Hello all
Not posted on this board before, but long time lurker and now on the lovely Tamoxigang thread.
Brief back story is, DH & I have been TTC for 5 years or so and had our first round of IVF in January which failed. Shortly after that (day before starting next IVF cycle argh!), I found out I had breast cancer. Thankfully, that's all in hand now, had the surgery and don't need chemo - for which I'm so grateful.
However, we'd still like to do an egg collection before I start radiotherapy in a month or so. I'd have to freeze the embryo and look at a frozen transfer in a couple of years - taking a break from tamoxifen as I can't be pregnant whilst taking that drug (which I'm told will be prescribed for 10 years).
Has anyone been in this situation? Am struggling to get answers at the minute - oncologist is effectively saying to me 'don't be daft, you're life is too important' and fertility clinic don't know what to do and are following oncologist advice - as you'd expect. My cancer was oestrogen receptive which is why I'm in this situation so maybe we need to accept this is over now and forget IVF in any way shape or form?
I'd be really grateful to hear from anyone with similar experience.
Thanks all
Our Infertility Support forum is a space to connect with others in the same position, discuss causes, treatment and IVF, and share infertility stories of hope and success.
Infertility
Cancer treatment and IVF
WinoHamster · 13/05/2015 17:04
Hi Hamster, thank you for your kind words too. It is very hard being diagnosed with a disease when you are already in a huge fight trying to get pregnant. Suddenly you have to focus on a different fight and process that, whilst also dealing with the disappointment that you are even further from the goal that you've been focusing on for years.
It must have been terrifying to have been diagnosed with breast cancer and with such awful timing. That must have been devastating. It's all the more cruel to get such bad news at a point of hope that your fertility problem might eventually be solved. Your consultant sounds amazing 
Please don't feel selfish or ungrateful for pushing for answers though, that's crazy talk woman! Your treatment is so recent but I understand you bouncing back quickly to try and solve your original problem. You have a small window before your next treatment to organise anything so you're doing exactly the right thing by pushing for available options now. Also 5 years is a long time trying and that's hard to let go, I know.
I felt like I was living in a bad dream when I was diagnosed but after a week or so of letting the news sink in I was back to being like a dog with a bone on the infertility front. I contacted my consultant to beg for my eggs to be frozen prior to treatment (I thought my eggs would be too old after treatment). This triggered an interdepartmental meeting between the consultants and against all odds and I believe contrary to anything they'd done before, I was allowed to continue with the ivf and put the hepatitis treatment on hold.
They said this was possible because I was healthy and had a low viral load. I was also clueless about what hepatits c was prior to being diagnosed. It’s a disease with stigma which in itself has been difficult to come to terms with. The majority of sufferers are injecting drug users (yikes!) and the rest are unknown or from blood transfusions prior to 1984. I was actually given blood in an operation before this date and they traced the donors of the 4 units of blood, even testing a frozen sample for a non-returning donor and they were all clear so I have no idea how I contracted it. It's amazing how quickly you adapt to the roller-coaster though. I was shocked and very grateful to be allowed to continue with the ivf.
I really hope you get some clear advice and that it’s in some way possible (and safe) to do perhaps a mild stimulation cycle and have some eggs collected prior to your radiotherapy. Is the course long? You’ve been through so much and at the very least this would give you a positive to work towards as you get through your radiotherapy treatment. I have my fingers crossed for you x
Hi again Zippy
So pleased that you can do a round of IVF - you must be so relieved! When do you start? Will you be doing the transfer too or just retrieving eggs for a frozen transfer after treatment? The clinic must be comfortable it's safe to leave the hepatitis treatment for egg collection so at least that's one comfort. I can't imagine the shock you must have felt on diagnosis - I must be honest, drug use etc is what I associate with hepatitis too. At least when I was diagnosed, I had a lump on my boob so had a little bit of warning!
I've only done the one round of IVF, but if it's your first - honestly, just ask any questions at all. Other than the scariness of doing the first injection on my own (when I cried 
) it was fine and I'd do it again in a heartbeat.
I'm expecting radiotherapy to start in about 3 weeks' time. It only lasts 3 weeks but then I have to start taking tamoxifen which is where the pregnancy problem is - the drug is incompatible with pregnancy. I'm back at another clinic tomorrow to discuss again. God knows how they think I'll cope using contraceptives - it goes against everything DH and I have been doing for the past 5 years!
I'll keep everything crossed for you and thanks again for your kind words - these things are just to hard to discuss in real life x
Hi Hamster,
Sorry I feel like I’m drip feeding information but my last post was so long I didn’t want to waffle too much! I was diagnosed with the hepatitis 1 + ½ years ago so I’ve so far had 3 rounds of IVF (although the first was converted to iui due to poor response). I agree, initially IVF was really daunting, the injections (filled me with dread), the not knowing what was happening with your ovaries between scans. I’m a bit of a weird hypochondriac person when it comes to drugs, (I feel dizzy if I take a paracetamol) so on my first round I imagined my ovaries were going to explode and phoned up the clinic on the verge of tears. OH the humiliation when later I turned out to only have 2 eggs growing
Now I could do IVF day in and day out if it would get me a baby. I don’t even mind the injections any more. Unfortunately we’ve not had any success yet. We are currently reeling from the latest bombshell that my husband’s sperm is lacking a protein necessary for fertilisation (after zero fertilisation in 2 ivf cycles) My mc was actually 8 years ago, we just took a couple of years off before trying again, but obviously his sperm worked at some point! We’re waiting for an app now to discuss this further. I’m pretty depressed that the last 6 years have been a total waste though and not entirely sure where to go from here 
How are you feeling about the radiotherapy? It sounds very scary to me and although 3 weeks is not a long time if you’re on holiday in the Maldives…it’s a fair old slog if you’re feeling poorly. Do you have a sympathetic workplace? I hope you have some good support around you. That is an utter godsend that you don’t have to do the chemotherapy, what a relief for you. You sound really upbeat which is amazing because I know even with the infertility it’s tough to stay positive sometimes. I did smile at the contraceptives. It was the same for the hepatitis drugs not being compatible with pregnancy and I still have the microgynon in the cupboard! I was very luckily thrown a lifeline at the very last minute so didn’t have to use them but it just felt completely ridiculous to even consider taking them!
I know you’ve got an appointment tomorrow but what have your oncologist and fertility consultant said so far regarding you having children? I don’t know how old you are but 10 years is a long time to wait. Do they have a plan for you or do they just want you to give up the idea of having children to keep your health safe? I know I was devastated at the prospect of a 1 year wait so I can’t imagine being faced with this. Why can’t it be simple? Boy meets girl they don’t have to have sex solidly for 5 years they have babies etc etc…
I hope you get thrown a lifeline tomorrow. This is all so tough and you’ve been through so much already. I really hope there’s a way x
(sorry for the essay again!)
Wow options. That is exciting and surprising! I felt sure they would want to play it safe and not take any risks with you. I think it’s amazing that they appreciate what a huge deal trying to become a mother is. It actually makes me emotional that these trained professionals get together and pool their knowledge to work towards a solution in your best interests. How bloody great and the more experts the better! 
So the chemo instead of the radiotherapy to avoid the tamoxifen is interesting. Would you have to do the egg collection before the chemo? Did you respond ok to the IVF egg quantity-wise? I understand why you would suffer the chemo to avoid the restrictions of the tamoxifen and more delay but I’ll tip my hat to you anyway for being hard as nails
The radiotherapy and 2 years of tamoxifen followed by a frozen transfer is still a good option though if they decide that’s better. It’s a bit of a nightmare with more waiting but good to have something promising to work towards. How do you feel about the donor egg option? I’ve been recommended to try donor eggs due to my age (40) and due to my ovaries reluctantly only coughing up 2 eggs per ivf cycle on max stimms. I was pretty much ready to take the plunge (there’s a lot to consider) when we got the sperm result. Now it feels more difficult to move on to donor when I feel like my eggs haven’t been given a chance yet.
Yes I agree you would think, great, a problem that can be fixed but the sperm issue can’t be fixed by ICSI alone. The eggs also need artificial activation (AOA?) because this is what the missing protein does (PLC zeta if anyone reading wants a google). This lowers the fertilisation percentage and when there are only 2 eggs it might prove to be an expensive experiment for us to try. I am glad we found out before getting to donor eggs though and seeing zero fertilisation. They’ve also suggested donor sperm as an option but my mind is just boggled with it all at the moment. Sometimes you just need a few weeks off to re-group and get your va va voom back for more trying and that’s where I am now.
Anyway, I’m utterly thrilled for you that you have lovely experts .…and options to think about .…there’s hope! x
Well, what a weird rollercoaster of a few days. Third oncologist on Wednesday confirmed it's no problem to do an egg collection and has said it can easily be fixed by an extra few days of radiotherapy! So no chemo - thank god! I really am one of the biggest wimps on the planet, although I do appreciate you thinking I'm hard as nails 
So, here I am, having started injecting gonal-f last night. DH and I are genuinely beside ourselves - far too many tears than is rational, especially considering our age now and the fact I'll be 43 at transfer. Our plan is frozen transfer in 2 years and if that fails, then one cycle with donor eggs so that at least we've had 3 bashes at IVF (however unconventional!). We did ok with our last IVF attempt - apart from the minor point that it failed hmmm. But, we had 7 eggs fertilised, 6 of which made it to blast. One transfer, but unfortunately, the others weren't good enough to freeze.
Just had a quick google of PLC Zeta. Blimey - that sounds so technical, but it does seem good that you found out before using donor eggs and DH sperm? And really good that your clinic didn't automatically lay the blame on the eggs for non-fertilisation which is what seems to happen at our age! I can't imagine forking out £10k for a donor cycle for it to fail for the same reason as failure with your own eggs. Is there an option of adding this protein and still having a go with your own eggs? Would you consider donor egg round after that if it's needed? I completely understand that you want to feel you've tried everything before going down the donor route.
I think if I'd been asked 2 months ago about donor egg after failure of the first round, I'd have said I wouldn't want to consider it. But now, donor egg is certainly in our plans. This infertility crap throws so many issues, that I think DH and I have needed to be creative and look at all options. One of my lovely friends has been down the long IVF road (including donor sperm) and now has 2 adopted DCs. Her motto is they're still my children, doesn't matter that I didn't carry them, I'm the one they run to when they need a hug or want praise for an achievement. Certainly, adoption isn't for me (watch this space ha!), but I think having carried an embryo (however created) could only add to the feeling that the child is mine/ours.
Please don't feel I'm trying to give you unsolicited advice - I think it's possibly that I'm a bit closer to accepting the 'donor' element? For me, it actually seems like a sensible life line and if we're going to throw everything at the last attempt, I'd rather do that with statistics of 40% than 5% if I used my own eggs - I'm crap at maths, but that looks pretty good to me
I really wish you all the best and hope you can make the right decision soon - keep me posted xx
OP - just wanted to wish you (and other posters) the best of luck. Cancer and fertility are strange bedfellows. We had just completed donor egg cycle 2 last year (I was 43 and OE cycle was a bust hence DE choice) which ended in a miscarriage when my husband was diagnosed with bowel cancer. After the initial shock and the op, we had a week to decide what to do before he started chemo. He was against trying again as it had been miscarriage 3 and the cancer was taking it's toll but I 'nagged' (hard to nag a cancer sufferer but I felt that he'd regret it). In that week, he had sperm frozen and we did it all again in November. Our poor daughter (not IVF) must have wondered what the hell was going on with all the hospital trips, drugs and moods.
Anyway, I'm due DC2 in Aug and husband is so glad I nagged. Literally, he has a new lease of life.
The point of this is to say that the fact of cancer does not mean it won't work out for you. You're brave and definitely deserve a few years of sleepless nights .
Good luck again.
Hamster what an incredible rollercoaster you've been on really, it's no wonder you and your dh are emotional. It's totally amazing you're now doing an ivf cycle when a week ago you were being told it wasn't possible. I know it's just to egg collection point but that in itself is just brilliant 2 years seems long but hopefully the time will fly for you and it's great you've got something to look forward to after such a tough time recently. Thank goodness on the no chemo front too!!
Thanks for sharing your thoughts on donor eggs. I was the same, it wasn't something I would have considered years ago but you do open your mind more after years of struggling when things aren't easy and straightforward! The more I think about it the more in awe I am at women who donate. They are donating something so personal to them to give other couples the chance of a family. It's pretty amazing of them to do that really, and pretty amazing genes to have passed on to your child too.
It is what we want to do but the sperm diagnosis has just thrown up lots of emotions I'm now trying to work through. The doctors did blame my eggs for the fertilisation failure; they've blamed my eggs since the 1st poor response to ivf. The embryologist just felt sorry for me so put my dh through to be part of a sperm research study. That's how the sperm issue was diagnosed and I think they were very shocked when it transpired there was an actual issue. Apparently failed fertilisation only happens to 1-2% of people. So if we managed to hit those odds... what do you think the chances are of us hitting the odds they gave us of a successful ivf cycle (also 1-2%) ?
In my rational mind I know my eggs are probably goosed but I'm just angry and frustrated because I feel I've never had a proper chance with them. I know my problems could be much larger so sorry for moaning but it’s just how I feel. I wish I could just switch off the emotion and move on. I'll work through it though.
To end on a positive note I think this is all going to end really well for both of us, it’ll just take a bit more time! (I wonder if we’ll get cuter babies as reward for our perseverance… )
Resipsa I’m so glad that your dh is on the mend after what must have been the scariest of times, and that everything has worked out so well on the fertility side too. Huge congratulations on your well won pregnancy
Hi again and thanks for your comments and thoughts on this.
Resipsa - what an amazing story, thanks so much for sharing and massive congratulations! Hope all is going well with your pregnancy. You must be so relieved your DH caved (just goes to show we're always right ).
Zippy - I'm not surprised you're frustrated. At our age we don't have time for clinics to faff about while they eventually find out what is causing the problem. And I'm sorry the clinic did blame your age - I thought they'd picked up the problem earlier which is such a shame. It does make you wonder if the 1/3 of us that are 'diagnosed' as unexplained should do a bit more foot stamping to try get to the bottom of it! I can't imagine the roller coaster you're on at the minute whilst you make the decision whether to go down the donor route. At least for me the decision is out of our hands - so that's one positive to the cancer I love your comment regarding the women donating eggs! Daft as it sounds, I hadn't given it much thought (selfishly), but you're right - they're amazing women who must have amazing kind/selfless genes to pass on.
I'm not doing so well this cycle though which is a shame. I'm doing the exact same protocol as 3 months ago but on day 7 now and only have 3 follicles of a decent size so unlikely to get more than 2 or 3 eggs. And of course the clinic think this is because I'm 3 months older - this is probably true but I don't want to hear it as you can imagine!! We're going to see how this pans out - still go to egg collection (even though it's borderline for cancelling the cycle under normal circumstances) on the basis that it's probably our last chance with own eggs. I am kind of glad that we'd come to accept that a donor egg is a real and viable option. And seeing Resipsa's post has given me some hope and comfort over the past day or so too - knowing that this poor response cycle doesn't mean it's dead in the water yet.
How spoiled would these babies be if/when they eventually arrive?! I dread to think!!
Hi Hamster, that’s disappointing on the egg front this cycle I’m sorry. I’d be a bit cynical about it being due to your age though when your last cycle was only 3 months ago!! I’ve heard your available follicles can vary from month to month so that might explain the difference, who knows really. It bodes well though that so many of your eggs made it to blast in your last cycle and it only takes one good egg/sperm combo to make a baby! so here’s hoping you have a little sturdy one (or 2!) in the making now
You did make me smile on your looking on the positive side of the cancer comment (taking the decision out of your hands). I was talking with my sister on the phone the other day about the infertility and I can’t remember what I said but there was a brief pause before she said, ‘yeah alright Pollyanna!’ I’d been looking on the bright side. Made me laugh at the time and you’ve just reminded me of it now being very much a Pollyanna yourself!!
I’m still dithering about the next steps at the moment. I’ve had some crazy thoughts about ordering sperm off the internet . We really need to sit down and discuss our plan of action and how we’re going to pay for it. How much debt we’re prepared to get in will probably determine what we do next.
I wanted to say thank you for the chat over the last wee while. I don’t discuss my infertility with anyone bar my sister. The hepatitis isn’t something I can discuss with anyone either so I feel like I’m carrying around this big bag of secret grief with me all the time, I’m even usually a lurker on these boards. It’s been hugely therapeutic to be open with you and to hear your perspective, thank you x
I am keeping my fingers crossed for you that egg collection goes well x
Hi again Zippy - sorry for the late post on this. My life is a crazy mess of hospital appointments (zipping across counties to different hospitals!). In between popping in to work and trying to do a bit of work - badly though, as I'm not convinced I'm giving it 100% at the minute ha!!
I had the egg collection on Saturday and the amazing doctor collected 8 eggs from 8 follicles - the clinic really were outstanding. It's a shame, but only 2 fertilised but they survived and are 'top grade' albeit early ones - day 3 this time. But, that means at least we can have one FET in a couple of years. I go back to my NHS clinic (private paying though unfortunately!) next week to chat through the results. I'd love to try another collection, but I don't think it's feasible - DH is ready for strangling me for pushing things to the limit!! So, plan is a FET in May 2017 and try have a donor egg lined up for 3 months after that if it doesn't work. I can only be off my cancer drug for 12 months starting May 2017 so got to pack it all in
I think in our position we have to be positive - but I love it that your sister saw that side to you too! I think for me, a lot of this down to the people around me - we hadn't mentioned IVF to anyone really, but with the cancer, I've told a few more and I've been amazed how fantastic people have been. Our fertility clinic have also been superb - the support has been way more than I'd ever expect, to the extent I get hugs and tears from the nurses and even the consultant! They all seem like they really want this to work for us which gives you positivity - and makes the whole thing so much easier.
I really hope you manage to come to a decision soon. We're paying for ours too, but to be honest we're thinking this is the chance we have so we have to find the money. In all honesty, things like pensions are massively on hold (or non-existent!!) for us. Our theory is that if we have children, we'll be so delighted the cost/debt won't matter - and they can pay for us later in life!! If it doesn't work out, then we downsize and look to sort out our future that way. We're fee-paying through an NHS clinic which is much cheaper than straight private - not sure if that's what your doing?
Thank you to you too - I genuinely mean it's been a massive help to me posting on here and having someone 'listening' who understands why I'm still pushing TTC despite other issues. I'm much the same as you - have lurked for years and years and only recently started posting when all this came to a head. I love hearing how you're getting on though x
Hi Hampster,
Sorry it's taken me ages to respond. I signed up to a study thing last year which I'm really behind in (no concentration or motivation!) and a sporting event this year which I'm really out of my depth with but is taking up a lot of my time! I was sick of putting my life on hold for ttc but now ive too much on my plate! I'm also replying on my tablet so excuse typos
That is great that you have 2 top quality 3 day embryos to look forward to! Roll on may 2017 It made me smile that your dh is stressing on your behalf, that's so sweet and just how it should be. You are a woman on a mission and need someone looking out for your best interests while you are focussed on your goal! You are certainly making the most of your restricted alloted time too! What pressure. Hopefully the fet works but are you set for a UK donor if not?
We have actually come to the top of the waiting list for donor in the uk, hard to believe after we were told the waiting list was 2 years. Pretty sure it hasn't been 2 years... The notification letter came complete with sniffing drugs about a week after we were told about the sperm issue. Struggling to process it all actually.
Still dithering over what to do. At this rate I'll be your cycle buddy in 2017 We're contemplating donor egg abroad because their matching process is more specific, and cost too but there's the anonymous factor to consider. Bar YouTube videos I can't find a good resource on how donor egg children feel about it all as they're growing up. Its a huge responsibility and I want to make a good choice for my future child. Its so difficult. Still also mulling over own egg ivf abroad but even in light of the sperm issue my clinic are still hopelessly pessimistic about my own eggs. Our recent appointment to discuss this was grim and I cryed all the way back to work
I agree its hard to give 100% at work, more so for you of course with the shock of the cancer too. I used to do my job as 1 person and now there are 2 of us and still I feel like I'm losing my grip on it. Not helpful for the self esteem! I try to remind myself I'm easily replaceable and its just a job. I'm not sure that helps but I do it anyway
I'd better send this before the internet fairies steal it away (I hate when a post vanishes!). Its been lovely to hear your update. It would be nice to keep in touch. If I could be sure you didn't know me I could pm you my email address? [Wink] I'm Scottish...
Otherwise I think I may be on these boards for a while and time in TTC world does seem to race by when you don't have much of it left so I'll keep an eye out in early 2017 and be here to cheer lead on your behalf
Well done for making it through what you have to this point, you couldn't have done more x
Hi again Zippy
Sounds like you've got a lot on your plate at the minute with study/sport! Hope they're going well? I'm so sorry to hear your clinic's pessimism about your own eggs - do they know why? I'm guessing it's the usual 'age' issue that no doubt we're both fed up of hearing.
Did you make a decision on the donor egg situation? I'm amazed how quickly you got to the top of the waiting list - I thought it was 2 years or so in the UK too. It's good, but I can imagine exactly why you're dithering! I'd be doing the same too, thinking I'd have a good few months to decide what to do.
What a lovely thought, trying to make sure a future child wouldn't feel affected due to its donor status. You come across so caring and thoughtful - I'm sure that would be so apparent when rearing a child, whether yours biologically or not. I had thought that we'd be open and honest with any child, but as DH said to me - it's only one cell that's been donated I know that's not strictly true, but it helped me and made me smile!!
We've just had a very much needed week away before I start radiotherapy but met with the fertility clinic recently to discuss the 2017 transfer (honest to god - talk about me trying to push time forward ha ha!!). I'm glad we did, because I need to discuss with my oncologist the potential 12 weeks oestrogen I'll need to take. I'm dreading discussing it as I know it's not going to go down well at all! I'm only allowed 12 months off tamoxifen, so have to do my transfer and donor transfer within 3 months of each other to allow time for pregnancy too (all being well). I'm going to discuss with another clinic waiting times to line up a donor egg to make sure I can get it quickly if mine fails. But, I don't really want to spend £10k or so getting a donor egg embryo in the freezer just in case mine fails (although I'm sure I wouldn't care about the £10k if it did), but I need to be realistic. You made a good few points about clinics abroad - did you make any decision on that yet? I'm seriously tempted to try either Barcelona or Cyprus - much as I'd make sure any child knew its donor status, I think I'd prefer a completely anonymous donor.
I'm pretty certain we don't know each other in rl (assuming you're still based in Scotland??). I'm south of the border - don't want to say where on line, although I suspect I've given enough detail to be recognised! Hello anyone who does recognise me!! It would be lovely if you pm me and take this off line and I don't need to worry too much about giving details then.
Take care xx
Hi Hamster,
Yes the donor thing came around a little faster than I’d expected. I think the 2 year mark would have been November this year so even with it being a dummy cycle it’s certainly a few months quicker than expected! I’m so conflicted though at the moment so the extra wait would have been useful! I’m waiting for the all clear on the hepatitis C before I take any next steps. I had a blood test over a week ago and am nervously waiting for the amazingly lovely nurse to email me the results…
There’s a small percentage of people don’t get cured from this new super dooper drug they’re using now but I seem to catch the small odds… (hubbys sperm…the hepatitis C…gah!) so am taking nothing for granted! But if I’m not clear then that would rule out any treatment abroad so something to consider. Part of me is of the same thinking as you now though that anonymous donor would be better. I’d love a known donor like a friend/relative but I don’t have anyone suitable. I have a very sweet cousin in America who has offered but she’s 38 and I think it would cost a mint for very little success so that’s out
There’s something that makes me slightly uneasy about the 18 year wait to find out who the donor is if it’s uk donor… I’m ok with the child knowing the donor from the start but I’m wondering if that 18 year scenario adds a whole big thing hanging over our family that would be too weird? It might be easier for everyone including the child if that door wasn’t there? I’m probably overthinking it. I don’t know.
Your 3 month window (plus 9 months pregnant!) really is hard! That’s a huge amount of pressure. I don’t blame you for getting started now gleaning any information that you can. You have to as you have an exact and finite amount of time to play with especially when you’re timing things around your period. Hopefully your FET will be successful, that would be amazing and simplify things of course. I’ve not contacted any clinics abroad yet but from forum searches I think it might take 6 weeks from first contact to getting a donor cycle going. Hopefully you could start the ball rolling prior to reduce that a little, maybe as you’re going through your FET just in case? Obviously you don’t want to spend 10k on something you don’t need though! It’s a huge amount of money.
I’ll send you a pm, it would be lovely to keep in touch and hear how you’re doing. I really want to hear your happy ending however that takes shape, and it will! All the best for your radiotherapy, I’m sure that will be scary but good to get over and done with.
Zippy x
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