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Any advice appreciated

13 REPLIES 13
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Re: Any advice appreciated

Thanks so much for your post Maire, it really is great to hear a good news story.

I had 5 out of 6 lymph nodes involved - something that has always troubled me! I never understood why so few were taken, however my surgeon says that he removed absolutely everything he could find. He explained that when having neo-adjuvant chemo, as I did, sometimes all the lymph nodes can become stuck together. I have translated that to mean that pretty much ALL of my lymph nodes were affected and just stuck together in a big, cancerous lump. That's not what he said, but that's how I have processed it in my head.

Thanks again so much for your post, it really is encouraging to hear of someone who was diagnosed at the same age as me doing so well, let alone going on to have more children.

K x
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Re: Any advice appreciated

....she also had zoladex.

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Re: Any advice appreciated

Jusy want to tell you of my sisters experience. She was diagnosed with breast cancer when she was 32. She had chemo and radiotherapy and took tamoxifen for 2 years. It should've been 5 but she wanted to have another child and discussed this with her surgeon. She had an aggressive tumour which had spread to her lymph nodes (2 or 4- she can't remember exactly). She had chemo (not Fec because her hair didn't fall out-this was a while ago). She went on to have a healthy child and is 14 years post treatment. Her cancer has not returned though she did have a mastectomy for dcis. I would be cautious if you have a lot of nodes involved but just wanted to share a positive story with you.

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Re: Any advice appreciated

Thanks very much JCJ, I really appreciate you taking the time to reply. We've had more of a calm discussion today and yes, surrogacy is one of the options available to us.

My husband did a lot of research yesterday about the risks of pregnancy, after a breast cancer diagnosis (specifically ER+) and it seems a lot of the recent research states that there is no increased risk. They advise leaving it for 2 years before trying, due to the high risk of recurrence in this time. I will discuss this research with my oncologist at my next appointment.

My husband agrees that staying on Tamoxifen for 5 years is probably the most sensible decision and then trying then. Like I said, at the moment I can't see that far in the future, nor do I know what my situation will be then. I guess all we can do is live in hope.

Thanks once again for taking the time to reply, I very much appreciate your advice x
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Community Champion

Re: Any advice appreciated

KAM80. What a horrible dilemma!  Of course you are focussing on the now and getting better yourself. You are not in the least 'abnormal' for not wanting to contemplate the future, never mind the huge commitment of starting a family.

 

If your eggs have been frozen, is there a possibility of using them and your husband's sperm in a surrogate mother? I don't even know if this is available in this country, but I'm sure I've heard of it. I'd advise asking your IVF team what all the possibilities are, so you have all the facts, and then having an open, honest, CALM (ie don't wait until you are cross with each other!) conversation with your husband about EXACTLY how you feel about him, your BC, and any possible future family. Make sure he understands just how emotionally challenging geting through BC treatment is. (Perhaps suggest he reads some of the posts on here?) 

 

I can say that as time passes, you will start to feel more back to 'normal', when you have had time to recover from the hideous things that have happened to you with dx and treatment,, so don't rule ANYTHING out yet. You don't know how you'll feel in 12 months time, never mind 5 years!

 

I wish you and your husband all the best at this difficult time. x

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Re: Any advice appreciated

Thanks very much for your post Lakeslover. It really is an incredibly hard decision, almost impossible in fact. My husband isn't trying to pressure me to try for a baby now, he says though that he would expect me to be expressing more sorrow at not being able to start the family we had planned for, now. To be honest though, I feel like I'm only just getting my head around what has just happened to me - babies seem so far away now and, dare I say, less important than before? I don't know if that makes me odd to feel like this, I know some people are desperate to start a family. I just feel lucky to be alive right now and can't seem to focus more than a few days in the future. He talks about the years ahead, whereas I can only think in days, not years. I feel like everything is so uncertain - everything I previously took for granted has been ripped away.

I know what you mean about positive changes, I think a cancer diagnosis does bring into sharp focus what is really important. I love my husband very much and wish I was able to give him what he wants. In the heat of an argument I say he should go and find someone with whom he can have children, as I said I feel I am holding him back. I would be devastated of course, but at the moment I feel I am dragging him down with me.

Thanks again for taking the time to reply, I really do appreciate it.

K x



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Re: Any advice appreciated

I don't envy you your dilemma at all. It is an incredible hard decision, and I am sure one which would have a different outcome for different people.

As for normality I am now 2 years post diagnosis and NED but my normality is definitely different from before. I don't think it will ever be the same again, but have to say some of the changes I have made in my life are definitely positive, the low level background worry about possible recurrence Is not.

There are the numbers, and the feelings. Which would you regret most, losing your chance for a family and maybe your husband, or having a recurrence? An impossible dilemma I am sure, and one none of us would want to face. I wonder if you really need more time post treatment to make that choice? Will your husband give you that time? If not is he the right man to support you through pregnancy and bringing up a child, and a possible recurrence (sorry if that sounds blunt). Of course you could give up the chance of preganncy and still have a recurrence.

I had to decide between chemo or no chemo. I opted for no chemo, but had to accept that if I have a recurrence it may have happened anyway, and not blame my decision.

So I think what I am saying is whatever your decision it is your decision, and you need to be comfortable living with it.

Whichever you decide my thoughts are with you.

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Re: Any advice appreciated

Hi Lakeslover, thanks for your response. Yes my oncologist said the new guidance advises the use of Tamoxifen for 10 years now rather than 5. My husband and I had discussed this and thought that we would try after 5 years and then go back on to Tamoxifen for the remaining 5 years. I'm 33 so this will put me at 38 when we were first trying for a baby.

I think it's a good idea to speak to my oncologist about the risks involved. Knowing him, I think he'll advise against it though - certainly in the first 5 years of Tamoxifen. He looked at me like I was crazy when I asked to be referred for IVF before chemo. Sometimes I often think I was crazy to go through IVF and delay the start of chemo - who knows what that delay could result in?

I think I'm just battling with it all at the moment and trying to regain some sense of "normality". At first I thought the whole experience had brought my husband and I closer, but now it just seems to be pulling us apart. I don't blame him at all for wanting to become a father, this is his life and future that has been affected too. I feel like I'm holding him back and can no longer give him the future he wants. This disease takes away so much from us 😞

Thanks again for your responses x
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Re: Any advice appreciated

This may add to your dilemma but I think NHS guidelines are currently changing to recommend 10 years of tamoxifen rather than 5 as the extended time has been shown to be of benefit.

Would it help you to ask your Oncologist if it is possible for them to estimate the extra risk if you have a pregnancy? If you knew the risk was say 1% or 10% (just numbers as I don't have a clue what the risks are) would it make it easier for you to decide? Or even if it is 1% would you still rather not chance it? Also would the risk be different if you took a break from tam to do it in a year or two's time, compared to waiting until you officially finish tam?

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Re: Any advice appreciated

Thanks very much Curleychris, I really appreciate your kind words x
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Re: Any advice appreciated

Can't give any advice but just want you to know I am thinking of you. Try to take each day as it comes for now. Maybe speaking to others who have gone on to have children with a similar diagnosis will help.
Take care and be gentle with yourself you have taken some hard knocks and need to recover.
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Re: Any advice appreciated

Hi KAM80

In addition to the support you will soon have here our helpliners are on hand during the week 9-5 and Saturday 10-2 on 0808 800 6000 so please feel free to call for someone to talk things over with

Take care
Lucy BCC

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Re: Any advice appreciated

... too risky for you" rings very loudly in my ears. I almost see it as a choice of living, or having a baby.

I had high lymph node involvement and as such feel it's only a matter of time before my cancer returns (if it ever went away). My husband says that if it were the other way round he would want to take the risk in order for us to have a baby. It's starting to cause huge arguments between us and I just don't know what to say or think anymore. Am I being selfish? Should I try for a baby? I feel I'm still in survival mode at the moment and all my actions are designed to help me survive and beat this disease.

Sorry, that's a very long post, I just needed to write that down.

K x
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Any advice appreciated

Hello,

I hope everyone had a lovely Christmas and New Year. I'm just looking for some advice from you lovely ladies who may have been through this.

My husband and I married in October 2011 and I was diagnosed with breast cancer in September 2012 - hardly a great start to married life! My husband has been great though and supported me throughout treatment - chemotherapy, mastectomy, radiotherapy and now Tamoxifen.

We were planning on trying for children in the new year of 2013, but obviously those plans we're put on hold when I was diagnosed. I did however undergo a round of IVF prior to starting chemotherapy and we successfully managed to freeze 15 embryos.

My oncologist said to me at the outset though that it may always be too dangerous for me to carry a child, due to my ER score of 8/8.

Here is where the problem lies. Now that active treatment is over, my husband wants assurances that I still want children and that as soon as 5 years of Tamoxifen are over (or less) we will try for a baby. I have always wanted children, but just don't know how I feel anymore. The oncologist' words of "it may always be t