Hi Patricia
Sorry you find yourself in this awful situation.
Just from my experience, once I started on my recurrence treatment it hit my neutrophils so hard that I avoided work because of the high risk of infection. I went back full time after reaching NED but stayed away from the office when I had to resume treatment again. After having much time off work - though my employers were very supportive and didn’t pressure me at all - I decided I wanted retire and have some time to be free of the worries about work and to do things I want to do. It was hard initially but I’m so glad I did it now. I figured as long as I had enough money to get by it was the best option for me.
My pension service provided me with an estimate, which helped with the decision making.
Good luck with whatever you decide to do.
X
Hiya Patricia.
Welcome . If you do decide to retire you can Claim pip which is available to all with secondaries. It’s not means tested and could make life a little easier financial for you.
A lot of ladies here like myself have it. There are a lot of threads available for info.
Hugs xx
Hi all,
Im in that weird place of being secondary/ecurence TNBC, but only in my neck area and not spread to any vitals or bones at this time. It was really scarey for a while as I only had two small raised nodes in my neck in February, when I had the FNB (fine needle biopsy) the cancer seemed to explode around my neck, I ended up with severe lymphedema and in a lot of pain as well as restricted movement to my left side. I am currently on a lot of pain meds and Im on my week break from my weekly infustions and Ive found a lot of my mobility has come back, Im hoping something is happening and now I am able to sleep more comfortable, find myself getting more angry with everything around me. Im off work at the moment and Im not sure if I want to go back.
xx
Hiya Patricia
Just wanted to send lots of good hugs and thoughts for tomorrow.
Please let us know how you get on .
Hugs xx
already posted in here oops sorry x
"Bumping this posting up for Arnie.
Good morning. I’m a newbie to this thread. I had TN breast cancer in 2013 and yesterday I got told I have a 1cm lung met and 1cm breast bone met. At the mo I live overseas, me and my family are being repatriated to UK within next two weeksso I can start treatment, So I’ve got a massive move and a cr@p diagnosis to deal with. I also have to tell me young daughter tonight, I am devastated for her as not only does she have to deal with this, but also that she has to move countries and school and leave friends. I don’t even know where we will move to yet!
i don’t know where to start with reading through all the info on this site. My mets sound small, so that’s a positive isn’t it?
Im feeling a bit lost.
xxxxx
Hiya spudgirl.
Welcome to our family.it’s always hard to take in dx of secondaries but coming back to the UK is a good move …we moan about nhs but most times the treatments are wonderful.
Once u meet your oncologist and get the treatment plan you will b able to focus.
There is loads going on here if you want to join
The private forum where we have a book club photo gallery and loads of topics running.
The busiest thread though is the one " bone mets" …always a bit of nonsense gping on there to cheer you up a bit as well.
Xxxx
Spudgirl.
How awful for you to have to do a double whammy with dx and then moving . Your daughter must be quite young and so hard for her to have to have that sort of news.
Kids do adapt and are quite resistant to life but you must also focus on your treatment plan asap when you get back to the UK.
It’s such a hard life but we women are tough cookies and cope somehow
Keep in touch with us as there is such good support and kindness here as we are all on this roller coaster. Once you know which treatment you are going to be on …there are special threads where there is always help and experience.
Hugs xxx
Spudgirl, just wanted to reiterate everything everyone has said. We are sorry you have had to join us but hope you will find this forum helpful…even if its to have a rant and a scream. We are all with you on the daughter front…we would all do anything not to put our children through this. Dont be hard an yourself and try to rest p whenever possible.Good luck with the move and let us know when you are settled and have atreatment plan. xx
I’m new to this group. Diagnosed in 2013 with TNBC. Survivor now. I do have a concern because a mamo showed a non specific lymph node and I am waiting on insurance to approve an MRI. It’s taking a while and it’s very nerve racking. I don’t know what a non specific lymph node means and I also have had a bump on the back of my neck for a while. I’m just starting to freak it and become a head case when I have always had a very positive attitude and I don’t worry about things until it’s confirmed. I just can’t shake this horrible feeling esp since I’m still within 5 years of diagnosis. Help!! lol!
Hiya Michelle and welcome
Scary time but until u get the scan etc you are in limbo really.
Please keep visiting here as you will find a wealth of experience, kindness and support.
U might like to join the private forum as we have lots going on there with gardening club and games etc.
It’s all a focus away from the real world.
Hugs xx
Hiya .just reading the daily mail today.page 20.scientists have made a break though in better treatments for triple negative bc it’s called JQ1.
Obviously just dangling a carrot above noses at monent but something maybe in pipeline as soon as it can be verified .
I’m not tn but my oncologist said that priority is to tn patients now for any possible clinical trials as obviously not so many choices but more research being done than ever for you all .
Hopefully a magic bullet is out there very soon.
Xxxxx
Hi Everyone,
I’m new to this thread! I was diagnosed with tnbc in July 2013, had 8 months of back to back treatments then and was fine for a further two years! In February of this year, I started feeling stitch type pain on my left side which was continuous ( had felt that intermittently in the same place a few weeks before diagnosis in 2013) a chest x-Ray showed a shadow in the bottom of the lung and CT showed it to be a 21mm mass! A PET scan showed that to be 28mm x 16mm and a further 4 areas ( 2 more in the same lung, one just outside and a node on the ligament between the liver and stomach). To cut a long story short I’ve been on Gem/Carbo since then and finished a few weeks ago. Mid point PET showed good response and now waiting for end of treatment scan then a break. Most of what I’ve read on tnbc with secondaries is quite bleak and in April my friend died who had the same disease as me! I really feel like I need to here some positive stories of people who have had the secondaries for quite some time and they’re being controlled please. Don’t get me wrong I’m not naive and I know what a horrible disease this can be, but just feel I need to here some positivity xx nice to find a thread of similar people xxx
Hi jill,
not sure i can be of much help but at least i can understand exactly how you feel about being triple negative. I started out in 2011 with ER+, PR+ HER2- invasive lobular cancer and after having evrything going, was diagnosed with sbc in 2014 (evetually after 5 months misdiagnosis). It ppaently then mutateed to tn (without me being told) which really shook me as i realised it wiped a lot of treatments of my plan. Since then i have pulmonary embolism, 2 pleural effusions and now also have mets in pleura/bones. I am currently on carboplatin (Onc said to try a single agent as both this and gem very toxic) but no one seems to be willing to talk about the next step. I know there are few options left for me but i just feel like its all so matter-of -fact…
I have been trying to get on to trials but no one will consider you if there are still treatments to try and i just worry that when that time comes i’ll be too ill to go on it or there wont be a suitable trial.
As i said, i’m not much help in the positivity stakes but i’m alsways here for you to rant and rave at, have a cry or just offer a cyber -hug.
Best wishes.xx
Thank you ladies, I’ve been fairly ok up to now, I think it’s waiting for the scan and with one lot of treatment coming to a end, you sort of start thinking what’s next…perhaps that’s just going to be enjoying life for a bit with some luck xx thank you your support means a lot xx
Hi ladies,
I’m very much in the same situation as you all, I’m still coming to terms with it coming back and so fast. I sometimes just want them to open me up, sod the risk and just get them out. But I know that won’t happen.
XBlannaX
I know what you mean Blanna, if only they could just do that xx I e always found if you need to rant there’s someone on forum to give support and be a sounding board too xx
Had grade 3 triple neg invasive ductal cancer diagnosed Aug 2015. Lumpectomy & sentinel node biopsy, Tfec chemotherapy and bilateral mastectomy in April 2016.
First 3monthly follow up next week on 10th August and getting nervous. My mother died aged 33yrs from metastic breast cancer (breast, brain tumour, lung cancer)
My mum got the brain tumour with no warning just started with headaches… I am already on Topiramate for headaches which have been worse since chemo finished… How will I know if it’s anything sinister? I’ve got word finding difficulties, clumsiness but I now learn they are side effects from my topiramate.
My follow up is with a breast care nurse, not surgeon or oncologist, what tests do people have done?
Petrified I will have a repeat of my mum reoccurrence