I have been diagnosed with Triple Negative secondary breast cancer. It has spread to my lymph nodes in neck and arm and is inoperable. I have 11 chemos scheduled for this year. It has also spread to my breast bone and lining of the lung. I was just a few months away from my 5 year remission. I had been having months of treatment for lymphoedema, cording etc. Totally gutted and petrified. It has all happened so quickly I can hardly take it in.
Hi KellyMC,
I am really sorry to hear you are going through this difficult time and I am sure some of our users will be offering their advice and support soon.
I have moved your post to the ‘Living with secondary breast cancer’ board as this has many active users.
In the meantime please do call our support line at 0808 800 6000 who will be able to talk to you about how you are feeling, treatment and offer you a friendly ear.
Best wishes,
Lizzy
Digital Community Assistant
Hi kellymv
I think I was in exactly the same position as you… First diagnosed in 2010, reoccurrence in my neck in sept 2014… Chemo and radiation followed… Then I had skin mets on my reconstruction… Had been on chem/carb and now eribulin (drug fund)… Just had a scan, some reduction, others stable…
It’s a terrible time when you get secondary diagnosis, but does get easier, and you carry on with a new normal. Take all the help you can get and take special care of yourself!!
Big hugs…
Wolife xx
Hi KellyMc
I’m so sorry to hear of your recurrence. It must be particularly hard to cope with as you were approaching that 5 year milestone. I remember how gut wrenching it was when I find out about my recurrence and then finding out it had spread and was incurable. I’m also TN and have it in my lymph nodes and skin.
As Wolfie says, it does get a bit easier in time. Once you get started on treatment it gives you a different focus. What chemo will you be having?
Best wishes.
DBNO
X
Hello Kelly and all. I have just been diagnosed with secondary tn breast cancer in neck armpit and right lung. Gutted. I am going to have treatment chemo of carboplatin. Inoperable. What treatment dud you have xx good luck I am still trying to get my head around it and wonder how long I have left xx
Hi Sarahmummy
I’m so sorry you’ve had a secondary diagnosis. I had Carboplatin with Gemcitabine, though I missed half of the Gemcitabines and had a reduced dose after the first cycle because of low neutrophils. Despite that, I got to NED for a few months and I found it a much kinder chemo than FEC-T. I was able to keep a good level of fitness, felt very well and had few side effects. The platinum based treatments (Carboplatin is one) have been shown to be more effective against TN.
Best of luck with everything. Ask any questions and we’re all here to try to help.
X
Hi, I’ve just been diagnosed with TN secondaries. I was first diagnosed in April 2014. Had chemo first, then double mastectomy and lymph clearance (hormone receptive cancer in 2nd breast) in Nov 2014 followed by radium which finished in April 2015. So you’ll see it has been a very quick reoccurrence. I was stage 3 at original diagnosis. My reoccurrence has not reached any organs yet but is again in lymph nodes behind my collar bone and also behind my breast bone. Am gutted and worried if this is a death sentence.
Hello Arnie
Welcome to our little family of support. I have brought up the other thread if triple negatives for you as you might like to trawl through and find some info.
I don’t have tn but there are a lot of ladies here that do and I’m sure they will.post. it’s the weekend and maybe a little quiet here as a lot of ladies will be bungee jumping and absailing down Blackpool tower!!! Lol. ( sorry but we do like to have a bit of humour here)
Hugs xxx
Hello Arnie,
Glad to see your surgery apparently went well. When you say you are at the end of your second round of chemo do you mean your second type of chemo or are you on your first one?
We all know the ‘emotional wreck’ one …as you have probably realised this disease is one hell of a roller coaster. I dont understand why your oncologist is telling you to hold off on the anti depressants. i didnt want to have any but in the end my psychologist and homeopathist both suggested i shold have them and my onc had no objections. You should have anything that will help get you through this.
We all deal with the stress in different ways…distraction techniques, meditation, relaxtion…try anything available to you and please let us know how you get on. xx
Hi Ladies,
Just returned from CT results to digest secondaries in both lungs - and loads of them! All from TNBC only a year ago! Seeing Oncologist tomorrow at 11am to discuss treatment plan. Any advice what to ask for and any idea what kind of life expectancy? Pretty scared right now - bottom has fallen out of my world!
Jinxie, sorry you have had to join us but welcome. We are all familiar with the bottom dropping out of our world so know exactly how you are feeling.Even more scary for us TN ladies!! The uncertainty of it all is very difficult and the ‘how long have i got left’ qestion is never very far away from your mind. I have never asked for a prognosis and just try to take heart from the ladies on here who have had secondaries for several years. Please feel free to rant rave and cry on here as often as you like…we all understand.
Arnie, i was put in touch with my homeopathist via the breast care unit. I also see a therapist for reflexology, reiki, aromatherapy etc.
They are both very good listeners which helps as you can tell them things you probably wouldnt share with your family. I have had several homeopathic ‘remedies’ to help with everything from tearfulness to energy to organs etc, They include pulsatilla,carcinosin, caeanothus & berberis, ignatia…cant remember whats for what or even if they do any good but they are doing no harm (as far as i’m aware) and at least i fel like i am doing something positive by trying them. She tells me what i need and then i order it from a company called Helios.May be worth asking your BCN if there is any such servicewhere you are. xx
Hi all, I have been quiet as was dealing with my second reoccurance triple negative. Got through my second round of chemo which ended in Dec. Gem/Carbo. No further treatment just routine checks. I noticed two lumps appear on my mascetomy. Ultrasound was normal but my surgeon did a biopsy. First biopsy was okay but he was not happy with sample. Second biopsy the news was it has come back and is aggressive. Being sent for CT and bone scan. I am in a total mess. GP good as I am now on anti depressents and have diazepan for anxiety. Have curled up in a ball, can’t eat and cry everytime I look at my 5 year old daughter. Scared as it came back just 5 months. Dreading results. Had counselling and during this she was mentioning me facing my death and making plans which has thrown me even deeper into negativity.
Anyone who can support?