TNBC Stage 4, Lung Mets

spencebaby

Anybody with triple negative and mets to lungs survived more than 2 years? My Mum was diagnosed in May (multiple bone mets also). Feeling a bit desperate.

Zoe-Lily

Spencebaby,

I don't have much wisdom to share on  mets , but some ladies have been kind enough to provide me with comforting words to my post on "TN metastatic cancer fear". Please check it out , there are few ladies with mets who seem to be doing well.

Please hang in there and it will eventually get better. The support group on TN forum is a life saver, I am sure more ladies will come along soon and will reply to your post.

Zoe-lily 

spencebaby

Will do. Thanks Zoe-Lily.

Suze35

Spencebaby,

I am Stage IV with liver, bone and lymph node mets.  I have not been told what my life expectancy is, and I do not ask.  The honest truth is, we just don't know.  A lot depends on how your mother responds to her first round of treatment - usually the better the response, the better the prognosis.  But even that isn't always accurate, as the first try may not work, and the second shot knocks it out of the park.

What was her treatment when she was first diagnosed, or is this your mom's initial diagnosis?  What is her treatment currently?  Is she responding well to it? 

I can think of several Stage IV TN women at the moment who are more than 2 years out and doing well.  At this point, I personally live my life in 3 month chunks, and try to enjoy each day as it comes. 

My best advice is to be there for your mother as much as you can, particularly when talking with her doctors.  Be her best advocate - ask questions, such as:

* why this treatment now (are they just throwing chemo at her or do they have a coordinated plan?),

* what are the doctor's plans if that treatment fails (have they thought that far ahead?),

* are there any clinical trials that might benefit her (studies show a good clinical trial can extend survival). 

Take notes, and come back and ask us questions - we are here for you!

spencebaby

Suze 35,

Thanks for coming back to me, I appreciate your advice. 

My Mum's first breast cancer was 20 years ago. It was ER+. She had a lumpectomy, radiotherapy and tamoxifen (5 years) and, until 2 years ago, is very fortunate not to have had any related problems. A couple of years ago she started experiencing a tingling sensation in her right hand which became painful and eventually led to loss of function. Her doctor originally put this down to a fractured elbow (the result of a fall). Then she was told that x-rays revealed severe osteoporosis. Finally, at the end of May, a CT scan showed a tumour (5.5cms) in the axillary with multiple mets to bones and lungs (largest of which was 1.8cms). It wasn't what we were expecting at all. After two biopsies (to make doubly sure), we were told by a breast cancer surgeon that the cancer was triple negative and that, at her age (72 - he actually said she was no spring chicken!!), nothing more could be done other than to treat her pelvis and legs with radiotherapy in order to control the growth of mets which would alleviate pain and reduce the risk of fracture. The axillary tumour can't be operated on because of its proximity to nerves and blood vessels and she cannot have radiotherapy in this area because it is too close to the original site of treatment. We left the hospital in a state of shock, to put it mildly.

Some good news came later when she was referred to an oncologist who, after a heart scan, considered her fit enough to have chemotherapy. Three weeks ago she completed 6 cycles of EC chemo (nasty but she got through it), prior to that she had 4 radiotherapy treatments to her bones. A CT scan after the 4th cycle confirmed that she was responding to treatment - the largest tumour on her lung had reduced by two thirds! We're hoping that the last two cycles have beaten it into submission. The radiologist took issue with the surgeon and is considering giving some radiotherapy treatment to the axillary tumour. She has a follow up appointment with the oncologist next week, her next scan will be in January. Fingers crossed.

The treatment has left her very tired, but not to the point where she doesn't have any quality of life. Her memory is really poor and she gets very confused sometimes but she is still smiling through, despite everything. She can still walk a fair distance and the nerve pain in her hand has subsided significantly. 

Mum, my Sister and I all realise that she is lucky to have made it this far. She feels guilty - we all do - when we see and hear of much younger people battling against this disease. 

spencebaby

Suze 35,

Have just read your biography and it has given me more reasons to feel guilty. Just wanted you to know that I really appreciate you taking some of your precious time to share a few words of wisdom.