Early diagnois and wanting a baby

Public Archive
1

HI
I have just been diagnosed. I don’t know all the terminology that is being used yet but I have 1 grade 1 lump and am due to have a biopsy for a 2nd area in my right breast next week. I have been having fertility treatment (drugs) since february/march time and was hoping to go for IVF soon.
i don’t know if it is an oestrogen based cancer yet even, but have been told that it is unlikely I would be able to try for a family for a number of years possibly up to 5.

I’m 43 and don’t have time to wait. I’m in shock from the diagnosis and the double whammy of maybe not being able to have a baby too.

Has anyone else been in this position who could give me some tips on what to ask the drs and work out what risk there might be if i put of treatment of radio/chemo/drugs after the lumpectomy or mastectomy?

Many thanks

2

Hi Snowie,

Welcome to the BCC Discussion Forums. While you’re waiting for replies to your post I just wanted to remind you that the BCC Helpline is there if you need information and support. It’s open Mon-Fri 9am-5pm and also Saturdays 9am-2pm Tel 0808 800 6000

With best wishes,
Anna, BCC Facilitator

3

Hi Snowie,

So sorry to hear your news - but glad you have found this forum for some support and so that you realise that you’re not alone.

Everyone’s case is slightly different and whether it is an oestrogen-based cancer is an important factor in your case (if it is ER+ then hormones to stimulate egg harvesting could feed the tumour and you would also be offered Tamoxifen for 5 years - although some people trying for children come off it after 2 years - which is what the delay of 5 years is about. If you’re not ER+ then it is much safer to stimulate your ovaries and you would not be offered Tamoxifen). The other important considerations is the size of the lump(s) and the treatment plan - if you only need radiotherapy then that doesn’t affect your fertility, whereas chemo can. Obviously you can be involved in the decision-making process.

I’m 33 and was just trying for children when I was diagnosed. My tumour is large and ER+ so I was advised against egg harvesting and had chemo straightaway. At the beginning I was devestated - I couldn’t imagine a life without children. As time has gone on I’ve come to terms with doing all I can to beat the cancer first and I’ll worry about the children thing if my treatment is as successful as they can tell. I will have surgery following chemo, then rads, then 5 years of Tamoxifen.

There are other ladies on here who were also going through IVF before being diagnosed and I am sure they will be on here to share their stories soon.

Once you meet up with the oncologist and fertility experts you’ll start feeling more in control. They’ll be able to go through all of the options that are specific to your cancer type/size etc. Be very honest with your feelings as these also need to be taken into account.

Good luck - and let us know how it goes.

x

4

Hi Snowie

Pretty much what Sandytoes said really.
And the thing is that everyones diagnosis is different and will effect the outcome regarding childbearing etc.

We started trying for a baby when I was 30, had a miscarriage at 33 which was devastating, then went in for fertility treatment at our local assisted conception unit. Had a year of investigations and Clomid and got the stage of IVF when I got the BC diagnosis.
My Onc said that it would be suicide for me to ever carry a baby because having 9 months of elevated Oestrogen levels could trigger a recurrence. Please bear in mind this may not be the same for you, it depends on grade of cancer, on size of tumour, age etc.

However, I felt it necessary to see the Fertility Specialist as I said to my Onc, with the greatest of respect you are an expert in your field of Cancer but not on Fertility, she agreed.

When I called the clinic and said that I needed to see the specialist urgently as I had BC and started treatment soon and must know prior what my options are, they got me in the following week (usually takes about 2/3 months to get in with him, on the NHS)

He told me that, in my case, unfortunately the only thing I could do I wasn’t going to risk my health, would be to wait the 5 years til after Tamoxifen and then they’ll investigate with a camera in my womb to see what state everything is in, it would still be exceedingly risky for me to carry a child even after the 5 yrs. If I try and do before hand he said it would be suicidal.
He said that he didn’t want to give me any false hope.
I have poly cystic ovaries so already have a problem, then chemo will probably destroy what eggs I do have, I’ll be 40 by the time I’m off Tamoxifen so age is a factor too.

I would really suggest you see the fertility specialist ASAP so you know where you stand once you get your full prognosis. Don’t just take what your ONC says because their primary concern is keeping cancer at bay and your health.

It’s truly awful to face all of this and think about how it’ll potentially stop your chances of conceiving too and a future family. Out of all of this, this is the worst thing for me. I only wanted 1 baby, didn’t seem a lot to ask. I’m incredibly sad about it. Incredibly. So my heart goes out to you.

You know you MAY be OK Grade 1 isn’t too aggressive (mines grade 3)
Some people dont’ have to have chemo and that’s the worst for eggs.

Good luck with it all and let us know how you get on, xxxx

5

PS. Ask about egg retrival, there are natural cycle IVF methods of retreiving eggs if you’re unable to take any of the egg stimulants because they involve elevating your hormaones if you do turn out to be ER+. They can track your natural cycle and get an egg, thats if you do ovulate and produce an egg every month.
I coudln’t do this due to my Poly Cystic Ovaries, I didn’t produce eggs every cycle.

They may do this for free for you or they may say you have to pay, it depends on your PCT and their rules, for me I couldn’t have had this free as they dont do that if you’re over 30.

6

Hi, sorry you find yourself in this position. Sorry for butting into the thread. I am older, 47, and thankfully had had my children before being dx with bc and know how awful i would have felt in your position.

As has been said, everyone is different in the size and stage of their bc and what it responds to but I just wanted to tell you what I was told as someone who was grade 1, stage 1 so possibly a similar size of bc to yourself. I had an SNB and WLE (lumpectomy) within a few weeks of dx. Thankfully no spread to lymph so only radiotherapy not chemo. In fact I was told that if I had opted to have a mastectomy instead of tissue conserving surgery, I wouldn’t have needed radiotherapy either. It was, however, hormone positive (highest on scale for both oestrogen and progesterone), so tamoxifen still prescribed for 5 years.

The bit that may be of interest to you is that, whilst the oncologist strongly believes I should take tamoxifen (and I’m happy to do so as I am later in life than you), the surgeon said that I was “borderline” for needing it because my bc was early stage. He said take it for a year and see how I went and they could review it if I was having terrible side effects or something. If you are early stage, you may perhaps not need to take tamoxifen for a full five years given your circumstances?

Hoping it all works out for you xx

7

BTW you may not get loads of replies because theres not many of us on the forum who are young and not already started a family xxx

8

Hi Kat - I always think of you when the baby thing comes up in these threads.

There are a few people on the forum in the same situation - and some who did go on to have children after treatment. There have also been a couple of threads from ladies asking other ladies’ advice on coming off Tamoxifen early as some women decide to try for children after 2 years on Tamoxifen. Maybe once you know your ER status we can try and find some of those threads FYI. Hopefully none of this will be an issue!!

I also went on a BCC Younger Women’s Forum for women under 45 - I would highly recommend it. There was a really good seminar on infertility and I met quite a few ladies in a similar situation. I have kept in touch with a couple of them. One has managed to have one egg frozen that was harvested naturally. Not many of them use the forums though.

x

9

Thanks for all the useful info. I have been paying for fertility treatment anyway so don’t mind that and have been seeing a reflexologist who specialises in fertility and an accupuncturist. I believe strongly that they could help me too.
I do need to know all the facts but have another week to go! Why do they take so long!!
I will look at the under 45 group you mentioned too.
Snowie

10

Hi Sandy Toes

Its another one of those “everyone is different” scenarios with fertility and cancer issues too.

It was always going to be unlikely with me anyway, due to vast amounts of cysts on my ovaries, in particular on 1 ovary was covered. So the chances of ME having a child even if I came off Tamoxifen early are very slim.
They would have to use ovary stimulating drugs on me, which I hyper stimulated on the 2 times, swelled right up like a balloon and was extremely ill and sore as a result, really really nasty. One of the eggs swelled to 18mm!! My abdomen was enourmous.
So they can’t use them on me because of the cancer and ER and PR positive.
But that’s a pre existing condition in conjunction with BC.
Kind of resigned to it now, though still feel very weepy internally whenever I see people playing happy families.

11

Yup. I empathise with that. All of my friends are popping babies out left right and centre. Gutwrenching.

12

It was hard enough when going through fertility treatments but there was hope and yes I’d had a miscarraige before we went near any treatments, but that meant I could GET pregnant, even if it took 4 years for it to happen. So there was HOPE. Now there really isn’t.

I went to my OH’s Mums 60th on Saturday night and his cousin was there with her baby who is absolutely cute as a button and I was cuddling him and playing etc and then I felt all these eyes on me, I looked over and like half his family was looking at me with the “sympathy eyes” as I call it, I felt like shouting “FFS don’t” at them, because I just want to be normal.

I also worry a lot that because people know how much we wanted our baby that when I go and play/hug/cuddle and get enjoyment from their offspring that they think I’m some sort of baby snatcher or something - probably paranoia.

What gets me though is the sympathy faces or the looks etched on people when they see how much I’m enjoying being around kids. I don’t think people realise they are doing it.
Or perhaps I’m looking a bit heartbroken without realising it, I know what I feel inside and put a brave face on it but perhaps that shows.

13

Oh and also, would people stop asking me “have you thought about adopting?”

Yes I have, but really, I want OUR baby not A baby.
Jeeeeez, give me chance to get over that first.
I wanted a piece of me left on this world when I’m gone.
I wanted to see a combination of OUR genes, a little bit of my OH who I adore in the eyes of our baby.
I had visions of a little miniture boy who is the spit of my OH running around helping Daddy in his workshop, silly I know.

Adopting? That easy is it. I actually know someone who went through that for a year, it was torture for them both and in the end I think it split them up. Social workers snooping everywhere, family, friends, bosses at work interviewed. Your house getting pried around. Constant questions. I think after the last few years we’ve had the LAST thing we’d need is that kind of intrusion and heartache.

14

Not silly. I want/wanted that too.

Also, I think it can be quite difficult to adopt after a cancer diagnosis.

15

I thought there’d be NO WAY that they’d let anyone who’d had cancer adopt a baby.
My friends who tried the adoption route got knocked back by the panel due to their weight issues (both “obese”) and told they had to get in a normal weight range.
So I thought it very unlikely they’d let someone who’d just had cancer adopt, their primary goal is making sure that child they place has the best of chances and don’t want an adoptive parent keeling over on them too. Baring in mind the child is likely to have had some traumas of their own to contend with, totally fair enough. It should be about the child.

But my BCN and ONC both dealt with a lady who they said was very similar to myself, both in diagnosis and personality apparently.
And she adopted. My ONC went to the panel and explained about her long term health and statistics etc. Though I’d have to wait 5 years to adopt probably in case of recurrence.

This lady adopted a little boy.

So it’s not impossible. My ONC actually said to me on the last time I saw her that she was so sad for us that we couldn’t have a baby, that we’d be fantastic parents and I’d be a great mum and what a crying shame it was and if we ever did want to adopt she’d happily write reports and attend any panels etc (She doesn’t have to do this BTW, this is out of sheer goodness)

So it’s not a No-No for everyone and I really thought it would be.

16

Hi Snowie,

So sorry you have had to join our horrible club but at least you can discuss anything you like with us as we are all in the same boat.

I am also same age as yourself 43 and earlier this year went to the doctor to discuss having a baby at my age and the possible implications this could have, then during a routine examination and after having an annoying itch on my RH Breast for a week the dr examined me and after a check up at the hospital and a biopsy they found cancer in my breast 6mm lump two week later they found it had spread via the lymph nodes to my lungs, I have been on chemo ever since that was 6 months ago just finished it taxotere and herceptin (still on herceptin) next is MX with LN removal then see how things are then, oh and 5 years of tamoxifen with herceptin. The chemo did work and has vastly reduced all tumours including the primary one which the nurses could not find to measure in my last examination, all this is excellent news, however I too am absolutely gutted and shell shocked that I wont be able to have a baby, I always thought I would have at least one baby and now it looks like I wont be able to ever have any children due to the tamoxifen and the chemo. My grandmother was 42 when she had my mum and my grandmother on my dads side had my dad at 39 so having children later in life was something I did not think would be a problem.

I cant afford to take a 9 month break from the drugs or the secondaries in my lungs could play up, so really having a child now is out of the question, Snowie I feel your pain and understand how you feel, hopefully because you have caught your cancer early you might be able to have a baby, we are all very very different. Anytime you want a chat please feel free to PM me.
Sending you lots of love and light
Sarahlousie xxxx