11 years later, I'm back here

First diagnosed in December 2000, had chemo, mastectomy and radiotherapy, 5 years of Tamoxifen and finally discharged from hospital in July 2011.

Two weeks ago I felt a lump above the mastectomy scar, had biopsies taken last Monday and yesterday had it confirmed as cancer at the breast unit. Doc said it’s a lymph gland so she wants me to have CT and bone scans done in the next two weeks before she does surgery to double check there’s no more lurking.

I feel quite stunned at the moment, it’s really odd telling family and friends again.

xxxxx

Hello Hello!

I am in the same boat - was first diagnosed in 1997 and had wle, rads and 5 years of tamoxifen and now 16 years later - I’m back!! I had mx on 9 November and about to start chemo - what a roller coaster!

It is horrible telling people its come back but with all the appointments and operation time passes so quickly.

Good luck with all your tests etc.

XX

Hello Hello & Kiwijan

Sorry to hear about you both. I’m back here after 6 years with a lump on the edge of my reconstruction (cue puzzled faces when I told people I was to have an MX on gbe same time again …lol).

Had an agonising week to wait for PET CT scan & results to see if it had spread and during this week of hell had to attend a work colleague/close friend’s funeral & give a speech - found hidden reserves of strength to get through that ! Had my MX now & just waiting to hear about the results from the testing which will determine what happens next. Hugs to you both at this difficult time. I was really lucky with no evidence of anything spreading.

Twinky x x

Hi a similar thing happened to me, first diagnosed in 1998, had WLE, lumpectomy, chemo, rads & Tamoxifen. Then it 2004 I had a local recurrence so then had to have a mastectomy & Arimidex. But that was nearly 8 years ago and I am absolutely fine now. I can remember being totally devastated & was more or less planning my funeral so I know how you must be feeling. Try to be positive, at least they can get on and treat it now and before you know it you will be fine again.

Lots of love
lbx157

Hi there

I had 20 years between my first and second diagnoses, I really felt after all that time no way would it return. My first was 1985 and second 2005, I have had 3 recurrences since then so I feel I’ll never be free of it now, just a matter of it being controlled.

Persistent little beggar.

Jan

Hi there Hello

I had bc in 2006 and had wle, rads and tamox. I got a new cancer on the other side in 2009 and wle Chemo and rads then 5 months ago had a recurrence of the second primary in the nodes in my chest muscle… Wondering if this is what you have… It’s very rare place to get cancer there only offer about 1 in 1000.

Like Janice now I feel that cancer is just part of my life and just have to live with it… The second diagnosis was the worst as it was my biggest fear coming true but this time I just kinda thought oh poop here we go again!

Good luck

Lulu

Hello hello! I’m so sorry you’re back here just when you thought it was all behind you and that you have to face the dreaded wait for results again. I was first diagnosed in 2003, then had my first recurrence 3 1/2 years later, and my second recurrence 5 years after that and the worst part of all of this is trying to stay calm while facing the unknown. It gets easier to deal with once you know what your situation is and what your treatment plan will be. And, of course, we’re all here for you every step of the way. Sending cyberhugs (((((((()))))))) and hoping for good news when you get the scan results, Angelfalls xx

Hi
Its horrible being back there again isn’t it - just when you think its all over. I was first diagnosed in 1999 and had WLE, rads and Tamoxifen. Diagnosed again in the same breast but nothing to do with the previous one on 13th December 11 and am due to have MX/recon on 16th Feb. Take care.

Lemoncake
x

Wow, I hadn’t realised there are so many of us out there.

Thank you all so much, really has helped knowing you’re all out there to ‘chat’ to.

I’m having both CT and bone scans done this Friday so not much longer to wait.

Sue

Latest update.

The scans were clear so it hasn’t spread. Will be having surgery within the next few weeks, just waiting for a call from the hospital to confirm the date. Then chemo again, no radiotherapy because I had that last time.

Sue

Good news that there is no spread. What a relief! Good luck with the op, recovery and subsequent treatment. Keep us posted.((((Hugs)))) Angelfalls xx

Sue excellent news it hasn’t spread. Hope you treatment all goes well

Lxx

Hello, have they told you it’s a recurrence of the original cancer, or is it a new primary?
If it’s a recurrence, at least you have the comfort of knowing that it took 11 years for it to get going again - so it seems to be a very slow growing cancer.
Actually, I met a woman the other day who was diagnosed with secondary breast cancer 15 years ago, and she seems to have a bit of a flare every three years - has treatment which always seems to work, and then carries on as normal (so try not to worry).

It’s a recurrance from my primary, I asked and she said definately not secondary. She also said it’s rare for this to happen and normally it would be 20 - 30 years later, interestingly she also said there was another lady at the clinic yesterday in the same boat as me.

Sue

hello,

can i ask what was the first primary lump, grade etc? i assume it is estrogen positive again then?

hope your surgery goes well.

TTM

It was found to be 2 nodules which had merged together when I finally had surgery after 6 months of chemo.

Invasive Lobular/Ductal, notebook says grade II.

I’m not sure if it was oestrogen receptive to be honest and am assuming they’ll be testing this one after the surgery.

Sue

Surgery planned for Wednesday 7th Match so not long to wait. I went for the pre-op assessment clinic yesterday morning and then received a call in the afternoon.

Sue

sue good luck on the 7th… Not long to go.

What chemo did you have last time and what will your be getting this time?

I had epi-cmf first time and just completed 6 cycles of taxotere and carboplatin.

Take care
Lulu xxx

I haven’t been told yet what the chemo plan will be, find out after surgery.

Last time I had four sessions of AC and then six of Taxol.

Sue

Hi everyone,
I’ve been avoiding coming back on the track but really pleased to see i am not alone. Following my mother’s aggressive breast cancer 18 years ago I demanded a mammagram and by luck a 2cm DCIS was found with some lobular. I was offered two mastectomies but opted instead for a quadrendectomy on that breast. Five years later 1.5 cm tumour was found by accident in the other breast when I had a breast reduction. On that occasion, nodes clear i opted for radiotherapy alone.
Hoping for the best I was disaapointed recently to have a recurrence on the first breast after 17 years- a 3cm area of DCIS and 0.5 cm cancer. Luckily yet again they have got a very clear margin and my nodes are clear.
My mother eventually died of breast cancer after 17 years. In addition my sister later ended up with breast cancer in both breasts- she needed both chemo and radiotherapy but has been clear for 10 years now.
Although there is no previous history of breast cancer before us and genetic testing was negative we have no explanantion as to why we have this cluster. When I had my DCIS removed the thinking was radiotherapy was of no benefit but I wonder if it would have made a difference?
Basically my choice now is whether to have a mastectomy or just radiotherapy. I’ll be having an MRI to check the other breast too but even if that’s clear i wonder if now is the time to consider both mastectomies.
Looking at everyone’s experiences and my own and my family’s i know how complicated this all gets. And of course there is the emotional journey- last time after treatments I got hit by a post traumatic stress response- why does nobody every prepare us for that?
I am lucky that its early, they got it all and I can take my time to decide what’s best for me. Intellectually I know a lot about my options and what’s involved but its the roller coaster ride i hate.
I would be very interested to hear from anyone who has had a recurrence about their own decision making process and also how they got through the traumas of it all.
Well here goes.
Best luck to each and every one of you.
mariadebbie