I know it's a little late but wanted to add a couple of comments. One, don't worry too much (as if) about joint and leg pain - I had it for a good six months after my chemo finished (6xTAC). I too was paranoid and requested scans but all ok and it did go away. Two, I am now four years clear, and have had a second child since treatment ( my first was 8 weeks on diagnosis). There is life after, and these days I only really return here every jan due to oncology follow-up induced paranoia!
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Just wanted to add my good news story for you. I was diagnosed when my first daughter, Mabel, was just 8 weeks old, and I had just turned 30. TN Grade 3 2.5cm tumour, but no nodes thankfully. I had two surgeries, 6xTAC and then rads. All horrendous but I got through. I was also given zoladex throughout chemo in hopes that would help to protect my fertility. Amazingly I fell pregnant within a few months of my treatment ending, so I guess the zoladex worked! Sadly I lost the baby but was delighted to fall pregnant again about a year later. My wonderful son is now just over a year, and I am three years clear. I would say go for it. I found this paper extremely useful - http://www.rcog.org.uk/files/rcog-corp/GTG12PregBreastCancer.pdf
Best of luck to you all,
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Just sharing a link to this post I put on a few months ago with an excellent publication on all things breast cancer and fertility related.
Good luck, there is hope. I am due my second baby tomorrow (yikes) just over two years clear from a Grade 3 triple negative tumour - lumpectomy and 6 x TAC and 3 weeks rads- I did get zoladex injections and would highly recommend. My first baby was born 8 weeks before my diagnosis so I am hoping this one will be less of a roller coaster! xxx
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Sorry I haven't been back sooner.
Thanks for your congratulations and glad people have found this publication useful.
I agree - why didn't my oncologist know about it! I shall be presenting her with a copy at my next check up in a couple of weeks and suggesting she pass it on to any younger women who come through her doors! In answer to your questions, better late than never...
I am not getting amuck extra support no, but I don't really feel I need it at the moment. I was referred to an obstetrician at the start of my pregnancy but he didn't have much to say, other than referring me to the very good publication! My midwife has been good and has said I can see her more often if I like (she delivered my daughter Mabel so knows the story well) but unless something goes wrong I don't really need to. I guess the thing is that the complications are not really about pregnancy but rather about cancer so if anyone were to give me extra support it ought to be the oncology team. They have decidedly not done so - in fact, I haven't heard a peep from them, which I have to say surprises me. We shall see what they say as I have a check up in two weeks by which time I'll be seven months. To be fair, however, my cancer was triple negative so there are not the oestrogen worries that others have. Though that said I did obviously develop the tumour whilst pregnant so whether it is really a coincidence remains to be seen. From my point of view I could have done with extra support early on to cope with excessive paranoia - the trouble being that all the symptoms they say you should worry might mean a reoccurrence, are much the same as the symptoms of pregnancy - tiredness, aches and pains, back ache, shortness of breath etc. Still, I am mainly calm now (despite impending two year deadline!).
To answer about my periods - yes they did stop during chemo - and started again about six months later, whereupon I got pregnancy almost immediately and then lost at about 10 weeks. At that point incidentally the BC nurses were very hands on and gave me lots of extra support - they met me at 8am on the morning of my D&C operation to hold my hand and mop up tears.
Anyway, this time all is fine, bar being exhausted and a bit paranoid. Fingers crossed it stays that way.
Love to you all, Jess
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I am just posting a link to a post I wrote in October with a brilliant publication on all things breast cancer and fertility/pregnancy related that is in the younger womens forum. This pregnancy specific forum didn't exist then and I have only just seen it - seems like it'll be most useful to some of you here.
My own pregnancy is going well - six months now and hoping to make it through my two year clear check in a couple of weeks without incident.
Love to you all.
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Having recently found out I am pregnant approx 18 months after my treatment finished (lumpectomy, 6xTAC, 15xrads) I was referred to the consultant obstetrician at my local hospital. He referred me to this publication from the Royal College of Obstetricians and Gynaecologists which provides evidenced-based advice on breast cancer and pregnancy, either in relation to fertility preservation, impact of chemo or on getting pregnant thereafter.
In short it answers all the questions I tried to find out about when I was diagnosed - see the older thread on Fertility & Chemo for the full story. I would have hugely benefitted from this publication and its matter-of-fact presentation of the medical evidence at the time, so i thought I'd share it with you all, in hopes it helps some of you avoid the confusion and trauma I experienced when diagnosed. You can find it here - http://www.rcog.org.uk/files/rcog-corp/GTG12PregBreastCancer.pdf
To flag a couple of things - firstly, quite contrary to everything I was told/read at the time, it suggests that even oestrogen +ve women do not not need to necessarily avoid pregnancy, I quote:
"Women can be reassured that long-term survival after breast cancer is not adversely affected by pregnancy.
Since many breast cancers are estrogen receptor positive and endocrine responsive, women used to be advised against pregnancy because of concerns that it would worsen prognosis. However, the evidence from the published studies is reassuring, showing either no impact on survival or improved survival. (!!!!!! - my exclamation marks). Despite the limitations of the studies, which are mainly retrospective case–control series with limited numbers,they at least demonstrate that outcome after treatment for breast cancer is not adversely affected by pregnancy."p.6
And secondly, regarding the use of GnRH analogues (like Zoladex) to protect against infertility during chemo, although it acknowledges there is insufficient data at present to draw firm conclusions, it also says, again quoting "A recently reported randomised controlled trial in premenopausal women with breast cancer found that co-treatment with GnRH analogues during chemotherapy lessened the risk of ovarian damage (35/39 resumed menses versus 13/39, P < 0.001)." Page 9. This is pretty impressive results, even if it is only an early study. I certainly warrant my returned fertility to being given Zoladex injections throughout chemo (though I also now learn from this publication that perhaps my chance of losing my fertility was always only about 5% given I was only just 30 when diagnosed, and given that I was given a Taxotere chemo regime which also seems to be better for fertility preservation!
All of which would have been very useful to know at the time! Happy reading folks.
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Just wanted to put some good news on here for anyone who reads this thread looking for info on fertility.
I started this thread just after I was diagnosed, when my daughter was just 8 weeks old.
My tumour was 2.5cm, grade three, triple negative, no nodes. I had a lumpectomy, 6 x TAC and 3 weeks of rads, finishing treatment in Feb 2010.
I was very concerned about my fertility throughout as you'll know from the preceding thread and pushed hard for all the options to be kept open for me. My periods returned in about July 2010, and I fell pregnant quite soon after, though sadly lost the baby at about 8 weeks. I think my body was not ready to cope after the treatment bombardment.
One year later I am pleased to say I am 14 weeks pregnant, with the baby due in April, exactly three years after Mabel was born. I am hoping this time round it'll be a bit more straightforward and that without chemo I may actually experience and remember some of my next baby's first few months!
So my message is really that there is hope for some of you. Chemo is not necessarily then end of you chances - of course for me because I was triple negative the oestrogen issues did not arise.
I have no way of knowing why I was lucky with my fertility but I would recommend to people that they push their oncologists to let them have zoladex injections throughout chemo - the theory being that this 'shuts down' your ovaries temporarily so that the chemo does not attack the cells as it otherwise would (which is what results in infertility thereafter). I pushed for and got this (despite the drug not be licenced for this) and I credit it with my current pregnancy (only anecdote I know, but it has to be worth a go!).
Anyway good luck anyone going through this rottenness - there is some hope. Love Jess
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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
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Em - my train gets in at 8:55 I think so happy to meet up with you/ anyone else and share a cab - I can't think of a really obvious place to meet at Bristol Temple Meads other than just outside the front entrance which is basically where the taxis go from anyway. How will you recognise me? Well, I look like I have recently had chemo (!!!) - overweight and with a head scarf. Fabulous.
Seems like some of you guys already know each other - how come?
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I'll be there too but getting the train up on Friday morning from Taunton. Will keep an eye out for headscarved ladies at the train station to share a cab with. Or maybe walk if it is not snowing! It's only about 15mins from the station on foot.
Re clothes I was planning casual casual all the way but maybe I'll sling in a pair of heals just in case eh? I have just finished rads and was told it's probably best to avoid the chlorine in a pool - anyone else told that? I quite like the idea of loads of baldheaded swimmers - like the witches on holiday!
Really looking forward to meeting you all,
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I too was diagnosed whilst breastfeeding - my baby was just 8 weeks when I found out. Moved her to aptamil eventually, but continued to breastfeed from the other boob throughout two surgeries (this was quite stupid of me in retrospect but I felt so guilty about giving up - crazy really). So so long as you are confident in your surgeon you can still keep feeding - but bear in mind that there will be a lot of milk around in the surgery (it is hard for the brain to stop producing milk from one and not the other and I only had about a week's notice to stop on that side). Also though, my lump was 8cm wide and still I only had a lumpectomy (I have big boobs, yes) - luckily the malignant bit was only 2.5cm, but my point is that they should easily be able to remove a lump that size without any bother - if not, I'd ask for another surgeon!.
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I had pretty much the same diagnosis as you - triple neg, grade 3, and was worried about fertility also. My advice is to keep pushing it as with me it all got too delated and was too late in the end. You need to really push to get on with IVF after surgery or otherwise it will be coming up time for chemo and then they start to pressurise for that and don't like you to delay for IVF so, best to just get on with IVF as soon as you can if you are goig to do it.
Best of luck on the 14th,
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Sounds like you're going through much of the same dilemmas I did just a month ago. My siutuation was almost exactly the same as yours - one baby, triple neg. Have a look at this topic discussion which I posted then - it might help a bit. http://www.breastcancercare.org.uk/forum/fertility-and-chemotherapy-advise-pleaseǃ-t22794.html
To be honest though the thing I found was that it is almost impossible to actually get a proper/solid view on things. There are so many questionmarks. My advice - get referred as quickly as possible to a specialist fertility centre - don't know where you are based but either London or Birmingham seem most recommended - though I spoke to someone at Manchester. Am happy to pass on names/details if it'd help. Don't wait for your PCT to do anything as it might end up being too late. Choice in the NHS means that you have a right to see aa specialist wherever you are so be pushy and get referred. You'll almost certainly have to go private for eventual treatment though, since you already have one child, the PCT will be unlikely to fund you (I know, stalinist, isn't it?).
In response to your specific questions, from what I have gathered:
Can't comment on the freezing as decided against in the end, but by all accounts not a lot of fun. I decided I couldn't face it having just had two surgeries and about to have chemo, but actually the chemo hasn't been that bad so far (touch wood) so maybe I'd have been fine.
Re delay, I asked this over and over and couldn't get a straight answer - i think they just don't know. My oncologist said there was eveidence of chemo within three months of surgery being better, but that's a bit arbitrary since it depends how far advanced you were at surgery so... Either way the main thing is move fast. By the time I'd tried to establish all the answers I could have done a cycle of IVF if I'd moved faster but instead I missed the boat. The other key issue has got to be your lymph node results - if these are clear I think it is less of a risk but if you have nodes that are affected then maybe best to just get on with chemo asap. The trouble is there is no way of knowing whether you are the one who needed it sooner rather than later. My husband decided for us really in the end, he pointed out that i'd regret it more if the cancer came back and i had delayed for chemo (even though the causality would always be unkown) if that risked my life with Mabel, than i would feel regret about maybe not having another baby. But really if i had just got the timing sorted i could have done both. So again, move fast.
Your third q is a good one that i hadn't thought of - i'd guess logically it might, but maybe zoladex afterwards might negate that? The other thing is though that zoladex for this purpose is very much unproved and experimental (not the impression I was given by my oncologist incidentally).
The logical answer to your last query is no, though i have heard of some people having trip neg then recurring with a positive cancer so i guess there is always a questionmark.
Let me know if you have any other questions at all, as I have asked most and gathered a lot of (though often contradictory) advice.
Good luck with it all, and keep us posted.
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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,
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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.
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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!
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