Pregnancy and ET

[vicster]

At my diagnosis of ET in September '20 I was told that it would be complicated if I were to get pregnant. At 36, that’s not what I wanted to hear, and of course nothing makes me want a child more than the possibility of not being able to have one! The consultant made it seem like it could be as simple as just additional monitoring, but as bad as life risking. I was referred to obstetrics for an appointment that my partner and I can both attend, with both an obstetrician, and a haematologist. Of course I’ve heard nothing and am on a list somewhere, who knows when we’ll get that appointment once restrictions lift. It was confirmed at my consultant appointment in January that I am on someone’s list for that conversation, perhaps I should be patient, but I turn 37 in a few weeks and it’s on my mind that I don’t have the luxury of being patient.

My questions to others are:

• have you been in the same situation and how did you cope?
• what are the risk factors, and is the risk to the baby, to me, or both?
• where can I find more information, are there private specialists I can talk to, and if so should I be looking for an obstetrician?

Thanks all!

[Erica]

Oh, @vicster, firstly, you were diagnosed in Covid times which must have made it twice as much of a shock and complicated. Then you are hit with the bombshell about pregnancy prospects.
Personally, and I am not medically trained, it would be ideal if you could meet with your haematologist and obstetrician. Perhaps it might be worth checking with your haematology team to chase up with your way forward. Obviously every thing has slowed down during Covid times and I believe there is quite a backlog over the last year and I expect co-ordinating two consultants make even more difficult.
Perhaps seeing an obstetrician privately is an option to you both, but they might need the haematologists knowledge of your medical situation, expertise and input.
I realise you feel your clock is ticking and I cannot imagine what it is like for you and the not knowing must be so, so hard for you and your partner.
Can you and your partner talk about how it is for both of you?
Are you on treatment or likely to be so?
I hope someone might be able to help you more although everyone’s experiences, conceiving prospects, pregnancy and medical issues can be individual and if you would like to speak to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
Please do let us know how you get on and take care and I am so glad that you have had the courage to post.

[Nichola75]

Hi @vicster. I’m sorry I can’t share any experiences around pregnancy etc but @Erica has given some good advice. What I do know is how difficult and frustrating it can be chasing two teams - both of equal importance, and with the added stress of COVID. What I have learnt is that sometimes things have to be chased up and I have had to be a nuisance. I’ve got past worrying about this, and although it’s a pain, I think it might be worth giving it a go to try and find out where you are on that list, then at least you know and can make decisions about private consultations. The support line will be able to offer advice as well. Please let us know how you get on. How are you doing - health wise - at the moment?

[vicster]

Hi @Erica, Hi @Nichola75,
Thanks for your speedy responses! I can totally be a nuisance I already am being a nuisance trying to get on the CEV list (still, whole other issue that I won’t get into on this thread!) and I feel like that’s where my efforts should continue to go at the moment, but it can’t hurt to try and chase the obstetrician at my hospital. The haematologist at my appointment in Jan could see on the system that I’m on the list for a particular doc, and said that I just have to wait, but I could at least try to find out if the backlog is being worked through or if it’s all on hold.

I’m not on treatment yet, nor am I likely to be until I’m passed childbearing age apparently, presumably on the proviso that the numbers don’t skyrocket. Back in Sept my platelets were just under 500, and in Jan they didn’t even want a blood test done. I don’t understand nearly enough about this disease yet to know whether there’s a “if you’re under 800 you can have a baby” type rule, or if it’s a blanket “we advise against it but it’s your own risk” kinda thing. I’m very risk averse, and when my partner and I have chatted I’ve made it pretty clear that if the risk of him being a single Dad is any higher than standard pregnancy (I know there’s no such thing, but you know what I mean!) I won’t do it.

Actions for this week: chase haematology for CEV list AND obstetrician appointment!

Thank you!

PS - being diagnosed in covid times meant the consultant apologised profusely that my partner wasn’t with me, that usually they would ring and ask us both to come, but I’m actually really glad they couldn’t, because the wait between that call and the appointment would have been awful, I would have spiralled and catastrophised and probably not gone to the appointment out of fear of what was going to be said. They don’t ask a partner to come in for good news!

[Nichola75]

I think that’s a good ‘to do’ list this week. Like you, I’m good at being a nuisance. However, it comes in handy in these situations! There are lots of threads about getting on the CEV list and the support line will be really useful in talking you through how they can help. Maybe worth a call? Have your team provided you with lots of information? Four year on I’m still learning new things about my lymphoma. I think it’s sunk in and then I have to read to process the information again! Just hit 46 though so can I blame it on my age? Please let us know how you get on this week X

[vicster]

I spoke to the support line earlier this week, it was such a useful conversation, they were so helpful
The team gave me a Bloodwise booklet, and told me to use your website. Maybe it’s my age, but I think he mentioned four different times NOT to google it
I will let you know if I get anywhere this week!

[Erica]

Hi @vicster another action is to write down all the questions you have, your fears, thoughts and practicalities etc. so that you cover everything you want to say and know.
As @Nichola75 we have learnt a lot over the years and I have also learnt to be big and brave and ask that follow up question and ask for clarity until I really understand something.
You say you are not on any treatment and that is quite common and is usually called ‘watch and wait’ or ‘active monitoring’ the tests might be daily to annually. The results of of all these tests plus your symptoms and wellbeing are all taken into account before treatment options are considered.
I am not of child bearing age now and I have been lucky enough to have also been on watch and wait for 17 years with another blood cancer.
By the way it was good advice to avoid Googling !!!
Try (and it is easy for me to say) to look after yourselves and spoil yourselves, the waiting is always the worst.
Let please do let us know how you get on.

[Franko]

You sound so organised and together @vicster I’m full of admiration for your positive attitude and hope that you find the answers that you’re looking for. I’m afraid that as a mere man I can’t give you any advice on pregnancy as I was born as one of the inferior gender

[Dbird76]

Hi Vicster,

I’m sure every woman of childbearing age has felt the exact way you are right after diagnosis, I know I did!
Like you I spoke with an obstetrician and haematologist about the risks and what would be involved if I got pregnant.
As we are high risk, we are advised to birth in a consultant led maternity unit, so that they can spring into action if required, and they monitor you very well throughout labour. When you become pregnant you have an appointment quite soon after and then you see the midwife quite frequently too. I was at the doctors one week and the hospital the next, so they monitor you very well.
You are advised to take heparin injections instead of the aspirin daily, as taking aspirin when pregnant can affect the baby (they would explain all of this in the initial appointment).
Except for the countless appointments, my pregnancy was a good one, without any issues, which is good as I also have an autoimmune disorder to factor in too.

Try not to stress about it, just have fun trying for a baby for now, and contact your consultant if you get a positive test in due course. Hope you hear about your appointment soon, so that you know where you stand.

Dawn x

[Erica]

Thank you so much @Dbird76 your pregnancy experiences were so useful.
I wonder what the whole experience felt like for you without the support of this forum.
Although you say how brilliant your medical team was did you have any other support?
How was it emotionally for you at that time?