recurrence

just been diagonosedafter 5 years. in a toal daze can’t believe what i have just been told. Cancer again.
Had chemo, masectomy followed by a lapiso dorsi back flap was on tamoxifen 1 year then 4 year arimidex.
Why did they use some of my old muscle to reconstruct my breast if there is a small chance that it could still have cancer cells ???
don’t understand, lost faith in my consultant, really scared more than first time!!!
has anyone out there been through this awful thing, your support would be much appreciated.

Clowe I really empathise with you on this one. I was diagnosed again when I had passed the 5 year mark. You really think you are home & dry don’t you :(. At least I did back then - my first dx was in 1990. But once I got over the shock and treatment started again I felt much better about it. I have had a few other recurrences since then and I know it sounds odd but I just felt O.K. I’ve done it before and I can do it again. With the surgery you have just had they will have made sure they got clear margins before doing the reconstructions, which is the best they can do really. As a matter of interest were you asked if you wanted the recon? or was it just assumed? I chose each time (have had 2 mastectomies) not to have reconstructions. But that was my preference. If it helps to talk then ask away, or pm me if you want to.

Dawn
xx

Hello Clowe,
yes it is a hideous shock to be diagnosed again, after having got on with your life for years. I was diagnosed with a recurrence last June after 12 years and found it really shocking, but over time I have just got back into it, in a way, and having this forum has been an absolute lifeline.
You aren’t alone, there are plenty of us here who understand just where you are, and I know the others will also be here for you.
Please keep in touch - I guess you will have increasing questions etc
be kind to yourself
love, monica xx

Dear clowe

I just wanted to post to let you know about our support services which you may find helpful alongside the forums. Our helpline is open weekdays 9-5 and Saturday 9-2 on 0808 800 6000 and our staff are here to offer you further support and information. We also run a live chat on Thursday evenings, you can read more via this link:

breastcancercare.org.uk/community/live-chat/

You can read about our other support services such as peer support and telephone support groups via this link:

breastcancercare.org.uk/about-us/our-services/

Hope this helps a little
Take care
Lucy

I was first diagnosed in 1985 and went for 20 years with no problems, never thought for a minute it would come back after all that time. I was wrong I had a recurrence in November 2005 had mastectomy with reconstruction, then I had another recurrence last August this time on the opposite side so feel its more serious. It is a shock but as Dawn says once treatment starts it does’nt seem so bad.

Sounds like you did everything you could first time like taking your hormone tablets for the full 5 years. I gave up on my first recurrence because of side effects, I am on letrozole now and I will carry on taking them no matter what, but it makes you wonder if they really work.

Take care

Jan

Hello Clowe,

very sorry to hear the recurrence, is this on the reconstructed breast or on the opposite site? what type of BC? I had DCIS, mastectomy with an immediate reconstruction. I wish I had bilateral mastectomy done. I did ask my doctor why not remove both since there is calcification on the other breast too, although not as bad as the other one. The doctor was against bilateral mastectomy, I was told that it’s overkill and that the right treatment is single mastectomy only. I would rather have both breast removed and not worry about taking tamoxifen or arimedex, etc.

I hope you would overcome this. Stay positive.
Best wishes xx

i had a recurrence after 3 years… had surgery WLE almost to the day of previous WLE… it is a real shocker at the start but with time it does get easier.

clowe there is always a small risk of recurrence as they cannot remove 100% of the breast tissue theres always a wee bit left maybe about 5%, but obviously it reduces your risk considerably, the chemo, rads and hormones is meant to zap any stray cells left behind.

is the new tumour in a different place? it could be a completely new primary cancer which developed since your last one… mine was and this time hormone negative so the treatment for the first one didnt affect the second one.

hope you can get some of your questions answered by your team.

Lulu x

At last found the link for me.
Diagnosed with Breast cancer in 2003, had mastectomy and chemo, 5 years of tamoxyfen and been on arimidex for 1 year. Just been diagnosed with cancer in the other breast. Waiting for date of op. Last year my husband died. It’s not much fun doing it on your own… Soooooo alone. The doctors don’t seem to understand we have la life to cope with as well as this news. My appointment in only next week, then what. I had people coming for Easter, will I be here ?

awwww maria sending big hugs to you sweetie

its crap hey… you go through it all and you think you have it sussed and the bugger comes back and gets you again.

iv had it twice once in each breast.

i was alone the first time round but have a partner this time its a very different experience.

hope you next surgery goes well and you know there is a few of us going throughit again for the second or even 3rd time… also have a look at the thread called ‘a whole new world’ where there are quite a number of us 2nd time around

here is the link
breastcancercare.org.uk/forum/viewtopic.php?f=23&t=22848

Thanks Lulu
Maybe I should post on your link, not quite worked out how the forum works yet, it was different 7 years ago. I expect every thing will be different this time. The doctor who operetated last time and had been following me up ever since is sending me to another one this time. But I am releived to find I am not alone.

I have had a full mx with LD flap recon for multifocal lobular cancer almost 6 weeks ago they also found DCIS in most other areas of the right breast should I have asked to have the left one removed as well as I have been told there is a higher chance with ILC that it will spread to the other side? Due to start chemo next month and Tamoxifen after that. xxxTina