Thank you for your reply and encouragement.
I guess I need to learn to live WITH cancer now rather than hope I would never have to deal with it again. Its a process and the scan results are terrifying me, the wait. In my mind I am :riddled: with it, I try to play out the words from the surgeon as she explains the reports to me and what can or cant be done. I am sure this is all very typical.
I hope you continue to stay well for a long long time xxx
i just wanted to say that I’m metastatic triple negative too. Diagnosed June 2019 with cancer in the lymph nodes (neck and underarm), and felt the same way as you describe. I’d had primary breast cancers twice before, each time having surgery, chemo and rads and a double mastectomy. When I got my secondary diagnosis I knew I just couldn’t go through it all for a third time. I was beaten!
I had my oncologist greet me with tears in his eyes and his head lowered muttering ‘I’m so sorry, I’m so sorry’ before we even got into his office!
anyway to cut a long story short...
Ive been on Atezolizumab and nab placitaxel treatment since last August and my last two scans have shown ‘no evidence of active disease’. I have been well throughout the treatment (it’s chemo but not like the chemo for primary cancer). I am fit (in fact fitter than I was before) and feel very well and planning to stay that way.
so, hang on in there....things have changed since the 2014.....you are not beaten!
Thanks for your reply and sorry to hear of your news. I can imagine after all those years you were confident you had escaped a come back 😞
When you say sternum do you mean in the chest wall (bone) or in the skin?
Sending hugs from a fellow 51 year old.
My primary was 12 years ago, and secondaries diagnosed last October in my distant lymph nodes, which seems quite rare, was initially told I had lymphoma up biopsy showed bc. I also have it in my sternum. Less than 2 weeks after my secondaries diagnosis I was also diagnosed with a pulmonary embolism, so things seemed quite bleak for me last hallowe’en, but here I am to tell the tale, luckily responding well to treatment.
the waiting is awful, I really hope you get a plan soon and it’s a good one for you.
take care and hugs
thanks for replying.
Was your reoccurrence specifically "skin mets" or "cutaneous metastasis" or a new growth under the skin as there is a difference between the two. I thought I had a local reoccurrence (and I do in the sense that there are skin cells in the failed mastectomy scar) but these clusters of spots are separate and have a bad prognosis
I have just read through a forum thread here between 3 or 4 ladies from 2014 and I have to say none of them are around and what they talked about in terms of their treatment was all very depressing. Chemo many rounds many types, loss of hair etc and then the 23 page thread ends...
Hi Liz, I'm sorry that you have had a rough time with bad news coming thick and fast. Your oncologist has done everything correctly to make sure she knows the full picture. I just wanted to share my experience as I had a local recurrence under my arm 14 years after my primary. Scans showed no other mets and I was treated with the full works with the intent to cure. This was followed by a repeat performance 2 years later and again 2 years after that. It was then that I was told I had a lymph node met and was stage 4. That was 7 years ago and 11 years after the local skin recurrence.
I hope that my story will give you some comfort and positivity. All the best xx
I am 51 years old and was diagnosed in May 2019 to have E+ BC grade 3, initially measured at 2cm from the ultrasound. They punch biopsied one lymph node and I was told the biopsy came back negative from cancer. I was told "early detection lumpectomy and radiotherapy only"
The follow up to the lumpectomy revealed the tumour was actually 4.2cm and node came back positive for cancer after all.
I opted to have chemo before a mastectomy and my last cycle was 5th Dec 2020. I had a Torso CT scan which revealed nothing sinister other than possible new tumours in the same breast which they took biopsies that came back as "none malignant" albeit the cells were not normal. My surgeon said she thought it was the extra margin they still needed to remove combined with post lumpectomy scar tissue which had moved the cancerous bits about.
Chemo - E/C floored me each round I was in a dark room for 9 days and nights crying in discomfort from head to toe. Weak, sick, aching its hard to describe but it was beyond any "organic illness" such as flu. Dox ironically was a breeze in comparison and I was more or less OK at home albeit very tired.
I then had a mastectomy with full auxiliary clearance and immediate reconstruction in early Feb 2020 with a extender.
Sadly the follow up revealed the tumour was 5cm and 5 lymph nodes had been infected (including the initial sentinel node) 3 with macro mets 2 with micro mets.
I went on to have 15 rounds of radiation which ended in April 2020. But my implant failed. It was already red and swollen but no liquid could be found, no pus or infection and the two rounds of antibiotics had no effect. I managed to reach the end of radiation before the implant started to fall out and so two weeks after my last radiotherapy session I went down to get the implant removed.
I thought that was the end in terms of treatment and disappointments and ugly surprises but then I was told the skin they removed from the failed implant operation had cancer cells in it around the scar/wound to one side.
And finally when I went to see the surgeon about these findings, I showed her some hard little red lumps in clusters to my sternum and underarm almost shoulder area which I noticed one or two about 5 weeks prior but assumed it was a result of radiation and/or surgery.
She told me she is worried and has seen this before in BC recurrences but not this fast. She has removed one for a biopsy and I have had a full body bone scan today with another torso CT scan I am awaiting for.
I have an appointment in two weeks to get the results from both scans and the biopsy.
What little research articles I can find on what I believe to be cutaneous metastasis tells me it usually means there is a distant tumour elsewhere and the prognosis is poor regardless.
My surgeon was hugging me and saying how sorry she was and so I know she suspects the worst.
But I managed to get out of her that if there are no secondaries in my bones or organs etc the treatment is to remove reduce or "manage" the localised cancer. She added that she has a few ladies who have reoccurring cancer which tends to want to stay local. Thats my best case scenario but I am convinced (for the first time) I am dying now and probably sooner rather than later if the growth rate of my cancer and aggressiveness is anything to go by.
I dont want to die a long slow painful death. It terrifies me. I hope they put me out of my misery with morphine rather than have me wasting away in agonising pain.
I have never had these thoughts until very recently because I always had hope. I no longer have hope.
I cannot find it in surgeons faces or in the voices of telephone support groups. No one has given me anything to cling to. I am broken.