Fertility and Chemotherapy - Advise please!

Public Archive
1

I am 30 years old and have just been diagnosed with breast cancer. I have had a lumpectomy and lymph node removal (in different surgeries) and await the results of the latter, but a CT scan showed no obvious signs of spread. My cancer is 2.5 cm, grade 3, oestrogen negative and herceptin negative.

I have also just had a baby – Mabel – she is three months old now and is an angel. I am due to start chemotherapy in a couple of weeks and am in a bit of a muddle over what to do about how best to preserve my fertility. I dearly want Mabel to have brothers and sisters and have always thought we would have a merry brood. I know we are very lucky to have Mabel and I must not do anything that may jeopardise my being around to see her grow up but as I say I am also certain our family should be bigger than three. I hope this doesn’t make me sound selfish.

We have been unable to get an appointment with a gynaecologist to discuss options within a timeframe that fits with the need to start chemo and though our oncologist has tried to offer advise she is obviously a cancer specialist not a fertility specialist, so if anyone has any thoughts/answers to the following questions/issues I’d be grateful for all.

It seems at heart that I have three choices:

  1. Do nothing, have chemo, cross fingers that fertility returns; or
  2. Have zoladex injections to ‘shut down’ my ovaries during chemo and then cross fingers that fertility returns; and/or
  3. Undergo embryo storage in case fertility does not return.

But in order to decide I need to know the following:

  1. How likely is it that I would lose my fertility from the chemo anyway? (Unfortunately we don’t yet know which chemo regime I’ll have because we are waiting for node results but it has been implied that because I don’t have tamoxifen/herceptin options the chemo will be strong – if that’s the right word – since it’s the only treatment I really have, apart from radiotherapy at the end).
  2. If I have zoladex injections is there a risk that this makes me permanently infertile rather than just temporarily so (i.e. further jeopardises rather than saves my fertility). If so, how does this risk compare to the risk that chemo itself presents to fertility?
  3. Does zoladex even really work? I know it is not yet licensed for use in this way as a protection from chemo, but I understand it is widely used for this purpose? But does this mean that it definitely works for this but just that trials take ages to get the drug approved or rather than it is still very experimental and no-one really knows if it will be effective as a protection from chemo?
  4. With embryo storage do I have to wait for my periods to restart before this becomes an option (I haven’t yet had a post-pregnancy period and am only just stopping breast-feeding completely now)? Or can they just give me lots of hormones to encourage ovulation and then harvest those eggs? And how long will this likely take?
  5. If going for embryo storage might delay the start of chemo for a few weeks or months does this matter? Particularly given that I have limited other treatment options?
  6. Is there anything else I should consider?

I hope this all makes sense and thank you for any thoughts/advise!

2

Hi and welcome to the Breast Cancer Care discussion forums, I’m sure you’ll get lots of support from the many informed users of this site but while you are waiting for their replies I have put for you below links to two of BCC’s publications which may be useful to you. Also, I think it might be worthwhile you giving the helpline here a ring and having a chat with one of the breast care nurses who will be able to discuss with you your questions regarding fertility. Calls to the helpline are free, open Mon-Fri 9am - 5pm and Sat 9am - 2pm.

Fertility issues and BC :
breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/84

Ovarian ablation:
breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/85

Hope this helps. Kind regards,
Jo, Facilitator

3

Hi Jessgp,
Sorry you’re going through this. I’m not sure I can help that much, but wanted to let you know my situation as there are some similarities.
I was dx Jan 08 with a 5cm triple neg lump and had chemo, surgery inc node removal then rads, finished Sept 08. I was 37, and had a wee boy of 18mo. Like you, had anticipated some siblings for him, although having my first at 36 was leaving it later - always risky.
I asked similar qu’s and although had the opp to consult a fertility specialist shortly after dx, didn’t go down that route.
I was told that I had similar options, but that harvesting eggs for storage would take at least two months poss longer - and they didn’t recommend delaying my chemo that long. But I was getting chemo first to shrink the lump given its size … you’ve had surgery first so may have more flexibility?
Re eggs, I was told that there were two options - unfertislised egg storage very high risk of failing anyhow, but fertilised storage much more promising, but not sure the time impact that would have. I was also told that at age 40, my chances of permanent menopause due to chemo (AC) was 50/50, so at age 37, I had a slightly better chance than that. I’m guessing at age 30, your chances are better still, but that will depend on type of chemo.
My choice re zoladex was to join a trial so no guarantees of getting it (could have been placebo), and it would have delayed my chemo a week or two further due to consultation re joining trial etc. By that stage I’d come to conclusion that I wanted to start blasting the blighters as soon as I could, so opted not to join the trial. I got no info - that I can recall - on whether zoladex could cause permanent infertility, and not sure how well it works or otherwise - sorry.
So I took my chances and left my fertility to fate. My periods stopped around chemo no 2/3 (of 6) and restarted when starting my rads, some 4/5 months later. (one of the girls getting same treatment as me age 30 was similar but periods restarted about month or two behind mine) I’ve not had any fertility tests, but with a regular period since, I’m assuming it’s there.
Whether we consider trying for another baby after my two years is up is another matter altogether. Having seen so many develop secondaries, it’s not a decision I will be taking lightly. I had the conversation with my consultant at my first year check as he was moving on and I valued his opinion. I asked if I was silly to consider it, given my prognosis and chances of survival or otherwise. He was quite pragmatic, and reiterated that the recommendation was to wait at least two years (not a scientifically proven time frame, but purely down to the highest risk of recurrence in first two years), and then decide … but also pointed out that nobody knew what lay ahead - breast cancer dx or not - and there were always risks. And in the nicest possible way also pointed out that age wasn’t on my side, so the choice may not be mine to make anyway! So a personal choice, but one to consider carefully.
Sorry this has been a rather long response, but hopefully touched on answers to some of your queries at least.
Good luck with everything; your decisions and treatments. Make sure you take all the help you can get with looking after your wee one, as chemo tired me out a fair bit. Take care,
Ax

4

deleted

5

Very new to this site, but just been reading comments about pregancy and breast cancer. My story - am only just 35 and recently married. I lost my baby at 20 weeks in feb this year and was diagnosed with grade 3 triple neg cancer 4 weeks later (fortunately was caught early and had not spread to lymph nodes). Was told i had to have chemo so underwent IVF to freeze some embryos and then had another tumour in the same area (whether it was rogue cell from primary or a new one nobody knows!). Undergoing chemo right now - unfortunately having every side effect!! and recently been informed that i have to have a masectomy - learning all about reconstructions!!. Just want to get this year out of the way and move on with my life in 2010.

6

Hi Jess

Sorry you’re in this cr*p situation. I was 37 when diagnosed, childless.
Hubby and I saw a fertility consultant but we couldn’t consider fertility treatment (I forget why, now). So I went into the chemo not knowing if I’d be fertile afterwards or not. To cut a long story short, I had a successful pregnancy in 2006 which resulted in a baby girl. Unfortunately I was diagnosed with bone secondaries in 2008 and so am back on the rollercoaster, this time with the reality of not being there for her as she grows up. The only question now is, how long have I got?

When I told my onc that I wanted to try for a baby, he never tried to stop me. In fact in April 2004, after my rads had stopped, he said ‘Go for it’. At no point did I ever get the impression that getting pregnant would actually be bad for the cancer. But now I do wonder if it was the pregnancy that stimulated it back to life. I’ll never know for sure, and really I suppose, now there’s no point wondering about it. I wanted a family. I made that choice. I knew the risk. I must live (and die) with the consequences.

Whatever you decide to do and whatever your options, best of luck.

Alison x

7

Hi everyone,

Thank you so much for all your comments and stories.
I have been gathering information left, right and centre, which is good but also even more confusing! Thought it might help others if I share it.

All in all it seems like you might as well go for zoladex (generalised advise is that it can do no harm but may or may not do any good - the trials have just not been done but theoretically it should help to protect fertility).

With IVF things are a bit more complicated. We finally got an appointment with a gyneacologist who suggested that with one cycle of frozen embryo IVF we’d only have about a 12% chance of a pregnancy anyway, which is much lower than I suspected. Plus I hadn’t realised that IVF was such a difficult process in and of itself and I am not sure I can stomach it following two srugeries in the last month and with the prospect of 4 months of chemo ahead.

The other thing we haven’t got to the bottom of is whether IVF would even be viable given that I have just had a baby. It was suggested by someone that you need to have eggs that have been growing for 6 months before trying to harvest them and I don’t know if this would be the case since six months ago I was six months pregnant! Sweetpea, your story is interesting in this respect - was this ever an issue that was raised with you?

The other factor is the ‘is chemo better sooner rather than later’ question. My oncologist has said better within three months of surgery and we’d be pretty much at or over that limit by the time we finished an IVF cycle so in this sense I think we probably should forget it - as a million people have said to me, it would be nice for Mabel to have brothers and sisters but it is more importnant that she has me! On the other hand, we got lymph node results as all clear 0/8, which is ace, and maybe buys us some time.

The problem is as ever, as you all know, that really it is all maybes and possibilities and no certainties and I just don’t know how to make a decision in the face of that.

Oh, and to top it all off, my PCT has a stalinist one child policy so won’t pay for IVF anyway because we have Mabel, so we’d need to find the cash as well.

Maybe I should just let it go - but have been putting all my energy into worrying about this, and worried if I put it to bed I might go crazy worrying about actually having cancer!

Love and wishes to all of you, and anyone else going through this quagmire of shit.

Jess

8

Hi,

I was diagnosed with B C at the end of 2004 just after my 33rd birthday. My husband and I would love a baby but I have 1 year left of Tamoxifen and Zolodex, and because the cancer was Oestrogen positive I don’t know if it will be possible to even try to get pregnant! My Oncologist says I have to wait untill my 5 years are ‘up’ before I can even think about it, this is very hard to do!

Just wondering if anyone has any successful stories??

Tracey xxxxxxxxxx

9

Hi Jess,

Your cancer is very similar to mine - if your nodes are clear i would definitely do a round of IVF - always good to have peace of mind - all you need is a ‘natural’ period - when i lost my baby i did IVF 2 months later and now have 2 frozen embryos waiting for me. You must also take the zolidex injection - again it is a preventative measure to avoid losing your fertility. Remember you are still young and on the right age of 30. Plus doctors always give statistics, but these are ‘general’ - have faith and hope - you will have that extended family and you will get through the chemo - do some reiki as well - always helps with your general well being and puts your mind in a positive state. Take care and good luck xx

10

jess if your cancer is negative for oestrogen why are they recommending zoladex???

normally for negative cancer, and i presume from what your saying you have triple neg cancer (there is a separate forum on here for that too) they dont treat you with anything hormonal only surgery, chemo and in some cases rads too.

some people continue to get periods through their chemo but some people it stops and it can depend on the type of chemo you get too.

they say the nearer you are to the menopause the less likey your periods are to come back and the younger you are the more likely they will come back.

Geordierose
if you are on hormonal treatment like tamoxifen you usually have to wait for at least 3 months after you finished treatment to try to conceive… but maybe its worthwhile asking what the risks are of stopping tamoxifen early… my consultant said my 1st cancer was so low risk that i could stop tamoxifen after 2 years and was planning to stop this year as started a new job when the two years was up last year… however i got a new primary tumour before i got the opportunity. tamoxifen is used as a fertility treatment too so it can increase your chances of conceiving when you stop it.

the average 30 yr old female has a approx 75% chance of getting pregnant within the first year of trying…
webmd.com/infertility-and-reproduction/news/20040618/fertility-treatment-less-successful-after-35

if you have no kids then its probably worthwhile to harvest eggs for future use… however if you already have 1 child they may not offer IVF on the NHS but def look into it and cover all your options.

Lulu x

11

Hi Lulu,
Yes, you’re right it is negative for oestrogen, so rather than recommending zoladex as a way of keeping my oestrogen down to inhibit cell growth, it is recommended because some studies have suggested that by putting your ovaries into temporary shut down it can be helpful in protecting the eggs from the effects of chemo, since chemo targets rapidly dividing cells, which is why it affects fertility. To be honest I have had very mixed views on the use of zoladex in this way - some gyneacologists say it should work and report good news stories and others say its unlikely to work. I think I have established that it can’t do any harm so might as well try. We have decided, finally, I think, to just get on with the chemo and cross all available limbs that I can still have babies afterwards. It seems that any risk that I may relapse can’t be worth taking given that we have Mabel to look after. Ultimately I don’t want to live (or not live in fact) to regret a choice to delay chemo which might make my prognosis worse. If I didn’t already have Mabel I would certainly do IVF and take that chance though. The annoying thing is that if I had been told up front that the PCT wouldn’t pay for my IVF I would probably have at least consulted with a private clinic weeks ago and could have completed a cycle by now, but because they delayed and delayed now it seems like we need to just get going with the chemo as soon as poss.
Ah well, as you all know, shit happens I guess (I am gathering cliches, my favourite so far being ‘cheer up love, might never happen’ which does not ilicit a very cheery response from me as you might imagine!).
Love to all,
Jess

12

Hi,

It’s very different for everyone!! My tumour was grade 3, 5cm, Oestrogen positive, fast growing and in my lymph nodes so my Oncologist says it’s high risk of returning. I will just have to wait untill my 5 years are ‘up’ and decide then!

Take care xxxx

13

Geordierose,

I’m in the same dilemma. I was diagnosed mid July, had the wide local excision to remove the tumour, sentinel node lymph biopsy and the axillary node sampling. I have been told I’ll have 6 sessions of chemo (FEC-T regimen) startin in the next week or so.

Like you my tumour is oestrogen positive. I saw the oncologist last week and he referred me to the clinic that do the egg freezing before treatment. They told me they can’t do anyhing as i’m being advised to start the chemo as soon as - My nodes were infected with stage 3 cells and was oestrogen positive also.

Unlike you I am 31 and single so it may not effect me as much, but wanted you to know you’re not hte only one with the thoughts going though your mind about fertility etc.

R

14

I am in the same boat at GeordieRose and Reemiechick - grade 3, hormone +ve (although apparently more progestrone than oestrogen), all 23 lymph nodes affected, had mastectomy and been told I’ll be on FEC-T chemo. However, they have been happy to refer me to a fertility clinic (I was pregnant up until Wednesday this week) and our appointment is next week. I have been told there is a chance we can try again a year after chemo finishes and you can take a break in tamoxifen to have a baby then go back on. I’m going to be given it for 10 years so I am glad I can take a break!

I hadn’t heard of zolidex so will ask about that.

I was also told that the short term boost in hormones to harvest eggs wouldn’t be a problem as the chemo would knock them down straight away anyway.

15

Hi there

I feel like I’ve come home! Although I’m so sorry that you are all going through this too, it’s been so helpful to read about other people’s experiences.

I’m 37 (38 next week!) and was diagnosed in April of this year. Initially they said 8cm her2+, weakly oestrogen positive and no lymmph node involvement, then after a scan they shifted the diagnosis to secondary cancer with growths in the lungs. After surgery I’m back to a primary diagnosis with a really good response to the chemo, so I’m hugely relieved but now worrying about fertility (why is it that we have to worry about something all the time?!).

I heard that there was a 30% possiblity of regaining your fertility, but I was expecting menopause in my 40s anyway, so i suspect I may be unlucky. I’ve now had my chemo (6 rounds of FECT) and surgery (mastectomy and reconstruction). This year was supposed to be the year of getting married and having a family. I met my husband just over three years ago and from the start we knew we might have trouble having kids (he’s got a spinal injury which means he has to sit in a wheelchair all the time - not great for sperm!). We were unlucky and were diagnosed shortly after an unsuccessful round of IVF (no fertilisation, no embryos stored). I’m now 2 months post chemo and still experiencing hot flushes and have no periods. Can anyone tell me when their periods came back? How long after chemo? I’m lucky in that my cancer is only weakly hormone sensitive so I dont need to go on tamoxifen, but I guess I won’t be considering pregnancy until I’m about 40 (if I’m lucky).

I know how lucky I am to have the diagnosis I have, and have been telling myself that surviving is enough and I havea really good chance of doing that, but about 11 of my friends are having kids right now, the rest have already had them. It’s a little hard at times.

Flora, I’m so sorry to hear about your pregnancy. What a horrible situation to be in. Alisonm - so sorry to hear about your secondaries. Good luck with the fight.

Love to all
Lisax

16

i wasnt having periods before cos i have a mirena coil in and i suspect that may protect my ovaries in the same way the zoladex as its preventing ovulation so hopefully my eggs will be spared even though i will be 42 when i start trying and have had a 100% positive tumour 3 years ago and 100% negative one this year… so a bit of a mix with regards risk.

bearcat im still going through chemo and because of my mirena i wont knwo if or when my periods come back untill i get it removed.

as for the percentages they vary according to you age… they roughly say a woman in her 30s has a 75% chance of periods returning but a woman in her 40s has 75% chance of them not returning… and even if they do return there is no guarantee you will conceive and the effects of your age on your fertility means your chance of conceiving reduces a little each year regardless of whether you have had cancer treatment or not.

these are the figures we quote to women planning a baby
at 35 66% will get pregnant within a year and 84% within four years
at 40 44% will get pregnant within a year and 64% within four years… i think the figures are much higher than many 40 year old think and maybe accounts for the highest rise in pregnancies and the high amount of terminations in this age group.

hope this helps a bit

Lulu

17

Lisa, thanks for your post, and keeping everything crossed for you in the coming years. It sounds like you have some battles ahead, but it may be worth trying. Will you be allowed ivf on the nhs again due to your tricky circumstances?

I’ve started another thread on this, but have been fortunate to have been given the opportunity to harvest some eggs, get them fertilized and frozen and also have my ovaries suppressed during chemo. We just caught my cycle in time and it will only delay chemo by 1 week.

I know I am incredibly lucky to be given this chance. I’m 36, and had managed to get pregnant twice in less than a year, but both miscarried. Let’s hope that the ivf/icsi process provides some viable embryos and they survive the freezer, but mostly I hope I won’t need them when I am through the other side!

18

Hi Flora and Lulu

Thanks for your posts and for the encouragement and information. I’m really pleased to hear that you could harvest some eggs, Flora, it must be really reassuring to have them. At your age you stand a good chance I would have thought.

I’m pretty sure we’ll get funded treatment on the NHS - we were eligible for two more rounds anyway and I’m sure that will stand. Our oncologist is great and is arranging a joint consultation with their fertility specialists so we’ll have a lot more info then. Thanks for all the stats, Lulu, they’re really helpful. Let’s hope lucks on our side!!

Best of luck to you both. Lisa x

19

Just in case anyone reading this chain needs a bit of good news. I am 8 months post my last chemo (6x tac) and my periods have returned - await blood test in November to confirm actual fertility but fingers crossed that my decision not to go down the IVF route will not have been a bad choice after all. Love to everyone dealing with this horrible horrible journey. Jess xxx

20

Gosh, this is an old thread!

Hi Jess, thats good news. Keeping everything crossed for you.

Unfortunately IVF harvesting didn’t work for us - only got one egg, which wasn’t mature enough and didn’t fertilise viably. So am now keeping everything crossed that Zoladex has protected me (started on it before chemo, and will stay on it for 2 years).

One year down, one to go, before I am allowed a break off tamoxifen and to give conception a go…!