Hi,
I was diagnosed July 2008 ,grade 1 ,3 lumps though so underwent a mastectomy and immed LD recon and have been on tamoxifen since.
My annual mammo and U/S was last week ,I asked about an MRI as only 2 of my original lumps showed on mammos ,the third was found by MRI.
I got my MRI today and holy sh*t they have found another lump on my mast/recon side!!!
I really wasn’t expecting them to find anything so it has knocked me for six.
I am worried now that they may suggest chemo or even worse removing my reconstruction!
I had a core biopsy but have to wait till Tuesday for results.
My recovery was a long slow one as I developed depression for which I now take ad’s.Just when I thought my life was getting back on track…
Dot
xxx
hello Dot
I just couldn’t ignore your post, this bl**dy disease does nothing but shock me and i felt compelled to reply. i have not long finished chemo and rads and trying to return to some kind of normality ha ha.
I hope that you have confidence and faith in the specialist team around you and i so hope that it is nothing sinister. If the worst fears are confirmed whatever treatment is given you will find the strength to get through it, we all do somehow.
I hope you have as good friends and partner / family as i do around you to give you the support. I was very close to taking ad’s, having been on them several times in the past, and i hope they are helping somewhat.
My thoughts are with you
take care xx
Hello Dot,
I had a lump in my reconstruction which was a huge shock so I understand how you feel. I had a core biopsy, the results of which showed it was scar tissue, or fat necrosis from the recon operation. I truly hope this turns out to be the case for you.
Will be thinking of you,
Best wishes,
Sally xx
Hi Girls,
Thanks for the replies.
Sally ,I do hope mine is the same as yours! They did say it could be fat necrosis (sounds lovely) so fingers crossed.
I was trying to interpret what they said and how they said it and must admit they were not very reasuring.At first they said it could be a vessel but then said oh its next to a vessel,so obviously its not a vessel then!
I only got MRI as “belt and braces” but if it is a nasty I will be so glad I asked for one! Its a tool that could really help in BC diagnosis but they seem slow to make best use of it.
Sally do you get mammos or U/S of your recon? I didn’t ,just got a grope from the consultant! I wonder how many slip through?
Blondebird,Thanks for replying,its hard getting back to normal? isn’t it?.
I struggled for 11 months before succombing to ADs but they have helped soo much.In fact ,I reckon I am coping so much better with this news because of them!
Thanks,
Dot
xxx
Hi again Dot,
At my first annual check I was given a mammogram and an ultrasound - this was because the mammogram at diagnosis did not show the lump even though I could feel it (this was probably due to dense breast tissue as I was 38 when diagnosed).
I was offered a mammogram on my recon but didn’t fancy it as it’s painful enough on a “normal” boob! My consultant in Norwich said that his team now do mammograms as routine on recon as he said they can still show up calcifications on skin sparing mastectomies and recons.
I’ve since had a prophylactic mastectomy and recon on my “good” side - but I’m not sure I’ll take them up on the mammograms, but certainly will ask for ultrasounds as that was the most accurate test for me.
All the best and fingers crossed - it’s horrid waiting isn’t it?
Sally xx
Thanks Sally,maybe you should ask for MRI in future as it will show both breasts regardless of recons/implants.Its a imaging tool that is vastly underused in BC due to its expense and lack of scanners.
I am worrying now that this “new” lump may have been there all the time.
Before my op last time I was told my 3 lumps were 15mm 5mm and 4mm.When the path results came in post op they said 13mm 5mm and just a few cells…so could the 4mm one be the one I have now?
In a way that may be the best outcome as long as it hasn’t spread as I find the thought that I have sprouted a new BC much more alarming.This would suggest the Tamoxifen had not being doing its job.
On the other hand if its been there for a year,its had more time to travel…or would the tamoxifen stop that?
Also if its BC do they take or test more lymph nodes?
1 day down 4 to go
Dot
x
Could anyone tell me the difference in new primary and recurrance?
How would a recurrance effect my prognosis?
Only one day to go…
I have loads of questions to ask re Whether its been there all the time. I also intend to request copies of path reports /x-ray reports.
I can’t believe I am here again!
Hi dotchas,
Could I suggest you give the helpline a ring and have a chat with one of the nurses here, they’ll be only too happy to talk to you. Calls to the helpline are free, 0808 800 6000 open M-F 9-5 and Sat 9-2. Hope this helps.
Kind regards,
Jo, Facilitator
Dotchas
I would like the answer to that one as well, my biopsy is still being tested to see if its a recurrence or a new primary, is one better than the other? I’m not sure I want to know, that’s the trouble asking questions, might not like the answers.
Jan
I think one possible difference is that a new primary could be a different grade and type… and also could be er or her2 pos or neg unlike the first - so need different treatment…
Theresa
Thanks Jan and Theresa,I am just so unsettled and feeling let down about this.There have been a few “hiccups” in my diagnosis and treatment so this is just the icing on the cake.To be told on 21st July that I was all clear of cancer.(at the time)then to be told on 30th July that I have another tumour.It was discovered on the MRI I requested but would not have been given otherwise!!!
I hope the new one is the same as the last ones as they were grade 1 tubular.
I think from what I have read mine would be classed as local recurrance as its in the same place as my original lumps.
Jan,whats your story if you don’t mind me asking?
Not at all, I’m fed up and disillusioned as well.
I first had bc in 1985 when I had a lumpectomy and rads, recurrence in 2005, this time mastectomy with immediate LD reconstruction.
At my follow up appointment in Jan 2008 I mentioned my concern about a lump under my arm and after an ultrasound was told not to worry it was a leak from my implant. I mentioned it again last January and was told more or less the same. A couple of months ago I decided I wasn’t happy and went to my GP who again said “if the hospital are happy then so am I”. However, she referred me to a plastic surgeon to have the implant replaced, but I was more concerned about the lump which he agreed to investigate first. He took out 2 lymph nodes one was effected by a leak but the other had cancer cells. That was just over 3 weeks ago so playing the waiting game at present.
Well you did ask.
Take care
Jan
Jan,so sorry to hear your story.I find it amazing that Drs don’t listen to women who know their own bodies.
My problems have mostly been errors
3 lumps but only 2 showed on mammos so when they found 2 on ultrasound they stopped looking! The third was found on MRI.
Breast Clinic advised my GP on the brand of ADs I should get which turned out to be ones that research has shown to reduce the effectiveness of Tamoxifen.
No anniversary appointment given,I fell off the system!.
Now this,it certainly makes me fearful for the future.
I do hope you get the results soon and that its good news.
Fingers crossed for us both
Love
Dot
x
Oh God its D-day…
I can’t make up my mind if I want the appt to be here or if I should just run away.
I have to work today so hope I can concentrate.
Hugs
Dot
xxx
Dot {{{hugs}}} really hope that it is good news today…
Theresa
Hi Dot all the best for today.
I had my lumpectomy last year then chemo and rads which finished in May. For the last 6 weeks I have been concerned about a lump under my arm and finally saw my original breast consultant on Friday who thinks a contaminated lymph gland was missed during surgery which has grown and he has prepared me for the worst. I know exactly what you mean Jan about them not taking us seriously, last consultant I saw did an ultrasound and said she thought it was in ingrowing hair! Why is it taking you so long to get treatment plan Jan?
I just had my MRI scan this morning and will have pre op liver scan and meeting on Thursday where they will probably have the result of needle biopsy and scan. It is so difficult to concentrate on anything and I haven’t told anyone other than my oh and we have loads on this week I don’t want to cancel or family would suspect something.
Sending lots of love to all of you waiting for results and playing the waiting game.
All the best Anne xx
Hi Dot,
just wanted to say thinking of you and hoping so very much that you received some good news today
Hugs
xx
Well its not great news ,but it could be worse!
It is cancer and they believe (as do I) that it is actually remnants from my last surgery.They can never remove 100% of the breast tissue at surgery and it seems the bit they left had a wee bugger hidden in it.
My surgeon is devastated ,but actually this is the better option,because if I was sprouting new little buggers ,that would be much more worrying.
It is unlikely to have spread but just to be sure I am being “staged” which means bone scan ,chest x-ray and a liver ultrasound.This will happen on Thursday,the Multidisiplinary Team will discuss me on Tuesday and I get my op on Wednesday!
Just a wee op to cut out the lump and as a bonus he is sorting my back scar for me at the same time.My plastic surgery for that and my nipple recon will be delayed now:(
They may decide to give me radiotherapy,so I will need to wait and see.
So I have neither a “new” primary or a recurrance really just some left overs!
I actually feel relieved now I have a plan.I suppose I am a little anxious about the staging but he was in two minds whether do do it at all…but then again I think he wasn’t actually sure I needed the MRI scan
Anne,hope you get new ,do let us know how it goes.
Lots of love and thanks for being here,
Dot
x
Hi Dot
I am so pleased that your news is much better than it could have been - I certainly will be delighted if I get the same results. With your surgeon’s response I’m sure he will be keeping a close eye on you now which is very reasurring. Mine also seemed genuinly upset about and admitted his error in missing it in the first place so hopefully they will get things right now. Probably why they are being extra cautions with the staging - and quite right too!
I also have my pre op meeting on Thursday and op next Tues. Keep us posted on how it’s going.
Lots of love Anne xx
Hi Anne ,
Good luck for tomorrow.I also now have my pre-op assesment tomorrow as well as my staging.I already had a counselling appointment for 2pm so it will be a busy day.
Do you get MRI results tomorrow? Was it of the breasts?
I so hope your news is good!
I am a bit worried about having a glass of wine tonight in case my liver scan says “Chardonnay” across the screen!
The Superintendent radiographer in the breast unit who is a friend says “well you will get as many MRIs as you want after this!”
I would love to be a fly on the wall at the Multidisiplinary Team Meeting when it emerges that they missed a tumour!
Take care,
Love
Dot
xx