disappointing survival statistics

Hi first can i welcome you to the community none f us every thought we'd be members of but under the circumstances the best place to be.

Makes you wonder what they think will be gained by giving you so much information. I didn't even know i had triple negative breast cancer till 6 months into treatment, and that was only because i asked. My consultant was also very wary about giving stages etc because he said people go home and google and get the wrong information.

Anyway i was where you are now this time last year, i now have the all clear, so i'm a survivor and i am sure there will be a few more along soon telling you the same. 

Whatever you do don't google, i did and it frightened me to death to find out later all the information was out of date or wrong.

Read my profile it tells you what i've done, but also remember everyone is different and i know people with TNBC who didn't need a mastectomy. 

This group is quiet, seems we are a rare breed so take a look at The breast Cancer group too, there are lots more people that look in there. You will also find a  June Breast Cancer Chemotherapy Chat which is renewed every month and people who are having or who have had chemotherapy can chat in there and go through it along side people who get you.

My best advice would be take it a step at a time, you will beat this.

Hi ScriptFan,

Thank you so much for your wise words!  I have already had a successful lumpectomy five weeks ago - the tissue removed had negative margins and there were no cancer cells in the lymph node either - so I really thought I had escaped the need for chemotherapy.  At my last appointment with the consultant all was positive, except that they had suddenly discovered that instead of the tumour being mildly oestrogen receptive as the original biopsy showed it was in fact triple negative so chemotherapy was a 'possibility'.  I did look it up on this website and cancer research uk and was so glad I had because at least I had an inkling that it was more serious.  I would have preferred not to know that the chemotherapy only extended 10 year survival rates for 7 people in 100 having the treatment.  Now I have to weigh up whether I want quality of life over quantity - I'm 67 so extra years are only worth having if I going to be relatively fit and healthy. And I was expected to make up my mind without time to think it over.  This has completly destroyed my faith in the hospital and I don't see how it can be rebuilt.

Hi

I too, like , got the all clear and was TN.  I had chemo first - 4 x Docetaxel and 4 x FEC.  I had a complete pathological response - my tumour went altogether.  I still had to have s lumpectomy to remove tissue the same size and a little more than my tumour had been.  I had 8 lymph nodes removed.  I then went on and had 15 rads.

Chemo sounds scarier than it is.  It's doable and I'm glad I had it.  I had odd days where I felt off but on the whole was ok.  Good luck with your treatment.

Hi

Like you I was devastated and terrified when I was told I needed to have chemo. Especially as I have had er+ cancer in the past and managed to dodge it. 

All I can say is I'm just about to start cycle 4 out of 8 and it is nowhere near as bad as I feared. I have tired days and yes I've lost my hair, but most of the time I can carry on as 'normal'. 

I shaved my hair off as soon as I started losing it and it was the best thing for me. The one thing I could control. 

The statistics are scary but already at least 10 years out of date. A new drug they can give us is carboplatin with the taxol and this increases the chance of a full response by over 20%. There are so many new things that are being discovered all the time.

Don't get bogged down in statistics. None of us know where we fall on that chart and worrying won't change our position.

When will you start chemo and do you know what regime you'll be having?

Xx

I had my first round of chemo on the 17th July and didn't feel too bad for a few days until bad stomach acid regurgitation kicked in.  Then I had such bad hiccups that I couldn't swallow liquid at all so had to go to a & e, where I had a six minute seizure in the waiting area (first time ever) and had to be admitted to critical care for just over 24 hours.  After that they transferred me to the chemo ward where I had to stay for 9 days.  I am back home now but in a lot of pain and having to take codeine 4 times a day to ease the pain which causes me to scream rather a lot.  I also am no longer allowed to drive - my whole life has been turned upside down and curse those people who told me I might be able to carry on as normal.

Oh I’m so disappointed that things haven’t turned out as we all would have wanted, but pleased that you could come back and tell us. I’m not surprised about how you feel you have really been through the mill these last few days, but I am glad you’ve been able to express that. I always feel when things have gone wrong for me that I have to clear my head of the negative thoughts before I can become the more positive me. 

I hope things improve for you soon, did you team say anything to lift your spirits, when I was admitted to hospital after one of my treatments they reduced the dose the next time to prevent the same happening again. I do hope they sort it out for you, sending a gentle virtual hug as it sounds like you need one. 

Take care xx

Hi I don't know the size of the tumour you had removed and if there was LVI, but chemo is usual for TNBC. 7% isn't a lot for TN, so I'm guessing that the tumour was fairly small. You could look at the Predict website https://breast.predict.nhs.uk/ which is what your consultant would have used. It doesn't include LVI, so if your pathology reports says that there was none then the figures would be a bit higher.

Thanks so much - at least I know I can come here and people will have something positive to say no matter how bad I feel. xx

I'm sure I have asked you already but what is LVI?  I don't seem to be able to remember anything at the moment.

It's lympho-vascular invasion....basically if it's present it means that cancer can potentially (though might not) escape through the bloodstream without going through the lymph nodes. It invades the the vascular system then tries to invade the bloodstream. I was terrified when I learnt about it! That's how you might sometimes hear of people with clear nodes getting secondaries in other places. It should say on your pathologists report if it's been seen or not, and usually it isn't present. If it isn't present then the benefit could be slightly less, but I went with chemo with 4% difference, because that translated to 1/11 chance of death in 10 years to 1/17 chance of death in 10 years by looking at the number difference between no chemo and expected to be alive . The difference with no chemo was 9% so 9x11 = 99 (close enough to 100!) with no chemo vesus 6% difference with it so 6x17= 102 (close enough again, and much better odds).