73.3K members
1.2M posts
cancel
Showing results forΒ 
Search instead forΒ 
Did you mean:Β 

so scared im a mess

10 REPLIES 10
Zomow
Member

Re: so scared im a mess

Hi Jinny, I came across your threads when googling TNBC and have joined in this forum in the hope of giving you a positive story. I was diagnosed in 2010 with TNBC aged 35. I had a 2 yr old daughter, was in the middle of a marriage break-up and halfway through a degree course, so I had a lot of stress. I was overwhelmed by information during my diagnosis and opted for chemotherapy first before surgery. My tumour was aggressive at 36mm and had infiltrated my pectoral muscle (I don't know if there was any node involvement). I had 8 cycles of chemotherapy I had 4 cycles (a cycle every 3 weeks) of EC then I had 4 cycles (every 3 weeks) of docetaxal. After only my 3rd week of starting chemo, the tumour that protruded out of my breast began to disappear so I knew the chemo was working. An ultrasound scan prior to ending my chemo demonstrated that the tumour had disappeared. Unfortunately, this meant having to have a mastectomy as the surgeons & oncologists couldn't be sure what area the tumour had affected & wanted to make sure no cells were left. At the time I was devastated as I wanted to preserve my breast, but now I'm glad it's all gone. I'm 4.5 years down the line and I'm still here! I look back on my cancer as being an obstacle and an experience in life. Through it, I have developed a great social life & a great network of friends & now have a great job in mammography. I hope my story gives yourself & others a little bit of hope. Z x
jinny2611
Member

Re: so scared im a mess

Thank you so much for taking the time to reply x

Lulu34
Member

Re: so scared im a mess

Hiya jinny

Nobody has a survival of 50:50. Maybe 50:50 to make it 5 years or 10 years or however many figures they are collecting stats for now, but the only sure thing in life is that we all will die..... But hopefully not for many years yet.

I actually have terminal cancer so I'm perhaps not the best placed person to offer support.....

You asked how you deal with those stats.... Well you just have to remember we are all different with different life experiences, diets, fitness levels, lifestyles, etc which all contribute to how we deal with things but also how our bodies will react to treatment etc.

For example my very close friend was diagnosed with grade 3 TNBC in 2008, she had 12/20 positive nodes..... She has had no recurrence, no spread, no new primaries etc.... Meanwhile I was diagnosed in 2006 with a hormone positive, grade 1, node neg BC..... Then I got a new primary 3 years later... This was was also node neg, under 2 cm, but was grade 3 and TN.... 2 years further down the line I had a recurrence of the TN tumour in my interpectoral lymph nodes and muscle but my axillary nodes continued to be negative.

2 years later I was diagnosed lung mets.... Which didn't respond to treatment very well.... 8 months later I developed brain mets... Apparently 3 months later "in hindsight" I was diagnosed with liver mets and then last month with bone mets.... So have the full works now.

So basically what I'm saying is that if you look at me and my friend and compare our history you would be expecting her statistically speaking to be the one with the terminal cancer.

As some of the girls have also said the stats can be quite out of date.... And they look at 5 or 10 years in the past and not 5 or 10 years in the future.

There are new developments all the time and much research is being done into TNBC a as its a fairly new phenomenon although it has been around for years they didn't used to test for all the protiens they do now.... And chances are they will be able to narrow the cancers down even more as they make more discoveries...... I know that there's quite a lot of interest in immunotherapy and tumour profiling.

I set up an FB group for ladies with TNBC both primaries and secondaries are welcome to join it.... Some people find it makes them more worried whereas some people find knowing the facts and the research available makes it easier to deal with.

Now my situation is quite different to other ladies as most people don't go bish, bash, bosh with the mets and loads of ladies stay stable for years on end.

So I hope I haven't made you more scared as I just deal with my diagnosis/prognosis day by day.... I have a great network of friends.... My family are so supportive.... I've was at the birth of my grandson last month and even cut the cord.... Something I certainly didn't think I would even be here for never mind see it first hand!

So once you have gotten over the shock and the treatment being over.... (Google Dr Peter Harvey after the treatment is over then what? Which is a great article regardless if you TN or not.) then you need to start living your life.... As another of my friends always say get busy living don't get busy dying.

Sorry for the massive post.
Love and hugs Lulu xxx
linros
Member

Re: so scared im a mess

Hi Ladies

 

Thankyou for your msgs....In the early days I was always on this site, I dont know whether you can get my old posts up....although I had fantastic support through people on here, I also found some very scary posts aswell...I used to trawl through looking for similary diagnosis and came across many posts with people saying how releaved they were to not have any lymph  nodes involved and how glad they were that they could have hormone treatment, I know they didnt mean to scare people, but I found it so scary to think I had been so unlucky!

 

I know many ladies that are going strong with node poss tnb....why shouldnt that be the case with you too.

 

Jinny, 

dont hesitate to private msg me anytime, i dont come here much, but will always get a email telling me ive had a msg.

 

And remember, stop doing those statistic calculations and going on random sites they will just stress you out and dont relate to you as a individual. X

 

Julie xx

Brewster
Member

Re: so scared im a mess

Thanks for sharing Linros. Amazing to see positive stories with TNBC when the Internet fills you with doom and gloom. I am not reading anymore now on Internet and just going to focus on coping with the chemo ahead.

So great you are doing so well, 8 years woop woop πŸ˜„πŸ˜„πŸ˜„
Downbutnotout
Member

Re: so scared im a mess

linros - how wonderful your response to the chemo. I love to hear good news stories. Thank you.

 

Jinny - you are an individual, statistics are based on old data. Hang in there; as linros says, you need time to come to terms with your diagnosis and you'll start to feel better once you're underway with treatment to zap the little blighters.

 

Best wishes.

 

Flo

x

jinny2611
Member

Re: so scared im a mess

Thank you and u described it so well exactly how im feeling crying my heart out behind close doors and to be honest i felt lik that today talking with oncoligist nothing positive at all apart from saying think of the cup half full i asked if she sees many with my diagnose doing well her answer was a few i hold on to every word she says thinking back to anything positive its like a bad dream i wish i could wake up from thank you for taking the time to reply i appreciate it so much your my insparation xx

linros
Member

Re: so scared im a mess

HI Jinny

 

I know youv sent me a private message but thought I would  reply hear so others can hopefully feel a little more possitive about being triple negative.

 

Im sorry to hear how your feeling, I know I have been in that very very scary place to, as ive said before I had a awful prognosis when I was diagnosed in June 2006...over 8 years ago. I was triple negative with all of my lymph nodes possitive 2 tumours and also had spread in nodes above my clavicle, my appointments with 

My oncologist were always doom and gloom and I couldnt see a future at all, I used to take myself off to the bathroom and cry my heart out, thinking of my 2 daughters coming to terms with me not being here, I was terrified, as you are.

 

The only thing that makes you move on is time, thats all I can suggest really and I know thats not much help, but with each day that goes by it starts to get a little easier, its very small steps but in time you will not think about it every minute of the day.

 

I sometimes look back and think about certain doctors a saw that told me basically id be lucky not to have secondarys, and it makes me angry that they give me this information and ruined the early years after my treatment had ended, as I kept thinking about all the negative things they had said, and I wasted them years worrying... they dont know whats going to happen..and thats what they should say !.

 

You havnt been diagnosed with secondarys and you could very well be ok, and in 8 years sending a post like this one, to someone else who is as scared as you....

 

Triple negative can reapond amazingly to chemotherapy, I know a few ladies still going years and years down the line thats hav had tnb with poss lymph nodes.

 

Try not to go on loads of websites , the info is sometimes outdated and scary as hell... hope ive helped a little....small steps forward, youl get there xxxx

 

 

 

 

 

 

 

jinny2611
Member

Re: so scared im a mess

She said it cos im trip neg and nodes involved i dont know how im going to focus on life keep crying when look at kids x
chascat
Member

Re: so scared im a mess

Hi Jinny, I'm so sorry you're in this awful place. I remember asking my oncologist the statistics and she there was no point going into it as it didn't matter what they came out as,you either fell into the good group or the bad and statistics can't tell us which one that will be. I took a lot of comfort from that because she's right. I'm nearly 3 years from diagnosis now and I don't pay attention to statistics anymore, not like I did when I was first diagnosed, you'll get to that point too. In the meantime, give the help desk a ring,they saved my sanity in the early days and try and keep your chin up, it does get better, I promise. Take care CC

jinny2611
Member

so scared im a mess

just had planning done oncolgist was honest said 50 50 my survival how can i live knownin this im a mess