Fist diagnosis 1970 had mastectomy right side,1993 first recurrence followed by radiotherapy put on tamoxifen,1997 second recurrence followed by chemotherapy put on arimedex,now here we go again with third recurrence,at present taking aramasin but have to consider going down the targeted chemo route.Am to have another ct scan and bloods this week then back to clinic.
Oh Maggie, I’m so sorry to hear whats happening to you. I am on my first recurrence (would like to think my last, but doubt it) and I know how crap one is, never mind 3!
I had my first diagnosis in 1997 and I just wanted to say how much things have changed in my experience since then - things are much tighter, much better set up and there is a lot of support in dealing with it from all perspectives.
One of the biggest changes for me is this forum, I look back and I know I would have done so much better, psychologically, if I had had this forum then. I’m so glad you have found it.
do you know size, grade, Her2/oestrogen and progesterone receptive status etc yet?
let us know how things go on
love, monica xx
Hi daisyleaf
You are so right in saying things have changed,I’m so confused with it all, sizing and grading has not been gone into,apart from telling me the recurrence in chest wall result from core biopsy positive and is HER2pos/oestrgen.[biopsy done 5cms under mastectomy scar]
My next oncologist app is next week,will have another ct scan thurs/along with bloods.
At my last app he gave me the info on herceptin + taxotere the other option was a chemo research trial but have been refused for that having had chemo before,
Have had tamaxofen, aramidex,and at present have been put on aromasin,until I decide which path to go down have got to think re quality of life.
Which ever way I go, psychologically this forum will be a great asset I hope.
Will of course let you know,hope all is well with yourself
love sue xx
Hi sue, I was diagnosed 18 years ago and then had a reccurence and have had a mastectomy and chemo now on arimidex.Couldent believe it after all that time its such a shock, must of been even worse for you.You have been living with this awful disease all that time, keep talking as it definetly helps.I hope they decide on treatment plan for you soon.Have all the reccurences been in the same place. Let us know how things are going love suzan xx
just wondered how old were you the first time you wre diagnosed love suzan x
Hi suzan,I was first diagnosed Sept 19th 1990 had my 37th birthday Dec that year,had a mastectomy within days or being diagnosed,1st recurrence two years later had surgery followed by 4wks daily radoitherepy, then put on tamoxofin,2nd recurrence early 1997 had surgery again followed by 6 chemo sessions and put on arimidex,all last year kept telling them all was not well,finally they too realised this when they did a core biopsy on an unusual looking nodule,do believe they were suprised at a positive result,then came the scan and blood test app, a change of hormone tablet to aromasin,am to have another scan and bloods tomorrow.
At last clinic app the oncologist gave me info on taxotere+herceptin chemo regime as an option.
Am armed with so many questions for him he won’t know what has hit him,next week when I go back to clinic re treatment plan
Surgery not an option this time
All the recurrence’s different areas around orginal scar.
Hope all is now with yourself and thank you xxx
Hi sue same year as me only I was 39,go in with the guns blazing when you see the oncologist and make sure you get the right treatment for you.Did they give you a ct scan and is the recccurence confined to the area around the scar.Some ladies do well on some chemos its a case of finding the right one for you. I dont know about you but sometimes its just so tiring dealing with it all, seems as though all of our lives have been lived with breast cancer.Hope things go well for you and keep in touch there are quite a few of us on here that can support you love suzan xx
Hi ladies
Well things seem to be at a stand still for now, results from scans show very little change oncologist saying we are to continue with the aromasin and wants to keep the chemo path open.
Am to go for a MRI scan before going back to clinic later this month,BC nurse coming out next week,
So much for me going into clinic armed with questions,still its good my recurrence has not increased its invasion,control it we can,cure it we cannot.
Thats my moan over hope you all well
xxxx
Hi Maggie,
Sorry to hear you are battling with this wretched disease yet again. I am another dx a while ago now - 1990 the first time, then I had 5 years clear and it came back in 1996, 1997, 1999, then 2ndaries in 2002. What I found interesting was your remark -
“At last clinic app the oncologist gave me info on taxotere+herceptin chemo regime as an option.”
It sounds like me that you may well have been HER2 positive all along, but of course it wasn’t known about back then. When I was found to have secondaries (extensive bone mets) in 2002 I had a couple more chemos which failed to keep it in check so they checked on tissue removed in 1999 and found it was her2 positive so I went straight on to herceptin and it has been kept well under control since then.
Trouble is if you don’t have chemo this time and it is more than 6mths since last chemo they wont put you on herceptin (at least I don’t think they will) so this could be worth discussing with your oncologist. Are you more at risk if her2 positive of it spreading elsewhere to your organs if you delay going with the herceptin/chemo route.
Dawn
xx
Hi dawnhc
Thank you for comments,my oncologist is saying as there is little difference with ctscan results he wishes to keep that option open,yes taxotere +herceptin are the ones he is proposing,even though my last chemo given 1997.
Different hospitals and specialists have a different approach I suppose…
Am at present prepared to continue with his advice at least until the MRI Scan,he has served me well since my 1st recurrence in 1993[still here fighting].
Am pleased to hear your cancer is well under control.
Yes am sure have heard and read her2pos can be and spread more aggressive.
Take care xx
Dear All,
Very sorry to hear about your recurrences,it must be a huge shock especially after such a long time. But I hope and pray that you would pass the hurdle and that the treatment works.
BTW, was it lobular or invasive ductal carcinoma type?
Hello all. So sorry about your recurrences but I have to say it has made me feel slightly better in the sense that I too have had local recurrences and thought the surgeon mustn’t have done a good job. I had a mastectomy in 2004 (aged 39) a local recurrence in 2005, 2007 and another one now (am waiting to be called for the op). I had chemo and Herceptin after the last nodule was removed and am currently taking Aromasin. I really thought it was rare to have recurrences after a mastectomy but obviously it isn’t. I thought my life wasn’t getting back to normal but obviously this disease is something we have to live with. Do you think these recurrences could be caused by not cleaning out the tumor properly in the first place? My recurrences have always been next to each other. I also had an implant after my mastectomy. Was that the same for you ladies? Would it have been better not to have had it? I’m wondering now if the oncologist will propose more chemo. Good luck to everyone in their battle. Love Elisa
Hell
my first diagnosis was in 1997 when I was 38, had grade 1 IDC, 9.9mm. treated with mx and tamoxifen and had recon(TRAM flap) 2 years later. My recurrence is in a different area to where the first lump was - same breast, obviously, and had mutated to grade 3, otherwise the same in terms of HER2/hormone receptivity. I don’t think its because of how it was treated, but could be wrong!!
hope everyone is doing OK
monica xxx
elisa
although they try to take away as much breast tissue as possible during a mastectomy they cannot guarantee to remove every single breast tissue cell… recurrence after mastectomy isnt common but it does happen.
iv only had one recurrence but was actually a new primary in the other breast, 3 years apart… have had lumpectomy in both sides… first was in 2006 when i was 37.
Lulu x
Hi Elisa,
My first occurrence in 1990 was treated first with chemo because it was a 5cm tumour, then rads. Nothing was showing on scans at the end of that so there was no further treatment. i.e. surgery. I think my dx was er/pr neg and IDC but back then I don’t think so much info was given. When I had the next occurrence 6 yrs later my breast was very hard from rads and it seems quite difficult to identify the tumour. I kept being told it was due to continuing changes with rads. I must say I got very angry at this because I just knew the changes I was finding were something much more sinister. By the time I convinced them a tumour had just about filled the breast but was not IDC. It was lobular this time. I had a mastectomy and six months later had skin nodules on mastectomy site. Obviously that was a spread from the lobular tumour because however well they clear out with a mastectomy some skin is left. I think this would apply with a tumour that grew very near the skin as well. The next time it came back 2 years later it was in the other breast and again lobular 6cm er/pr neg her2 pos. By that time HER2 was known about and in a sample of skin tissue this was found but not mentioned at the time. It was only after a couple of chemos with secondaries that the onc checked it out and found I was her2+++. Even though I am with one of the best hospitals in the country I do still have some criticisms amongst a huge amount of praise for them. I think these days women are much better at questioning their treatment and what is being told them. We have breast cancer forums like this one where we can compare notes and ask each other questions but for those of us diagnosed some years ago it was much harder to question the experts.
Dawn
Hello all and thanks for your comments. My operation is booked for Wednesday 7 April. Shouldn’t be too bad but I live here in L’Aquila where we had the earthquake last 6 April so I think we’ll all be a bit jittery on Tuesday, the anniversary. The hospital was very badly damaged and I think that the operating theatres are still closed so I’m not sure where they will actually be operating. Take care everyone.
Elisa
xx