that due to me been 38 at the time of DX i should kiss good bye my dreams regarding kids. I then was given the Chemo the following week, so by the time i thought about what this meant to my fertility i was already out of luck. Now I decided to just hope my body fights and get back to normal one day
In Canada fertility is not cover so i cant really afford it so i guess i may never be a mom. Anyway i am glad for all of you new moms wish you all the luck. I may go to Marseille for 3 months next March, i have relatives there, i miss France, i will make sure i tell them how lucky they are to have a program for fertility lol0 -
Thelorax - thanks so much for the advise. No idea about the follicles. Going for first scan on Tuesday. Taking FSH injections at the mo. Fingers crossed!!! When is your first scan? you must be so excited))
Enerva - have you had AMH test done? I would give you an indication of where your fertility is at. Are you on Tamox now? It is annoying that IVF is so expensive. I'm living in Ireland and we have a drug payment scheme so must of the meds are paid for and I will get about 25% of the price of IVF back but it will still set us back quite a bit. Were you given any injections to surpress your ovaries while on chemo?0 -
Hi, I haven't had the test yet, my onco said she will give me the referral for the Fertility clinic next year cuz she feels its too early since it hasn't been a year yet. I am not on Tamox i refused it. I have to have my exchange surgery in Dec then i will try to get the Amh test. I wasn't given any injections to suppress my ovaries i was not even told i had that option. My problem is that i was all scared when i met the onco and she got me to agree on starting chemo the next week so it all happen fast then when i read what could it all do to my fertility it was too late. I am now praying my p comes back, it went away with the taxo in Dec 2012. still not back.
Thanks for all the info i wont lose faith
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Enerva, I also could not do anything for my fertility during treatment because I was pregnant at the time. My periods had stopped due to the pregnancy and didn't come back until 7 months after I stopped tamoxifen (I took it for 18 months). My AHM test came back below the limit of detection. And, we found out I wasn't ovulating every month on my own. Not good. My fertility doctor is optimistic and said, "well I've seen worse. Let's make this work". I actually was able to get pregnant in Aug!!! Sadly I miscarried but it had nothing to do with my cancer or poor fertility. I'm confident that I will be pregnant again soon. Even when the odds get stacked against us, we can do this!!0 -
Thanks Slg76 you give me hope
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Hi Enerva, I am sorry you weren't given any options to try to preserve your fertility. I do indeed feel very fortunate to have had this all paid for in France. We certainly would have made some different decisions if we had to pay all the expenses. I still would have tried to freeze embryos before the chemo, but I don't see how we would have been able to pay for all the surgeries for freezing and reimplanting the ovary. Also after the frozen embryos failed, I don't think I would have gone for IVF on myself since my chances of success would have been so low. Instead we would have probably gone for an egg donor, which is still what we would have planned to do if we had no success with the IVF.
I wasn't told about the injections to halt ovary function either, but found out about them myself reading online. The doctors told me there wasn't any definitive evidence that they would work, but they said if I wanted them I could have them. Try to hold tight with the periods. As I said earlier, it took 1 year and 8 months for mine to return.
If you want to have the AMH (Anti-Müllerian hormone) test done, IMO, I don't think there is any need to wait. It is just a simple blood test. It is a hormone that is secreted by follicles in your ovaries, so the levels in your blood can give you a rough idea of whether you still have a good stock of follicles left or not. Mine was low, but detectable.
And just to add, for the French health system, they also take care of patients with regular non-cancer related fertility problems. They allow for up to 3 rounds of IVF through the age of 42.
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Good luck on Tuesday's scan Tessmerelda! I hope you see lots of follicles. Let us know how it goes. Just so you aren't surprised, they will look for them using a trans-vaginal ultrasound. The *ahem* apparatus they use/insert can be a bit of a shock if it is the first time you're having one.
I already had the first ultrasound at 6 weeks and 6 days. They needed to confirm that there really was a little embryo growing in there and not just an empty sac. And there was, he/she measured 5 mm at that point and the heartbeat could be seen flashing. I was told everything was exactly on target. The next ultrasound is scheduled for early December, I'll be nearly 13 weeks at that point, so just starting second trimester.
And yes, I did take Lupron injections during chemo to suppress ovarian function.
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Hooray for healthy little bean with a strong heartbeat. Great news!!0 -
ah that's super news TheLorax!! Must have been so exciting having the scan!!
yes I'm fairly familiar with the ultrasound from when I had CLomid - bit of a shocker the first time I have to say!! fingers firmly crossed
Enerva - that is annoying that they didn't suggest the ovary suppressant. Every onc seems to differ so much in their approach. I wouldn't have had a clue but my onc suggested it. I was grade 3 so there was no time for freezing embryos. I've no idea really if it helped or not taking the suppressants (Zolodex) but thankfully all seems to be ok and as for the IVF.....well maybe I would have had to take this road cancer or not....who knows. My sis also had IVF on both kids. Either way there is nothing at all to suggest thus far that you won't be able to get pregnant naturally so fingers crossed for you hun x0 -
Yes it was incredible to see the u/s and know that all was going well. Although I was super nervous going into it. Plus my husband was away on business he couldn't get out of, so I was all on my own to deal with it if there had been any bad news. Slg76, I've seen your posts about your loss from August and I am very sorry to read about it. I hope everything works out for you soon!
Since there is a lot of talk about getting/not getting the ovary suppressing shots during chemo, I just wanted to add my 2 cents. My background is in biochemistry and I worked for 10 years in a basic research lab where about half the work was focused on cell growth regulating proteins (the ones that often go wrong in cancer and allow cells to grow and divide unchecked). So when I can, I go to the primary research articles and read those. I did read the articles I could find on the ovary suppression shots that were available at that time I was going to get chemo (early 2010). I don't know if better research has come out since then, but I was pretty skeptical of the studies from that time. I didn't think they were very well carried out. The number of participants was very limited, there were no control groups and I thought the claims they were making for success sounded too good to be true.
There are also the very valid concerns for those of us with hormone driven cancers. Standard chemo drugs target cells that are rapidly growing and dividing. Taking the ovarian suppressing shots drastically decreases estrogen production, which may decrease the growth rate of estrogen driven cancer cells thereby potentially making the chemo less effective at killing those cells. I think that would and should give any oncologist pause about prescribing the shots to someone with an ER+ breast cancer.
For me personally, I chose to take the shots regardless, as I was desperate to do everything possible to still have a family after it was all over. However, even with the shots, my fertility took a huge hit. I went from having 9 follicles per ovary in the month before chemo to having usually just one follicle/month when my cycles came back. Granted it took almost 2 years before my cycles came back and I was in my late thirties so fertility would have been dropping naturally as well due to age, although I doubt it would have dropped that much. However it is impossible to sort out whether the shots made any difference or not. Would I have had no cycles at all/0 follicles if I had not taken the shots? Maybe, maybe not. If I had it to do all over again, I think I would make the same decision again about taking the shots, but IMHO, I do not think these are a clear cut answer to fertility preservation.
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Hi, I had my AMH test today, so in a week i will have the results. At least it ll give me an idea as per how bad my chances are. Thank you all for all the info.
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Hi Lorax, I haven't read the studies in detail but do know that the ovarian function preservation studies have mixed reviews and no clear outcome. Thanks for the added info; it was interesting to read. I'm glad to hear that you were pleased with your decision in the end. It's so hard to make treatment decisions when we always seem to fall into a grey zone.
I am a research scientist as well! I haven't worked in several years now but my background is in molecular biology and my research was on bacterial signaling peptides.
So happy that all is looking good with your pregnancy!
Thanks for your sympathies. My husband and I are dealing with the loss okay and thankfully are good about supporting each other. My body is getting back on track and soon we will be ready to try again. My fertility doctor is fine with me being back on medications as soon as I get a cycle.0 -
ah that's great news Enerva - fingers crossed now for good results!! Mine were on the high side of low which is apparently good for my age (39).
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Hope everyone is doing well. I'm through the egg collection process. 20 eggs collected, 18 matured and 15 fertilised!! Delighted Waiting to hear when we will be ready to transfer a few 0
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Congratulations Tess! So very happy for you!0 -
Well my results show <0.16 i am waiting to discuss the results with a Doctor but i think this is bad news? i have no idea what that # means
i will let you know as soon as i am out of here but if you guys know, tell me, i can take it, even if ut mean bad news 0 -
Well i just google it, its bad humm at least i know better now. I ll just wait to see what this doct says
i am ok though i knew chemo had done a lot of damage to me every where. All good. i am ok i am glad i did this test.0 -
That doctor was so rude, she basically said i should just be happy to be alive. I guess i should have just take the results and go home instead i waited to be insulted. She said not every woman is meant to be a mother. Anyway i am ok, not big deal it made me sad deep onside but i am ok Not much to do about it but to forget about it. I wish you all luck and i thank you for the information you share here.
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that was really rude of her - who is she to say if you are meant to be a mother or not. I would consider a 2nd opinion. And also on the result mine was on the high side of low but I don't recall the figure (maybe 2.7???) but anyways I have heard of loads of people with low AMH who concieved so I would not agree that it is the ultimate indicator. You hear of people also that they can't even detect a reading from who get pregnant - one such person on this thread will tell you that. So don't ever give up hope if it's what you want hun xxx
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WOW! Tessmerelda, that is super news!
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Enerva, I am sorry you didn't get better news and that the doctor lacked any compassion. I am sure everyone here is grateful for every day we are alive, but that doesn't mean that we can't have hopes and dreams for what that life will involve. Desiring to become a parent is still an important part of that for many of us. I know feeling that I was probably being robbed of being a mother added tremendously to all the other psychological scars from the cancer.
And for some context, my AMH number was <0.3. A bit higher than yours perhaps, but not by much and also well below normal. According to my lab report normal range is 1.2-9.6. I wouldn't give up yet. If I remember, you are still waiting to see if your cycles come back. If they do, you can always have an ultrasound to see if you are producing follicles. Ultimately that will be more important than the AMH number.
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Thanks all of you for your words, i was thinking about it and i agree with you maybe there is hope i will wait to see if my cycle comes back. I need to focus now on my exchange surgery and getting well after it. Thanks again
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I find you have to take it one step at a time. We go through so much on this journey. Good luck with everything.
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