Fertility questions

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1

Hi everyone,

I was diagnosed last week, 2 months after my wedding and I’m only 30.

I am still undergoing further tests to see exactly what we’re dealing with, but I know that the lump wasn’t palpable 6 weeks ago (I’m religious about checking since a friend was diagnosed 6 months ago aged 29). I’ll definitely need a lumpectomy and chemo (my lump has grade 3 changes), and I’ve been booked in with a fertility specialist tomorrow before my MRI, CT and Bone scan next week. I’m really worried that they know more than they are telling me - is it normal to have all of these checks?! The bone scan is really scaring me, I can’t even think about the implications of those results.

As we’ve only just got married, we were planning on starting a family really soon. We’ve been together 11 years and were looking forward to having several kiddies. I feel so guilty that our plans have come such an abrupt halt because of this. It’s just ridiculous that anyone let alone a fit, healthy young woman can get this. Why now?!

Anyway, setting aside the guilt and self pity…

Can anyone advise on some good questions to put to our fertility specialist tomorrow? Or have any of you been through this yourselves? We don’t know our treatment plan yet, or the type of cancer it is. Does this affect my chances of future conception?
I just don’t know where to start and my lovely new hubby is like a deer in the headlights!

Any help or pointers would be really appreciated.

Many thanks!

Tiggy

2

Hi tiggy

sorry you are having to deal with this. I’m 36 and have two little boys but we were trying for another baby at dx. I decided not to go down the ivf route Pre Chemo as I just wanted to get on with the treatment and was so grateful to have my boys. I did a thread at the time which I will try and bump
up for you as lots of useful comments from ladies on it. My cancer was grade three too but I’d have demNded Chemo whatever! I too was young fit and (I thought) healthy, it’s so surreal isn’t it? I was dx in march and still can’t understand it. I had ductal cancer, grade 3, weakly oestrogen positive, 17mm, no nodes involved. I had lumpectomy, 3 lots of fec Chemo, 3 lots of taxotrte Chemo, 19 radiotherapy sessions and am now 3 months into my 5 years of tamoxifen. It was hard but with support it was ok. And it’s already feeling like a bad dream.

Good luck
vickie

3

hiya hopefully you will have some answers now but i was 32 at diagnosis. I was offered ivf to harvest some eggs to be frozen for the future but it caused a 6-8 wk delay and i was so scared i went ahead without it. I am different as i have 2 girls.

My periods have never stopped. not even been delayed throughout everything- surgery, chemo, rads and now 1 yr into tamoxifen.

This i am sure means i am still fertile regardless of treatment so there is a chance you will be too.

I was told i needed to wait 5 yrs before trying and so would you i guess but you would still be young.

Good luck. Its a long journey but now it feels like a very bad dream to me.

S
X

4

Hopefully you have seen the fertility specialist and had your questions answered by now.

I was diagnosed on 09/09/10, at age 34 and confirmed with a grade 3 triple negative tumour on 05/10/10 after WLE. Due to the grade and my age I was told that I would definitely have to have chemo. I had my reconstruction on 15/10/10.

When I was told I would have to have chemo I raised the question of fertility, as my mum went through early menopause. I first saw the fertility specialist on 22/10/10, due to the chemo starting 6-8 weeks after the recon, there was a limited time, but they really pulled out the stops for me. I had my first scan at the fertility clinic on 27/10/10, and it was then just a matter of waiting for my cycle to start. I had my eggs harvested on 17/11/10, and they managed to harvest and freeze 7 eggs.

As far as I can gather, they prefer to freeze embryos to eggs, due to the success rates. There are also some issues if you are ER+ as the fertility treatment can affect the tumour in those cases.

I started my chemo last week on 09/12/10.

Fingers crossed for you, and wishing you all the best.

J

5

Hi everyone,

Thank you for your comments.
I’ve had the results from my scans. All were normal except the MRI which showed a tiny shadow on my other breast, had it biopsied yesterday so we’ll see what that shows. My surgery is scheduled for Christmas Eve (still trying to decide between wide local excision “v” mastectomy - any advice welcome). They won’t reconstruct until 2 years after my treatment finishes though.

We saw the fertility specialist who would be happy to fast-track an IVF cycle between the surgery and chemo. Looking at my cycle it may only delay things by 2 weeks, so fingers crossed for that. My tumour is mildly oestrogen +ve (progesterone and herceptin -ve), does this bode badly for IVF??

I’m desperately trying to read up on the implications of my decisions - will going through IVF mean the tissue that’s left after the surgery turn into tumours? Will a lumpectomy with chemo and radiation be a worse prognosis than a mastectomy?

How do you make these decisions?! What’s more confusing is that my surgeon wants to take everything whilst my oncologist and radiographer seem to think lumpectomy would be fine!

Sorry if this is a little fragmented! I’m writing as I think - and head’s spinning…

Tiggy

6

Hi Tiggy,

I am so sorry to hear yet another young persons life has taken a turn into a direction you could have never predicted at this point in your life.

I was diagnosed in March 2009, at age 30. I did have a little girl, she is 3 years old, and was 19 months when I was diagnosed. I had recently had a misscarriage, and we were trying for another baby, so bad timing! If there is ever a good time to get breast cancer.

I don’t think I can advise you what to do, but I can tell you that I had a masectomy and reconstruction in one operation, they do it! It was very painful and long operation with a long recovery, but well worth it. It feels different than a real boob but psychologically you still have a boob, and I think that helps a lot. I was not given the option of a lumpectomy as there were two lumps and not enough breast left after they took what they needed to take. Think I would have had the masectomy though, because at least it has all gone and you don’t have to worry about it returning in that breast again. The recontructions are so good now, I still have my own nipple too.

I had 7 cycles of chemo, then went back for more surgery to remove the rest of my lymph nodes as 3 out of 11 had micro mets. I was so in shock when I was diagnosed, I just felt I was going to die, and supposed I grieved for my life and thought it was out the question that I have any more children, so I did not have any fertility treatment. My periods stopped about 3 quarters of the way through the chemo, then stayed away for 10 months, then returned. The Onc wants me to stay without periods for 2 years so I am on Zoladex. This sends your ovaries to sleep while you have chemo too and is said to protect them. Although I have no periods at the moment, I am sure they will return in the new year at some point when I stop the Zoladex. My Onc says that due to my age, he would be very surprised if my fertility did not return. He also says he would not recommend having a baby for 5 years, and I will be on tamoxifen for 5 years at least.

I don’t think I will have another baby as I feel the pregnancy triggered my BC, but I have not been told this is the case. My BC is moderate to high hormone positive, and feel the high hormone levels in pregnancy triggered my BC to grow. I could be wrong, but the most important thing for me is to be around to see my little girl grow up. You are in a different place to me in many ways, and if I was in your shoes I would probably have my eggs harvested, and would pursue having a baby after treatment, as it was something I always wanted to do was have a baby. The most difficult thing is is being patient, the treatment is long, if you have surgery, then chemo then poss rads. If you are like me, your periods may well return in 6-12 months after treatment and you can have a baby naturally. This would be better than putting yourself through IVF. I have come across lots of women who are still fertile after chemo in their 30s.

There is no bad choice, just what is right for you.

Best wishes Boo.

7

Hi Tiggy

So sorry to hear your news. It’s always so shocking to read of another diagnosis in someone so young, even though I was one myself. The staging scans seem to be pretty standard btw - I’ve had two lots now. Happy to hear yours were clear.

My situation was similar to yours: I was diagnosed age 32, was with my OH, no children at the time but desperate to start a family. I thought I’d been given a death sentence, then mourned the fact I’d never have children, as that’s what one doctor told me.

However, here I am 6 years on with two lovely girls, age 2.5 and 6 weeks. I have had a recurrence, but unlike your cancer, mine was strongly ER and PR+, so pregnancy was not recommended. We took the risk.

I decided against chemotherapy because the statistical benefits were so small. But as someone else mentioned, Zoladex can be given before chemotherapy to switch off the ovaries to help preserve their function. Has your onc mentioned this?

As for surgery, there seems to be evidence to say that lumpectomy with radiation is as effective as mastectomy. I had a lympectomy first time and was warned I may have to go back to get clear margins, although it wasn’t necessary. (The recurrence wasn’t in the breast, it was in the lymph nodes, in case you were wondering.)

I so clearly remember those awful dark days waiting for surgery, reading on the internet about breastcancer and crying in fear with my OH. Things did improve for me after surgery, once I knew the pathology and the way forward - so much of the horror is about not knowing. It’s a bloody rough hand to be dealt and I send you a huge hug of sympathy and understanding, and to your husband.

There’s every reason for you to believe you’ll have the family you want, it just might take a little longer for you to have it than you hoped.

Very best of luck. xxx Jane

8

Tiggy,

Glad to hear your scans were mostly normal.

When I saw my surgeon I was offered WLE with LICP reconstruction 1 month later or mastectomy with immediate reconstruction.

With regards to WLE versus mastectomy, my surgeon told me when going through the options that the WLE with rads had the same probability of recurrence as the mastectomy. She said that WLE without rads had about a 30% recurrence probability, and with rads a 3% probability. So no-brainer on the rads front. That didn’t include chemo as it wasn’t definite that I would have it at the time.

With regards to the IVF, I would ask both oncologist and your fertility specialist about the ER+ implications. I was on hormone injections for about 10 days.

Even if you decide not to go for the IVF, it doesn’t rule out pregnancy later, as there is still the option of donor eggs, I know it is not quite the same, but it is an option. Also a number of women do have their periods return after chemo. My concern was that my mum went through menopause at 36 and I am 34, so didn’t see my chances as that good.

With regards to Zoladex, my fertility specialist was uncertain about recommending it, as it is still only at the trail phase and as far as I can tell the results haven’t yet come out, see link below for trial details.

cancerhelp.org.uk/trials/a-trial-looking-at-ovarian-protection-for-premenopausal-women-having-chemotherapy-for-breast-cancer

At the end of the day only you can make the decisions, but ask as many questions as you need to, I have found that everyone is more than willing to provide you with as much information and support as they can.

J

9

Hi Tiggy

I’m not in a position yet to offer you advice but from reading your initial message it seems as though we are in a similar position so maybe we could help each other along the way? (I think we may have even been diagnosed the same week!)

The more I look through this site the more I realise that there are so many of us affected - it makes such sad reading.

My situation is as follows:

I’m 33 and was diagnosed on 26th Nov with Breast Cancer. At this point we were actually 7weeks pregnant with our 2nd baby. Our first little baby is just 10months old, he was a fertility baby so we were keen to try and conceive naturally as soon as possible. We got caught so quickly and then our baby was snatched away so sadly by cancer on 6th Dec (I had no choice but to have a termination and then had my fist wle and all my lymph nodes removed during the same operation) My biopsy results showed that the cancer around the tumour was close to the margins so I returned to hospital on 23rd Dec for a second wle to remove more tissue. We will get the results early Jan and then we will be meeting the oncologist to discuss my chemotherapy treatment and will be raising the issue of fertility. We are so grateful for our little boy and everyday feel blessed to have him, the past year of my life as been so fantastic. We can’t let go of the dream of having another baby yet and have a long way to go to start to come to terms with our recent loss (we are receiving professional help)

My bioposy results from the first operation came back as oes mildly positive, prog positive but herceptin negative. I’m still not sure whether this is a good or bad thing in terms of future fertility?

I guess you have probably had surgery by now, if so I hope that it went well and you and your husband managed to have some kind 1st Christmas together. Our 1st Christmas with our son wasnt as we planned but we just had to make the best of a bad situation.

I’m sorry to have joined the chain so late but I’ve only just got connected to the internet! This site is my sanity at the minute :slight_smile:

Take care, keep us posted on your progress, Sharon xx

10

Hi Tiggy

sorry you’ve had to join the club, I was diagnosed the day after my 30th birthday in sept this year with BC er/pr+ and had mastectomy as 2 x 5cm+ lumps. Our wedding is booked for July next year and similar to you the plan was to start trying for a family soon after, already bought the big house too. I still don’t know which was more devastating being told you have BC or being told that babies may be more difficult…it was certainly a double blow.

Glad to hear you’ve got a fastrack ivf. Before I even had a chance to bring it up, my onc suggested going for ivf and talked about zoladex (although I chose not to) and has also chosen a chemo regime that is less likely to impact fertility (4xec and 4xtaxol…apparently the FEC has the bigger impact and Tax less). He has also said after 2-3 years of tamoxifen I could stop, try for baby and then go back on it to finish the course. Sounds like your drs are being supportive too! Onc also said there is no evidence to suggest that getting pregnant causes hormone positive cancers to grow, even though it sounds contradictory.

hope your operation went well and big hugs to get you through this journey!

Cat xx

Sharon - sorry to hear about your loss, hope the results are better than expected. Xx

tors - thanks for the link to your previous thread, we should have a permanent bump up as it is very useful.

Jane - thank you so much for your story, so glad it worked out for you on the baby front, has given me hope! Sorry to hear about the recurrence xx