God I haven’t been on here for a while but here I am again. Went for my five year check up and what I thought was 2 lumps of fat necrosis they decided to do core biopsies and got a text tonight to say they are abnormal. Got to go and see consultant tomorrow to discuss treatment.
Short history 2000 lumpectomy and Radiotherapy. 2005 new primary same breast had mastectomy and immediate LD reconstruction. Now 2010 and two more lumps dont know yet whether they are recurrence or new primaries.
I’m not scared but just so p***ed off that I have to go through telling everyone again, my husband is away working and I have two sons in their twenties. I have to put everyone thru this again!! and sort out work…
Sorry just needed to offload… If anyone has been through something similar please email back. I want to know what treatment I am likely to have. I haven’t had chemo up til now and a bit worried I might lose my reconstruction.
Sorry to hear you’re going through this for a third time.
I’m currently having treatment for a recurrence - primary 2004, recurrence 2010. I also didn’t have chemotherapy or any other adjuvant treatment first time but this time I’m having the full works: mx, ax clearance, chemotherapy, radiation, tamoxifen, possibly ovaries out.
It really sucks. But I’m kind of glad I had more than 5 years thinking I was cancer-free without the SEs of chemotherapy and other drugs to contend with, and this time I’m ‘happy’ to be having everything going. I’m only halfway through chemotherapy and, having had a break of nearly 10 weeks now, I can say it’s bloody rough but you do get over it. I suppose if it’s a new primary, there’s less incentive to have chemotherapy, but perhaps it’s time to throw everything at it? That’s a very personal decision.
I undertsand exactly where you’re coming from; telling family was the worst bit, feeling guilty for putting everyone through this hell for a second time. It’s vile to go through it once, let alone 2/3/4 times and I feel I’ve let everyone down. Naturally in my more rational moments I see i’m being ridiculous - we’re the ones going through this, definitely bearing the brunt of it all!
I hope you get some answers from your onc which give you a good route forward with treatment. Things tend to feel better once you know what you’re facing. And I hope you don’t have to give up your reconstruction.
Hi cathy im not surprised your p----d off to do its once is hard enough but 3 times its so sad im sure you can tell me how gud this site is i wud hav been lost without it.Take each day as it cums try and not worry 2 much about your oh or the kids im sure they will be behind you 100% you have to deal with enough let us no how you get on im so sorry take care
I can relate to how you feel, I had my first bc diagnoses back in 1985, recurrence in 2005 when I had mx with LD reconstruction, came back last year on other side so was able to have rads again, and back on my reconstructed side this year, fortunately the lump was high near breast bone so was able to have it removed without too much disruption.
Like you I have never had chemo and wasn’t offered it this time either, I did actually ask why and was told I seem to be doing well without (not sure I agree) I am on tamoxifen, took Fermara for 12 months but that obviously did’nt work for me.
It is hard having to keep telling family and friends, mine are starting to get very complacent its happened so many times.
Sorry to hear you are in ‘that’ place again :(. I really think I do understand how it feels, having been there a few times. I went 6 years ok from the first dx - the 5cm tumour shrunk totally with chemo, rads followed but no surgery. Then like you it was back in the same breast - had mastectomy but 6mths later back in the skin of the mast. site. Then couple of years later 6cm in the other breast, two years on lymphy nodes up around collarbone, chest & neck, year on dx extensive bone mets.
One thing that occurs to me is that if you haven’t been told on previous dx what your her2 status is they should really be testing tissue from previous surgeries. I think with your previous occurrences they were not generally testing back then.
I don’t understand why you haven’t had any chemo before - are you on any hormonal treatments? like tamoxifen etc. In a way it is good that you haven’t had any chemos up to now - that leaves the whole lot to pick & mix LOL. Hope you get some answers soon & can get on with treatment.
Sorry you’ve had to pop in here again. Three times is just too much. I’m on my second bout. 1st time in 2000 and just recently in 2010. I’ve just started my chemo. I did have to lose my reconstruction, but, when i’ve finished with rads etc, i will be having another. This time using my tummy muscle. You don’t realise how good a reconstruction is until it’s not there! Not the end of the world though to have to live without it for a year or so.
Hoping you get some good news. Let us know how you get on.
Hi Cathy, I’m so sorry you have had to come back again, its so unfair. That’s what I thought when I had my 2nd primary (read my profile) Funnily enough, it has been easier 2nd time around. If I can beat it once, I can beat it again, but it does not stop the niggling worries or panic attacks when I get realy scared, but most of the time I feel very confident.
I can’t help with the reconstruction side of things, I am happy to have silicone falsies in my bra, and I had chemo both times
All the very best to you
Hugs
Maria
Thanks for all your comments. Have been back to see consultant this afternoon. Basically I have two grade 2 tumours. Apparently very rare for this to appear in LD reconstruction in skin.
Because he has to take a big piece away I cant save this recon and I am seeing a plastic surgeon tomorrow but may not be able to have another recon using tummy muscle because I have had previous surgery in that area.
I have scans Thursday then back for results and discuss treatment plan next week.
Would be interested if anyone has had recon using tissue from areas other than tummy and back. Also any advice on zoladex which I may also be having due to my being pre menopausal.
Its really odd going from being low risk to rare!!
Anyway I really appreciate all your advice and support and think I will be using this site for some time in the foreseeable future! To anyone new reading this please don’t be scared I have every confidence that I can be successfully treated again and as is evident from posts many of us have been thru this several times and come out the other side.
Thanks everyone
Cathy
Hi
I have not used this site for a while.
I was diagnosed with DCIS in 2004 had mastectomy and Tamoxifen for five years, was discharged in Feb 2010, then had a local recurrence in Sep 2010. Had surgery in Oct 10.
And am on Zoladex and Arimidex.
yeah it was annoying having to go thorough Cancer again. i really did not have time for it to be honest!!!
Has anyone been okay on this combination of drugs?
Take Care
Dolph
xx
I’m in similar situation. Mastectomy Nov 2009, now grade 3 stage 2 in new breast (LD flap reconstruction). I’d been back to doctor and cancer nurse in June and both said very rare to get it in a reconstructed breast, so didn’t push. They were wrong. It turns out that there was enough breast tissue left behind for the cancer to work its magic. Mine is just under the scar where the nipple was.
Just waiting for results of CT scan in case it has spread, but been told my chemo will start on 7th - so bone density, MRI, hickman line etc etc all to be done before then.
I’d just got used to my new breast and no idea if I can get another one if this one can’t be saved (not enough fat on tummy). Seems like the mx was a waste of back muscle just for a year.
Didn’t mean to talk about me! Just expressing similarities. I’m pre-menopausal too, but they haven’t said anything about zoladex - maybe that’s the next thing to learn about.
Third time must be terrible. Well done for being positive; I’d be interested in seeing the response to your question about anyone with any ideas about recon breast without tummy or back muscle. I did hear of a completely synthetic one kept in place with a net, but will do a bit more research.
My experience is totally different to yours so I can’t help with recon advice. I started off with rare and aggressive and had the Full Monty treatment. No recon because of high risk of recurrence but so far I’ve been very lucky. Won’t say any more than that just in case… Last herceptin due end December so not counting chickens.
I can totally sympathise with your anger and determination though. Get at it girl.
Earlier in this trail, there was a question about what sort of reconstruction was available if you’ve already used the LD Flap (and will need to lose it), but can’t have any of the abdominal tissue reconstructions. There seems to be something called LSGAP, which appears to be a new operation and is used for slimmer people. The info I read says it takes the flat pockets of fat (that even slim people have) between the waist and the hip (above the bottom). From what I have read, it causes fewer problems than taking fat from the bottom (less disfigurement) although not every slim person is eligible. Does anyone else know about this?