Hi Ladies,
My Name is Tracey, Diagnosed Feb 06. Grade 3. 3cm Tumor Left Breast. Lymph node involvment 5. Full Ancillary clearance. 1 super clavicle sentinel node involved.
Her 2 +. er+ pr-.
Left Mastectomy chemo rads Herceptin. Now on aromasin.
Now 43 yrs of age. On diagnosis 41yrs. Married lovely Husband 2 children youngest now 13.
I would like to hear from Ladies who are still doing fine because It would certainly give me a boost. to say the least.
I am post dx 2 yrs hopefully still doing fine but yes do feel like a hypercondriate!!! not sure of spelling pls excuse.
I often come on here and would love to view profiles so I could see how people are doing with a similar diagnosis as myself. I know there did used to be profiles but would love to follow others and no doubt there are other ladies on here to who are just diagnosed with similar lymph node involvement etc
Please girls I would love to hear from you.
Also I often visit the Ladies in the Secondaries I am very interested and those girls Ladies there are an absolute inspiration to me and others!!
When I read of others who are initially given a poor prognosis who are still doing really really well if uplifts me. And no doubt it would others too.
Sorry for nattering on but I would so love to hear from other ladies still doing really really well.
I post all over the place about how long I have lived with this disease!! but I think threads that get a sprinkling of good news lift us all. I was dx 18 yrs ago at age 45 with a poor prognosis but responded extremely well to chemo and back then if they shrunk the lump completely they didnt always go for surgery. I did have a new primary 6 yrs later (and I know some would say well this isnt good news but hey I’m still here). My tumours are very aggressive, grew fast and were highly likely to recur as I am HER2, but a few years back this wasnt discovered. I had a recurrence 6 months later again, then another primary 2 years later. A year later I had a lot of node involvement in the neck and clavicle & chest area, and then had a 2ndaries dx of extensive bone mets 6 years ago. Yet I still enjoy life, continue working, am relatively pain free and have passed many milestones I never expected to see. I would say life is good and live with cancer minus a few bits & bobs.
I think Dawnhc is an inspiration to all of us! As you know this disease can be so unpredictable, but a lot of us (even with secondaries) are still around and doing (sort of) ok. I too had grade 3 tumour and recurrence with lymph involvement to level 3 (superclavical) and vascular involvement. Whilst my oncologist said that my prognosis was poor, and I will have to have very regular 6 monthly chekc-ups, I am fine with no evidence of disease. I’ve had a few ‘scares’ along the line, and once you’ve been dx, they always will have to take any symptoms seriously, and I must admit, get a bit fed up sometimes with this constant round of tests etc. But I try and have a good life. Like Dawn I first had breast problems in my latet 30’s, numerous ops to remove calcifications etc. and then finally the first dx of CA in 1999, so all a long time ago. But I re-married during this time, only gave up work after the second dx, but enjoy my grandchildren and my hobbies and am very active - lots of swimming and walking. I enjoy our holidays and apart from being extra careful because of lymphoedema in upper arm and chestwall, can do most things. I think, like all of us with a diagnosis of BC, we have good periods and then suddenly a down day or two. I haven’t been on here for many months, but then when the odd scare raises its ugly head again, come back for some support and advice. So, in conculsion, yes there is still a very good life, full of promise and hope.
Hi, I need some positive stories too. I was diagnosed in 2005, grade 3 triple negative, just one lymph node involved, stage 1. One year later recurrent in the same breast, everything was going fine until some months ago, when a supraclavicular node got swollen, and then went back to normal. 2 biopsies were negative, Ct scan revealed just 1 node of 1.1 cm, and the doctors were quite confident it was just an inflammatory thing, but just to be on the safe side, they sent me for a PET scan. It was such a terrible surprise, some supraclavicular and mediastinum nodes were positive, even if very small. Well, I am still in a state of shock, I cannot even believe I am writing this.
since I have done already EC, Taxol, carboplatin, xeloda and radiotherapy, I have been enrolled in a trial with a new sort of chemo. I am now 42. I would like to ask the others that are or have been in the same situation what chemo they have used that worked. Thank you so much for your help, any positive feedback of suggestion is so very welcome.
I have done a few chemos and guess they have all worked for a while. For starters I had mytomycin, methotrexate and mytozantrone, then 6 yrs later ECF (one not often used in that combo now of Epirubicin, Carboplatin & Fluoruracil), then next time (and these were all new primaries, not spread from old ones) I was on taxotere which was not often used for primaries then unless advanced. When I had the nodes come up in chest, neck and collarbone I had first of all xeloda but was stopped half way thru because it just didnt agree with me, and then switched to navelbine. Since secondaries were dx 6 yrs ago I havent had any chemos as they found my primaries had been HER2 (which again wasnt around most of my time). I have for the past 4 years been on herceptin and everything seems well under control. There are quite a few drugs I think that you havent had yet, and many new combinations, as well as new trials. JaneRA is pretty knowledgeable on triple neg and what is out there and I am sure she will add her wealth of knowledge to this thread.
Hi Tracey
My diagnosis was very similar to yours, I was dx in Nov 2001 3.5cm tumour Grade 3 stage 3 with 7 out of 14 lymph nodes involved. I am er + I don’t think they tested for her & pr then as herceptin was not on offer. I had a total mastectomy, chemo of 4 fec and 4 taxotere, 15 rads, 5 years Tamoxifen and started Femara in June.
I was told my prognosis was poor, aggressive tumour, many lymph glands but to date I am very pleased to say I am NED and long may it continue.
I still live with the shadow of doubt and I think we always do but I also think about how lucky I am to be living a good life.
These forums are wonderful. When I was dx they were not around. Good luck
Love Linda x
I was diagnosed Dec 05, 8cm tumour, 15/20 nodes, ER+, PR+ and HER2+++,.
Still here and currently well, had loads of scans last year before recon and all were no evidence.
Am now 39 and planning what to do for my 40th this year, at one time did struggle to think I would still be here never mind NED. When I first got diagnosed I was so scared after Onc went through path report in fine detail, however went to my local support group and met lady who had 10/10 nodes 10 years previous and was still NED so it does happen.
We all wish for the good, but who knows who is going to fall on the right side of the stats.
hi tracy just browsing the sight as i am pretty new to it even though i was first diagnosed with breast cancer at 41 two years ago so were the same age I have three children two girls and a boy my youngest being 17 sadly my husband passed away just siz months before I was diagnosed.Anywaymy cancer was stage three grade three thought not to of spread but on thursday told it was in my spine and probably been there from the beginning but never scanned me must of travelled by my blood not lymph as I had ten removed all clear.just like to wish you good luck
I was diagnosed in October 2003 having been misdiagnosed 7 months earlier. Had chemo before surgery but at surgery still had mastectomy and 23/25 nodes with cancer. Scans then NED. I had further chemo (taxotere) and rads and finished tretament in August 2004. Always expected recurrence but lived well and NED until April 2007 (much longer NED than I’d expected…or onc for that matter.) Got regional recurrence last April in supraclavicular nodes and chest wall. Had vinoriloine and xeloda…average repsonse…tumours grew again…now on carboplatin and gemzar…tumours sort of stable. Last CT in December showed NED in major oragns…will have another CT in 6 weeks.
Not one of those ‘and she lived happily ever after, grateful for all she had learned from cancer’ kind of stories…but hey I have retired, moved out of London which I like, still here and love being alive. Triple negative so not a lot of treatment options left, but on good days I just reckon I’ll face that one when I have to. The sun is shining today!
Dear Dawn,Birgit,Quattroformaggi,Dawn,Linda,Debbie,Sizey and Jane.
May I take this opportunity to say THANK YOU all because it has certainly uplifted me and I am sure it will others.
Perhaps I will contact the moderator and ask if they could start a new discussion heading with what we have spoken about as when you are having a bad day it could lift a persons mood who may have been recently diagnosed to show them that there is light at the end of the tunnel - so to speak.
Also I know we are all individuals and no two Breast cancers are the same although similar in initial diagnosis but I just feel that when you do have a poor prognosis its soooooooooooooo good and uplifting to look at others that are still doing well and some not so well but still around to tell their story. As previously stated I often go into the secondaries heading. I look for information, other peoples experiences of this Bl–dy Cr-p journey that we have to endure.
Some Ladies wont know if they are triple neg or if they have poor prognosis as it would not do for us all to be the same I do know my path report all the ins and outs etc, initially it did frighten me and those around me but thats just me I often find people who are not experiencing BC saying that perhaps I am too knowing but yes thats just me!! We are not all the same I just want to know everything ITS MY BODY!! - LOL
I love to read how Jane is doing and Dawn- I feel they are so informative its brilliant. Debbie what you said regarding the stats you are so right. We all hope we fall onto the right side. Sizey, well you have certainly had your fair share to say the least - I am sure you will receive alot of good advice with regard to the spine mets from the secondaries forum as you are probably already aware.Quattro, I am sure both Dawn Jane and many of the Ladies who post on the secondary forum will be able to offer some guidance. Jane, yes the Sun is Shining, and may it shine for many years to come for all of us.
Keep posting Ladies it picks us all up when we hear of someones experiences many years down the line. We seem to hear of all the bad but Not the POSOTIVE. So pls do keep telling us the posotives it certainly has changed my mood.
A big hug to you all
take care
Love
Tracey
xxxx
Thank you Dawnhc and Jane for your information, it makes me feel a little better to know that there are other therapies I could try, and I hope this new one I am trying now will be of any help, also for other people. For me it has been such a bad surprise after many months of good results from the tests, that I still have to come to terms with it. Also for the doctors it was quite unexpected, but here we go… anyway I am feeling better and probably I will manage to get out and go back to work soon, instead of watching TV the whole day!
thanks a lot
I have posted this under the “treatment” forum too , so apologies for the repetion but as it’s a positive comment I think most will forgive me.
I have a friend who had a less than ideal porgnosis at diagnosis. Trip neg, 3 tumours measuring 7cm and 14 nodes pos. She was treated with chemo (8x FEC) , mastectomy. radiotherapy. She is NED -5 years in April.
Keep well everyone.
Cherry
Diagnosed Oct 2003. 8/13 nodes after chemo before surgery (bad), so had more chemo and late herceptin. her2+, er-,pr-. Diagnosed six months after pregnancy (also bad for prognosis). Don’t post much because very busy, but NED.
cb102, thank you for asking that as i was just about to, and thanks Lucy for explaining it, but can you tell me at what point in your treatment or follow ups do you know this ?
As far as I am concerned, we are all NED unless told otherwise - ie after original treatment to remove the cancerous bits, and without any symptoms of secondaries.