68527members
360426posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Triple Negative Reoccurence

21 REPLIES 21
Highlighted
Member

Re: Triple Negative Reoccurence

Hi Arnie, 

 

I'm so sorry to hear you're going through this, I can't imagine how difficult it must have been to receive this news. 

 

I'm glad your GP is being supportive and helpful through this, we also have some information on support services which I hope might be useful: http://bit.ly/1XSO4Ax 

 

Take care of yourself, 

 

Becca at Breast Cancer Care. 

Highlighted
Community Champion

Re: Triple Negative Reoccurence

Arnie, I'm sorry that you are going through this and with a five year old. I can only imagine how much your head must be spinning from this  news. That news would depress anyone. It's completely unfair that while you are this sick and shook up that you have to think of your daughter's future. Unfortunately you must! I truly hope the drs are wrong!! Do you have family or friends nearby who can help you through these decisions. I think I would need to make my choices and get any legal work done quickly. Then I could put those papers in a safe place and then concentrate on my daughter and myself. I would suggest counseling for both of you.  I'm not trying to be a know it all. Just trying to state the things that need taken care of and the way I would hope to handle it.  I know I would be curled up in a ball crying too. I would need someone to shake me!! I also know that I would want to make the choices for my child. I wouldn't want the courts to dictate it. You need to decide how you want to handle it. Only you know what you're capable of. I hope your onc is wrong!! Big Hugs!!FF

Highlighted
Member

Re: Triple Negative Reoccurence

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?

Highlighted
Member

Re: Triple Negative Reoccurence

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

Highlighted
Member

Re: Triple Negative Reoccurence

I too do not understand why your oncologist would say no to antidepressants.  Mine was quite happy for my to start on them.  I wouldn't be able to get out of bed if I hadn't after my husband died in August and I was diagnosed with secondary breast cancer a short while afterwards (after never having a primary diagnosis).  Next time you meet with him or her, please ask again why you cannot start on antidepressants.

Highlighted
Community Champion

Re: Triple Negative Reoccurence

Jinxie, You are not alone in being scared! Unfortunately, we are all individuals with cancer that is as unique and individual as us. There is no crystal ball for predictions. My oncologist told me the average life expectancy was 2 years. I've been here 11 with lung mets and now one bone met. My cancer is ER + and very slow growing. It has responded well to chemo, but the first hormonal did nothing. I will say that we were all terrified in the beginning  and we all seem to settle down when we have a  plan of action (POA) and get treatment underway. We are a bunch of nervous ninny's at scan time. You will see a thread on here called scanxiety. Most of us hang out and chat on the bone met thread. There is a make believe place called cyber cafe, where there is no cancer or calories just wild imaginations. There is a private forum to join, where you can post pictures, play word games, book talk, gardening advice, etc. I'm sure more ladies will be along to welcome you. Welcome! Hugs, FF

Highlighted
Member

Re: Triple Negative Reoccurence

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!
Highlighted
Member

Re: Triple Negative Reoccurence

Hi Stresshead

i had Fec-T and paclitaxol in 2014-5 and for the recurrance am on gem/carbo. I had my 6/6 cycle yesterday with a top up of gem next week if bloods are okay. 

I am not sure why the oncologists said no to the happy pills. It may be as I am so close to finishing chemo and am due tests so keeping chemicals low but in meantime I have found doing headspace a help and after chemo am going to go to macmillan relaxation classes again, if I make the brave move back as I use to do it. 

I am interested in your experience with homeopath can you tell me more? 

I am open to anything. 

I always find diet hard as I hear and read so many different things. 

 

Thank you for your reply. 

Arnie x

Highlighted
Member

Re: Triple Negative Reoccurence

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

Highlighted
Member

Re: Triple Negative Reoccurence

Hi Tolliebelle

thank you for your kind words of encouragement earlier this year. I am now at the end if my second round of chemo and am an emotional wreck. Waiting for counselling and oncologist wants to wait before giving me antidepressents. How did you deal with it all coming to the end of your third chemo? How are you at the moment? Do you have any good advice? Your words and story helped before. 

Arnie x

Highlighted
Member

Re: Triple Negative Reoccurence

Hi Tolliebelle, thank you for yor reply. You must be so drained of it all but understand once it is away we find the strength. My surgery is mid June, a month, so not long to wait really. Then have to wait two weeks for them to decide on the next step. At the moment i am trying to be positive, and I think hearing from people, like yourself who keep on fighting is fantastic. What chemo did you have the second time? Have you had single or double mascetomy? Need to probably find out somewhere about what to expect there and get some good tips. Thank you for your encouragement. Thank you

Arnie xxxx

Highlighted
Member

Re: Triple Negative Reoccurence

Hi Arnie I have had BC 3 times since 2011 all triple negative and had to have chemo each time last one was last year finished in October. Good that bone and CT scans were clear! If you do need more chemo you will get through it! Friends used to tell me this can honestly say didn't believe them by third time lol but I did!!! When is your surgery??? Sometimes it seems easier once you get going on the treatment treadmill and the waiting is behind you I know I felt that way xxxx

Highlighted
Member

Re: Triple Negative Reoccurence

Thank you for your reply. much appreciated. Arnie

Highlighted
Member

Re: Triple Negative Reoccurence

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
Highlighted
Member

Re: Triple Negative Reoccurence

I am new to this and not sure if I am posting in the correct place. I was diagnosed with TN in 2014, had lumpectomy, chemo and radiation. Was feeling positive and like many of us getting life back in order. I found an abnormaility which led to shadows on ultra sound. Two biopsies coming back with, luckily, pre cancer cells. They had not changed but have just appeared. I was sent for my first CT and bone scan and again luckily clear. I have been booked for a mascetomy and node clearance with which they are going to check for cancer cells. I have been told they suspect they will find some so be prepared fir a second round of chemo, which I am scared as I often ended in hospital last time.

I will of course fight it as I have a 4 year old and she is my life, passion and provided the will to fight. 

I am a silent member but this time wanted to post to see if there are any people who are/were in a similar position. Or people who after the second round of treatment are with NED and can provide a little extra support and encouragement. 

Hope this is in the right place as I am a techno phobe despite being only 44. 

Arnie

Highlighted
Member

Re: Triple Negative Reoccurence

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.
Highlighted
Member

Re: Triple Negative Reoccurence

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

Highlighted
Member

Re: Triple Negative Reoccurence

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
Highlighted
Member

Re: Triple Negative Reoccurence

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

Highlighted
Member

Re: Triple Negative Reoccurence

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
Highlighted
Member

Re: Triple Negative Reoccurence

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 

Highlighted
Member

Triple Negative Reoccurence

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.