FERTILITY - HELP - DOES ANYONE KNOW ANYTHING?

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Been to see Oncologist today for a follow up to Chemo.

THis appointment I had more questions around the issue of fertility and more research that I’ve done.

I pointed out tothe Oncologist that it is her primary funcion and role to ensure that I am treated properly and that I don’t have a reoccurence of cancer, but that she isn’t a fertility expert and can only give her opinion on what is likely to happen but that as i’m considered young that there isn’t much research/statistics into maintaining fertility. She agreed with me.

I said that though I’m aware that its a slim chance my fertility will be kept due to chemo (bearing in mind I’d already had problems) that I’m not reaDy to give up just yet and want to ensure I’ve explored every possibility so that I can be psychologically asSured that I’ve done everything in MY power to exhaust the options to my satisfaction.

The issue from the oncologists point of view is that they do not want to risk me having any hormones in my body after treatment because that hugely increases the risks of reoccurence of cancer.

She has said that plain speaking - if I get the cancer back then chances are it will kill me. Which was a shock as I thought chances were about the same even in a reoccurence. That knocked me for six but I’d rather she was honest with me.

If I do egg retrieval then ovaries have to be stimulated using hormones - not a good idea potentially as I hyper stimulated on clomid, this would flood my body with hormones. It does mean we could use a surrogate to carry our baby but as I’m sure you’ll all be aware, it’s a very slim chance that will happen unless it’s someone we know and that is a BIG BIG BIG ask.

If I get pregnant - this will flood my body with hormones for 9 months and could kill me if the cancer comes back.

I could have 2 years of Tamoxifen which they will put me on to put me in an untreatable menopause and then see what the situation is but would prefer to do it for 5 years, if you get past 5 years clear, chances of reoccurence go up to 86% but practically impossible for me to concieve or that eggs will have surivived or be useable by then as I’ll be nearly 40.

I’m going back to see the fertility expert specilaist that I was seeing before for his opinion and to find out if theres anything at all I can do.

I’m also getting referred to the clinic to test for BRCA Markers which test to see if this cancer is genetic - if it is then I’ll have to consider a double mastectomy and an ovarian abulation (removal of ovaries) to be ultra sure it doesn’t come back.

Theres a hell of a lot to consider - until I know exactly where I am and seen specialists I’m not making any firm decisions.

Primarily I have to ensure that I survive and it doesn’t come back ever.

My major concern is that I need to be SURE I can’t have children before I make any other decisions that may put my life in jeopardy - if I’m not prepared to do my utmost then I wouldn’t have been a good mother would I ? :wink:

My OH and me feel fairly raw and very emotional about this whole fertility process - we both so badly want our baby and after the miscarriage and nearly getting to IVF stage, it’s just such a blow to have to make such horrible decisions.

I’m finding it hard to be honest - I’ve imagined what our baby would look like, them growing up, their personality, I know this is a bit mad because you’d never *know* that - but I have a strong sense of it that is hard to describe, I feel like this is MEANT to happen, that there is a gap in our lives waiting to be filled with the joy (yes and the sleepless nights, lack of money and panic that is parenthood) of our child. I am positive it’s in my destiny, I have such a gut feeling about it and my gut feelings have so far been right, in good and bad ways.

If all avenues are explored and I then have to make the decision not to pursue it, It’s going to cause a big massive wailing emotional breakdown in me - becuase I do only have so much strength and I’m rapidly running out of it,I’ve had so much to deal with over the past few years, my Mum dying of cancer, finding out my errant father sexually abused my sister over years and resulting police involvement, a horrible work sitation with a new boss where I left my job, my partners redunancy, my partners fathers death, my partners depression, trying for 4 years to concieve, finally conceiving but miscarrying at 8 weeks, a year of fertility treatment and 2 clomid attempts and resulting hyperstimulation, now cancer.
I only have so many mental resources to fight and they are very nearly spent.

**** Is there anyone who knows ANY WAY of retrieving eggs without using hormones or of ANYTHING That might help us that is pioneering? Even if you think it’s silly, please let us know because we can ask about it, research about it… ****

Thanks xxxx

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Really sorry to read about all your bad times. I have no experience, but bumping thread up for you. All I can offer you is a big HUG. Adi x

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I am in a similar situation & I feel exactly the same about this. It would be so amazing to be able to have kids once this is over & at the same time I don’t want to risk having a reoccurrence as a result. I don’t think I could go through all this again. Already finding it v hard psychologically not to mention the guilt I’d feel if I leave my hubby & a kid behind ! :(( all very upsetting. So like you I have been told we could try after 2years of Tamoxifen, but I’d be very scared to jinks it & prefer to wait 5. However fertility specialist said not to wait too long & start as soon as my oncologist is happy for me to consider having babies. He said that just because my periods come back would’t mean they would stay. I could stil get an early menapouse as a result of chemo & he advised me not to wait years before taking that step. I am terrified of getting a reoccurrence, especially reading about so many ladies here getting them 6 months or years after having their primaries…

I heard of something called ovarian cryopreservation- they remove some if your ovarian tissue surgically & harvest eggs- so no hormones! However, this is still very experimental with low success rates, not to mention you’ll be losing a chunk of your ovaries as a result !! Also my BCN said so many people conceive naturally & that I could try that mayb 2 yrs after tamoxifen & if that fails then seek out other fertility options. I am hoping she’s right and also hoping that other options would surface themselves as the science and medical world progress in the next few years!!:slight_smile:

I’ll definately let you know if I learn / find out anything useful in the future.

I’ll be very interested to find out if any ladies out there could share their wisdom on this issue or give us hope…

xxx

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Hi, I too share in your worries about fertility. When I was told at the age of 30 I had BC, the risk to my fertility having not yet started a family was more upsetting to me than having being told I had cancer. I stopped taking my pill last year and though I would see what happened and then this happened, I keep thinking I could have been pregnant by now or at least looking forward to being pregnant. Also feeling angry with myself for not trying sooner because as I thought ‘I’ve got plenty of time’ and now I feel time could run out.

I decided not to go down the egg harvesting route because of the hormone issue and not wanting to delay my chemo. I instead opted for having Zoladex injection (I bloody hate having them) in the hope of preserving my ovaries, who knows it may work? I had to try something to give me at least some hope.

My BCN did briefly mention to me the possibility of taking Tamoxifen for 3 years then stopping to try getting pregnant. But I too worry that I am not giving myself then best chance by not taking it for 5 years, and I feel like I should be thinking of myself and my OH who obviously wants me to stick around. And what if I couldn’t get pregnant for a while and time goes on leaving longer and longer before restarting on Tamoxifen, if that is how it would work, I have no idea?

I to worry about re-occurrence risks when getting pregnant and whether to take that risk despite longing to have a baby some day.

It’s such a worry, so much so that it has overtaken my thoughts of having BC, I don’t really think about that much which I guess could be a good thing. I feel frustrated and insure of the future. My OH tries to comfort me and tells me things will work out for us but nothing makes me feel any better. It doesn’t help because I am such an impatient person anyway and I hate not being able to make plans not be able to take control of a situation.

I too would be interested in finding out more and reading any of your experiences good or bad and my heart goes out to any other ladies experiencing similar worries.

Emma xxx

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God all this fertity chat happens ehen i’m away after a year of hardly any discusdion on the forums!

Yes there is a very low hormone ivf cslled natural
ivf. There is sn expert in new york. Thd gynacologist at the young womens forum in manchester last week told ud he does it too. It works better on older ladies apparently. He is based at a liverpool hospital and was lovely. Theyhave a 72 hour referral target. Ask breast csncer care who he was. Greta, the younger ladies nurse for bcc was there. Try and get hold of her maybe? I dont have my notes on holiday with me obviously or i coild tell u his name. Good luck, please let us know how u get on

vickie
x

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OMG thank you sooo much for your contributions, I had *NO IDEA* these options are available!!! I think Cryopreservation is unlikely as I don’t think I can risk being pregnant/carrying a child.

HOWEVER I can look at egg retrieval and storage for a potential surrogacy option later once I have had the 5 year all clear.

I was told that there was no other option other than to use Follicle Stimulating hormones - I do ovulate but have PCOS so it’s sporadic.
There is an option to go and have a natural or low dosage FSH egg retrieval.

Tors - I can’t thank you enough for bringing this to my attention, I’m going to get on the phone tomorrow to my local assisted conception unit and insist on a fast appointment with the specialist there to discuss and potential have a referrel. It normally takes 3 months to get an appointment with him on the NHS, but I feel that seeing as they didn’t offer me to discuss at diagnosis of BC that they have a duty of care now.

Fantastic - I’ll let you know how I get on with this.

Much Love xxxxx

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createhealth.org/Natural%20Cycle%20IVF.htm

Anyone interested in Natural Non-Hormonal or Low-Hormone Egg Retrieval/IVF for women with Breast Cancer please look at the above link and do speak with your local assisted fertility clinic (I wasn’t ever told about this option when I had OHSS - Ovarian Hyper Stimulation Syndrome) on Clomid Follicle Stimulating Hormone.

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Some encouraging news - I’ve called our local assisted fertility unit and managed to get an appointment to discuss what is avaiable to us with the Specialist - this is on the 7th June, I can’t believe I managed to wing an early appointment, when we’ve seen him twice before it’s been 2/3 month waiting time!!!

I’ll let everyone know how this goes, for the women out there that are affected by fertility issues, it’s very important that we’re aware of ALL options, especially in the case of hormone receptive cancers.

Don’t give up - fight to have as much knowledge as possible and to make an informed decision - and speak to specialists. Oncologists primary aim is your treatment and stopping reoccurrence - my oncologist mustn’t have known that natural cycle IVF exists or she would have mentioned it as an option. She gave the impression that there wasn’t much chance without it being very dangerous to me.

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Thanks for bringing up natural IVF option Tors, I also wish I had known about this earlier. Even though I had a consultation with a fertility specialist this option was not mentioned to me. However he told me to see him when my onc gives me go ahead. He said something like he would assess the damage done & check my egg reserves so that he can then give me more appropriate help / advise. I’m planning on going to the younger women’s forum in London, so hopefully they would also have similar information that we could benefit from & understand our options more clearly.

El Katrano- I am really pleased to hear about your appointment in June. I wish you all the best. And thank you for the link, it has definately given me hope. Keep us posted on what they say. I am still having chemo (3fec+3tax) & nearly half way. So I am not sure when to ask for another appointment with the fertility specialist. Maybe after all the treatments are over. Bdw I share the same worries about being pregnant too. I read somewhere that it increases the risks of BC especially during the period ~ 1 yr after the birth. I’d need to do more reading to be sure though. I really really want to be able to carry my own baby , however if that’s going to increase risks then I’d consider surrogacy. I admire your determination & positive look. I am sorry to read about all the bad things that had happened in the past. I am sending you a big hug and all my positive thoughts and wishes…

Xxx

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Am on the beach and getting told off gor reading bcc! Just wanted to say there is a blood test thats simple and checks ovarian reserve levels, but can only assess quantity left not quality. We got handouts so ask greta the nurse to copy and send some. Glad is of some use.

Bcc mods- please can you ensure that the manchester fertity team speakers details are available asap as time is imperative, plus i broached with thegynacologist whether he’d do a livecchat session on fertility. I put him onthe spot andhe agreed, but i do think he’d be up for it. I am sure it would be well sipported on here if it was publivised on the forumin advance. Please could someone investigate? Thanks

right, back to my sangria. Better than the awful red fec cocktail i was having this time last year!

Vickie
x

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Thank you all for your comments.

I am feeling *outraged* that the non-hormonal/low-hormonal option is not COMMON KNOWLEDGE within the cancer communities for women with these issues, absolutely outraged.

I appreciate that not everyone wants to go down this route but surely that is OUR decision? It’s also cheaper than conventional IVF by about 25% from what I’ve seen so far. They can only get out whats there though and noone knows the quality of the eggs.

I feel very strongly that all fertility clinics need to be better prepped to deal with younger people with cancer and their fertility options - it is OUR decision how to proceed once we are fully conversant with all the stats, the options, the costs and the risks.

Tors - thank you for that and I think a check to see about egg reserves should be done also, this was never mentioned to me either. I’m starting to think cynically, because its perhaps something they don’t do in that particular clinic so of no financial benefit to them.

THe specialist I’m seeing is fortunately one of the countrys leading in this field, he happens to do NHS work under my local Primary Care Trust - so I’ll be appealing to him about when they next have their big yearly session with other UK Specialists, that this is brought up and people are made aware of these options.

YOu enjoy your well deserved sangria and your beach Vickie and have a few for us!!! I’m loving you right now :slight_smile: xxxx

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NAS - Make the appointment now, time is of the essence. I have done 2 EC, I’m going onto Taxotere for my 3rd Chemo round on the 1st June, I’m having 6 treatments in all, Chemo over by August if all goes to plan, 1 month of rads afterwards.

I know how long things can take with IVF cycles or Assisted Conception, *especially* if you’re getting any of it free, they prioritise people paying but it’s soooooo expensive, in the thousands. I for one do not have this money at all.

Write all this info down and get on to them, call them up, find out the situation, push on the time is of the essence part of it, tell them you weren’t advised of the options or you would have started this process a lot sooner if you’d have been aware etc. I think you’ll find that if you state all this you’ll get a fast appointment.
You need to know and don’t leave it.

Best of Luck to you.

BTW - I wouldn’t say I have a positive outlook on it as such, just that I refuse to take No as an option if I can find out myself, I dont always trust that 1 persons opinion is fact. Until I’ve exhausted all options to MY satisfaction I’m not letting go of the hope that I’ll be able to do something about all of this.
And I also think, If I’m prepared to fight, if I’m prepared to research and find things out for myself, then I prove to myself that I’d have made a bloody good Mum :wink:

x

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I don’t know if its different in Scotland, but when i was diagnosed, we got an appointment at the fertility clinic the day after I was told I’d need chemo and we started IVF very soon after that (free on NHS). Neither of us have any kids and the situation would have been different if either of us did (i.e. it wouldn’t have been free necessarily). So my chemo wasn’t delayed by too long. The BCNs had good links with the fertility clinic though it was at a different hospital.
Al x

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Hi Bob - It’s different in every Primary Care Trust and truly is an example of the postcode lottery. It depends on their priorities.
To get an appointment on the NHS is our trust takes 2/3 months to be seen, basically speaking, before BC was diagnosed, we’d been in the assisted fertility unit for a year and had only got as far as 2 Clomid attempts without IVF, just to see if I could get pregnant naturally if my ovaries were stimulated. Problem is I developed Ovarian Hyperstimulation and was very ill from it on both occasions.

My OH has a daughter from his previous relationship, she is 11. Because of this, we were unable to have a free IVF Attempt in our trust. Despite our 10 year relationship and despite the fact that the problem was not my partners sperm but MY cystic ovaries, so if I’d have gone in there with a partner who had no children, I’d have had 1 attempt for free. Seems unfair when the problem is with me and I have no children, so wouldn’t matter who my OH was!

It also depends on your age. I was told before that egg retrieval for IVF purposes would not be covered despite having cancer, due to my age (34), if under 30 I would have had this done for free with cancer diagnosis. I’m going to find out more on that at my appointment, I only heard this via my BCN when I asked nearer to diagnosis of BC.

x

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Hi. It is rubbish that it varies so widely depending on where you live. I was 35 when I got the IVF and they didn’t mention an age cut-off.

I went to a younger womens forum recently and there was a session on fertility (with Greta, the nurse Vickie mentioned earlier on this thread). There were people from all over the country at it, and everyone had had a totally different experience regarding fertility i.e. some BCNs mentioned it, others didn’t and they didn’t realise it was an option until after chemo.

Good luck with whatever you decide to do. It seems a very unfair situation for you to be in. BC sucks.

Al x

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Its actually the same for a lot of treatments, never mind “elective” procedures like IVF/Fertility that are none-life threatening.

From my times trawling the internet in the past about fertility options, I’d already seen it’s different for a lot of people.
It always feels REALLY unfair when it’s happening to you!

We can’t necessarily change how IVF or Retreival is doled out HOWEVER we could all change the level of practice of providing FULL and accurate information to people in this situation of infertility whether cancer is involved or not. I would have said that they have a duty of care to be impartial and to provide full information to people.

I’d never hard of cryopreservation of follicle tissue before OR of natural or low dose egg retreival, and I did some quite extensive research.

The level of information given to us younger cancer patients about our futures and our ability to have families could be nationalised so that they have information available for us patirents to be fully informed of all available options to enable us to make decisions and choices for our futures, *quickly*.

Having a cancer diagnosis is stress enough without having to battle about our unsure futures. Having leaflets available would not harm.

x

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Hi - I saw this after my post.

I agree with you on the pregnancy side of things, because of reoccurence, I suppose it depends on the age of the person concerned as well, at 34 and with existing fertility issues before BC, I don’t have “time” on my side.

BUT non hormonal egg retrieval and cycle tracking naturally seems to be not at all risky and could lead to stored eggs/embryos for potential surrogacy in future for couples. It’s also cheaper than conventional drug and hormone related IVF although you can’t get loads of eggs out and grade them.

So I do think that people should look at all options and weigh up the pros and cons, I also don’t think that specialists can’t be challenged. Noone had told me about this option at all - they dont do it in my PCT but I should have been told about it to investigate for myself.

Also, people with cancer aren’t the only people who could benefit from natural cycle tracking and non hormonal retrieval, there are people who hyper stimulate on hormones and it’s too dangerous to allow them to continue with it, like me before BC, I should have been advised of this method. I will be asking some difficult questions.

I was also told that the hyper stimulation on Clomid did not in their opinion cause the BC or exacerbate it - if this is the case then why are they saying its too dangerous to do it again? Interesting to hear the answer to that. I’m not angry at them for my BC or think it caused it, if it’d been in the list of negatives I’d still have done it because I’d have thought the benefits outweighed the risks of something like that happening to me at 34…

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By the way, sorry for just focusing on the clinical in my reply then, old habits die hard, I tend to be analytical and forget other stuff!

Sorry to hear about your friends, its truly awful it really is. I do think that the medical community needs to address the fertility concerns in a more focussed way and that ALL facts and procedures and their positives/negatives and statistics need to be available to everyone in an impartial way.

Perhaps if your friends had been given all this info upfront and not just one persons opinion, then they may have made other choices, I don’t know.

So sad, I remember reading a post which stuck with me, about a lady who had a terminal end of life diagnosis and a little daughter - she had a cast made of her hand so when she was gone, her daughter could still hold her hand, I cried bucketloads when I read about this… that poor woman and that poor little girl, it’s so so so sad.

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Thank you for sharing your experiences Msmolly. I am sorry to hear about your BC diagnosis in 2007. I truly wish that this disease would leave you & never come back again & that you’d have long years with your son. I will be doing lots of research this summer & reading articles, etc & doing lots of thinking on this issue. But at the moment from what I read/heard/know, I’m more inclined to consider natural IVF & surrogacy.

Vickie- I’ll be having my red FEC coctail next week. But I would rather have one of your lovely cocktails so enjoy yours & have one for me too:) I’m sure many ladies would be interested in that live chat idea especially if given enough notice. So thank you for pointing this out. I know there is already a booklet on fertility & BC. But I think a more updated version containing all the available options including natural IVF & including opinions & experiences of younger women would be very helpful. & much needed I think.

El Katrano- I am having my 3rd FEC on Wednesday next week & then I’ll start tax. So I think we’ll be finishing chemo around the same time. I am yet to have surgery & radiotherapy afterwards. So that should finish by December. I’ll wait until I have spoken to fertility speakers at the younger women’s forum first before I book my appointment with the gynaecologist. I want to ensure I am prepared & have a list of questions for him ready next time I see him. Also my sister is coming to visit me in June. I want to spend some quality time with her while she is here. I am the youngest in the family & she is 7 years older than me. So I think the whole family is still puzzled & shocked by my BC diagnosis as I don’t have any family history including extended family ! I am more excepting it, but have my ups & downs but thanks to this forum I have come along way now. I know that I provable cound’t have found out about all these info about fertility & BC without all of your lovely ladies contributions. Plus the psychological & emotional support. Thanks to all and BCC:)

Love to all

Nas

Xxx