Just had to share with you all.
I was diagnosed with grade 3 triple negatice breast cancer on Friday 13th June 2008.
I had chemo and radio, and now I am FIVE years on. It is amazing, and I just want any other triple negative ladies to know that it can be done.
I don’t come onto this site very often at all now, but I do know that during my tough days, and months this site has been an amazing support.
I hope this gives encouragement to those ladies out there going through tough times.
Thanks for sharing. It helps a lot to know there can be a future! I have just finished chemo and waiting to start rads and it is really starting to hit me now that others are beginning their hormone therapies that there is nothing to protect me in same way. So BIG thank you CrystalT for proving we can get through it.
Tup
Thanks for sharing your great news. I’ll be 2 years on from diagnosis in September. The fear really kicks in once treatment finishes and there’s no backup. Can’t wait to get to 5 years.
From another fellow TN.
X
Hi girls,
just to add to positive stories, I was diagnosed with stage three triple neg in February 2007! I was warned that it was a very poor prognosis, and even refused reconstruction several times, on account of this! Thankfully, a new female surgeon joined the team. I now have six years under my belt, and have reconstruction to boot!
I have to admit that I had never dreamt I would be writing this in 2013. I used to listen to news of the Olympics that were due to happen in 2012 and think that I would probably not be here to see them. I feel so thankful, I can’t tell you. Keep going, ladies. I wish you all the best. I don’t come on here very often now, but forum used to be a real lifeline in the early, scary days.
Bedt wishes,
jax
Thank you for letting us share in this good news.
I am TN and one year on from diagnosis… still not feeling fully healed from the effects of WLE, chemo and rads yet, but getting better day by day.
I look forward to celebrating my 5 year date
May I ask a question please.
I have had WLE and am half way through 6 FEC, radiation to follow. I was told I am ‘weakly positive’ and would not be having hormone treatment. Does that mean I am triple negative ?
The doctors told me the surgery was a success, I had a 2cm lump, grade 3 and found very early on routine screening, and the follow treatment was ‘an insurance policy/belt and braces’ exercise. I am getting a bit confused with it all.
Hi March13,
I had WLE, 4 FEC followed by 3 Docetaxel and Carboplatin. Then 20 Rads. Mine was a 2cm tumour of grade 3 too, but it had not spread into the outer tissues or lymphs (though 2 sentinal nodes were removed).
I was told mine was TN right from the start, and it was a fast growing blighter!
I would suggest you ask your Oncologist or Breast Cancer nurse to explain it to you some more - they really don’t mind you asking for more info - as it sounds like there was a slight positive reading from your tumour, but maybe not enough to put you through the treatments after chemo if the result is going to be so slight.
It sounds like they feel the chemo and rads will be enough to zap it away Chemo is powerful stuff, and the Rads just finish things off!
My treatment was also a ‘belt and braces’ exercise, as they say.
Good luck with it all, and don’t apologise for getting confused… what with all we suddenly have to learn, pills and treatments to schedule, along with chemo-brain… it is amazing how we function at all!
My onc told me that chemo plus rads put us TN ladies ladies who didn’t have any infected nodes back on a level playing field as the hormone positive ladies with regards to prognosis. We may not have the benefit of 5-10 years of hormone tablets but neither do we have to put up with their side effects. Personally I’d much rather take my chances than suffer another load of side effects. He told me to finish rads and then go and get on with my life life and not to worry about recurrence as stress and worry are the worst things for your health
X Yvonne
Good to read these stories ladies… I was diagnosed with grade 3 tnbc in may2009 and had wle, chemo and rads, i got a recurrence in aug 2011 and had a wle, chemo and rads… All A-OK at the mo.
i previously had hormone pos bc in april 2006 so unfortunately do still have to do the hormone tablets although havent found them too bad.
march in answer to your question if they arent planning to give you hormones they are treating you as TNBC.
the hormone level is a score out of 8 and 0 or 2 normally is classed as negative as less than 1% of the cells biopsied have hormone receptors… In some units 3 or even 4 is treated as negative although really are oestrogen low rather than negative and pptentially could benefit from hormones but most ons will base treatment on their previous clinical experience as there isnt actually much research in ths area… You may feel that you want to give the anti hormone treatment a try so its good to know what the actual score is as 0 is a true tnbc… However a consultant pathologist at my unit said if you recheck every er score under 5 they will normally all turn out to be negative.
i have a friend who had tnbc but is also on tamoxifen as shes a brca gene carrier and takes as a prevention of a new primary breast cancer which gene carriers are more prone to. I have a brca2 mutation.
Hi ladies, I am so happy to have found you was beginning to think I was the only one affected with this. Two days ago my onc told me that this cancer was aggressive and had high chance of returning after treatment and I have been in meltdown ever since. I am expecting to be around for a couple of years and really wanted to connect with people who were similar diagnosed. You all seem to have done really well and I just hope I can do the same. xx
Kaz,
It is scary when people talk about the increase in recurrence early on but we do get to balance it with less recurrence later on.
A lot of women with Breast Cancer are Triple Negative, 15 to 20% which is a lot of women, and we don’t all die of it. My surgeon did not like to talk about it as TN and said it was good I didn’t need herceptin or hormone therapy, and also that he felt there were different types within TN to be discovered. Perhaps a bit of positive spin but I was fed up with the negative spin!
After mastectomy and axillary clearance and FEC6 for Stage 1 Grade 3 I have just passed my 3 year anni with no recurrence and hope to carry on this way.
Wave, Lulu, haven’t seen you for a bit
Lavender
xx
It is so good to hear all this positive news.
I am one year on, and it seems quite a lonely time returning to ‘normality’ after so much support and regular hospital appointments. You can’t help your mind wandering and wondering…
These messages leave me feeling far more positive about getting on with life, and I am sure they give us all a lift of spirits.
Thanks everyone, for sharing the positive part of being TN.
Thanks everyone I am trying to be positive but at the moment my head is just filled with “its coming back after treatment”. I know i need to block this out and not be so negative and stop moping in bed. x
kaz1961, be kinder to yourself. This is a big issue in your life so it is no wonder it has hit you hard.
I don’t know how far along you are with treatments, but I am still feeling the effects of chemo and rads, and I completed rads back in March!
Everyone heals at their own rate, and it isn’t just physical healing, but the mental stuff too. We are pretty much left to our own devices to sort out our life after all the treatments, and there are other issues that make it difficult too, such as financial problems, family concerns,etc.
It isn’t a simple case of pick yourself up and get on with living, so much as do what you can each day to make life more fun, and slowly things will improve with your/our/my outlook and energy, so that life finds a new ‘normal’.
We cannot change what might yet happen, but we can be positive about what is NOW, and do what we can to recover after this energy sapping treatment.
I too worry about the cancer returning.
I used to worry about getting cancer in the first place, but now I have dealt with that issue and I am fortunate to still be here. The experience has changed the way I look at things.
You are doing great but your body and spirit is tired. Allow yourself plenty of rest, and plan lots of things to look forward to.
If you can get up out of bed and go for a short walk, or do something slightly energising, you will feel so much brighter to face the day, and gain control of your life again.