Thanks Val the night shift theory also seems to be linked to hormone positive bc. Theory being that light at night suppresses the normal nocturnal production of melatonin by the pineal gland, which in turn might increase estrogen levels in the body.
Anne x
Hi Little H, thanks for the congrats and the corny joke!!!
Reading about this caused it that caused it, well to be honest if you listend to all the supposed triggers you would eat nothing, go nowhere and have no life. I do belive it’s environmental personally, but have stopped beating myself up that I ‘gave’ it to myself by doing x, y or z now. I have it, it’s a sh***y straw but now I have to enjoy life while I still can and not get hung up on the why is how I feel. I do appreciate not everyone does though and sometimes it’s easier to blame something as an outlet for the natural anger at being in this place at all.
Nikki
Dx Jan 08, triple neg with tumour size of duck egg, no lymph nodes affected (they took out 20) and chest wall clear. Bilateral mastectomy Feb 08 (just wanted rid of both breasts in case of recurrence) and 6 chemo sessions from April 08. Saw onc cons in Sept and no further check up till Sept 09. Asked to see surgeon before then and have appointment for April. Feeling great now and beginning to get back to walking after being exhausted for ages. I am very overweight and have to lose at least two stones to go on waiting list for reconstruction. This is going to be hard but will defo try low fat diet (again) and hope it comes off this time.
Thank goodness for this site. I have just plucked up courage to go on to find out more about triple neg as all I read early on was so depressing. Onward and upward. Keep up the good work.
Hi everyone.
I was diagnosed in later January with a Stage 3, triple negative tumour. I had a lumpectomy and full axillary clearance in late February. The consultant told me there was no node involvement and that the margins of the lump was good.
I am now waiting to see the oncologist to discuss further treatment, radiotherapy seems to be a given but there will be a discussion on the statistical odds on chemotherapy extending my survival for 10 years. Apparently the chemo is optional and it will be up to me to decide whether to have it or not. It appears that the odds can be as low as 2%.
I have made some changes to my diet and lifestyle but would like some thoughts from any of you out there.
I’m confused over being given the option for chemo. Like all of us I want the best possible chance for survival!
Thanks,
Liz
Hi everyone,
I was diagnosed the day after my 36th birthday with grade 3 IDC. After the lumpectomy and node biopsy the results were a 16mm tumour with no node involvement. Triple negative, stage 1.
I was told I should have chemo and rads, but I decided to opt for not having chemo.
It’s a long story and I have posted previously about this, but I just don’t agree with chemo unless it’s totally necessary.
I don’t wish to put anyone off who is having it or who is thinking about it, but I worked for the pharmaceuticals for 10 years and I know a lot of what they don’t tell you!
Don’t get me wrong, I’m not saying it doesn’t work, I just think that personally, the percentage given to me of the benefit of having it, just didn’t weigh up against the cons. If my nodes had been involved then I think I would have had to have a rethink.
I think it’s difficult as we all have that deep ingrained thing that chemo is what you have if you have cancer, but especially with triple negative there isn’t much else that they can throw at it, but again all the information that they can give you is statistical.
I guess no one knows as to whether they have made the right decision and it all seems a bit of a gamble that we all hope will work whatever our decision.
I must admit I had a lot of negative, almost bullying tactics from my onc when I said I didn’t want to have chemo. I feel that although they feel that they are trying to give us the best options, I think that it is unfair of them not to respect my opinion and not helpful.
Unfortunately this is one of those situations that you hope you will never have to be in, but when you are, no one can make that decision for you, and you have to go with what feels right to you I guess.
liz i too was given the option of having the chemo as it only offered me an increase of 3.3%. i will be having my third of six dose next wed. i really didnt want to have it and have had a hard time after each dose but as the chances of recurrance are so high in the first 2 to 3 years i wanted to know that i had done my best to fight it. like julie says, it is personal choice but my husband and kids wanted me to have it too. what would i say if i didnt have the chemo and it came back. it would feel like i had let them down by not doing everything i could. i just couldnt do that to them. my onc wouldnt say either way what i should do.
just follow your heart.
take care
martina
Like martina I based my decision to have chemo on the high risk of recurrence in first 3 years.I went into it aware of the chance of chemo/rads related cancers in the future and of permanent damage from the chemo itself.I have peripheral neuropathy and no eyebrows 2 years after finishing.I had awful side effects from taxotere but I would do it all again.For me it would be pointless to wait for a recurrence before accepting chemo.I wanted to give myself what I believed to be the best possible chance of coming in the right side of the 10year survival stats.If the cancer doesnt come back I will never know if that is down to the chemo or not and if it does I will know that I did what I could.I am now 65 and with all its ups and downs I love my little life.Good luck to all of you.
Valxx
Hi All
Diganosed end January 2008, I decided to have chemo (TAC) first before any other treatment and prior to being diagnosed triple negative, all I knew was I had a very large (6.5cm) tumour and there was definite node involvement. I just wanted to zap anything that was floating in my system. When I found out I was triple neg, I in my ignorance, didn’t realise what it was until I researched it, then I was glad I had opted for chemo first. I decided on a bilateral mastectomy with axillary clearance five nodes with surround tissue affected out of 19. (I’d had a lumpectomy for DCIS in my other breast in 2004 with no other treatment.) I was told the chemo had completely destroyed the tumour in my breast, it had disappeard but it was still very much alive in the nodes and surrounding tissue. When I queried this with my Onc he said he didn’t know why the chmo had killed one place and not the other. Then I had radio in September. I know I have done everything I can to stop it recurring. I am drinking Japanese green tea, taking vitamin D3 eating blueberries (God aren’t they a price now) and almonds. I am having some liver problems at the moment and am waitng for an ultrasound, my GP is almost certain I have gallstones, I am praying he is right. I am hoping I don’t turn into a hypochondriac worrying about every little ache and pain but at the moment it is very difficult to distance myself from the cancer. Perhaps as time goes on it will get easier.
God bless
Jennie
hi there
My name is Gail and im a 45 yr oldmother of a 10yr old boy. I was diagnosed with tnbc in july last year. I have had a lumpectomy and node clearance. They took 9 nodes and 4 were positive. Good clear margin obtained thankfully. I have just started my rads and have 23 sessions still to go. Its good that there is finally a thread for tnbc. Like others i thought not having to take the hormones was a good thing until i started reading into tnbc. I actually had to make an apt with my oncologist as had never been told this is what i had and it felt a bit like having my diagnosis all over again. She really pulled the rug out from under my feet going on about high risk poorer prognosis etc and have been on such a downer for the last coiuple of weeks. I want to be positive but its very hard and im finding it very difficult to get my head round it all. Im hoping that this web site and the inspiration from those of you in the same boat as me will help clear my head and get me on the positive route again. i look forward to hearing from you all.
Gail xxx
Hi Gail
It sounds like you’re feeling pretty down at the moment. It might help to talk about how you are feeling to one of the BCC trained members of staff from the helpline. Here you will be offered a ‘listening ear’ and can share your worries and concerns with someone who either has experience of breast cancer, or is a breast care nurse.
The number to call is 0808 800 6000 and the lines are open Monday to Friday 9am to 5pm and Saturday 10am to 2pm.
I hope this helps.
Kind regards
Sam (BCC Facilitator)
Hi Gail
I know exactly what you mean. I think that when most of us were diagnosed the words ‘triple negative’ were not used and we found out for ourselves what exactly that meant. Like you I was devestated when I first googled tn and went through a worse time than when originally diagnosed, also hiding my upset from family as no point in worrying them more.
Thankfully I am now feeling as positive as I was before and getting on with my life. Like you I have just started rads and am so pleased to be finished chemo. I suppose I just keep focusing on the positive - I feel good, summer’s on it’s way, my hair’s growing back, daughter’s birthday next week etc. I’m not going to let worrying get in the way of living.
None of us know what is around the corner and life should be enjoyed to the full. I do hope you are feeling better and get back to your positive self soon.
Anne xx
hi there
Just want to say im feeling a bit more positive this week than the way i felt last week when posting my comments. I have had a good week and with good friends family and work colleagues around me i will get through it and start to move on. Many thanks for the kind words and encouragement.
love
Gail xxxx
hi all
just on a positive note. i met with a woman three weeks ago who was diagnosed with TN 10 years ago, when it wasnt really talked about. she had 4 doses of chemo, she cant remember which and radiotheraphy. it is now 10 years since her dx and she is all clear of the cancer, she also has a 4 year old daughter which wasnt planned. she look well and healthy and she went through this when we didnt have thses forums for help. she is 36 now ans the picture of health. meeting her done a lot for my positiviy. it was really great to meet someone who beat it. it gives us all hope.
martina
Hi Martina,
Thanks for that,had chemo yesterday and feeling rough today so it was just the boost I needed,
Love Helen x
Hi all
Finished rads yesterday and should be pleased but it feels strange that that is it as far as treatment goes and I feel as if I am hanging in mid air. Thanks Martina tt is so good to hear of someone coming through this. Pleased to hear you back on track Gail and have the support of friends and family.
All the best Anne xx
Hi Everyone
I am new to this site but felt I would like to sign in on this thread as it has just been confirmed that I am triple negative.
I was diagnosed in March with IDC 6cm, Grade 3. Had a left mastectomy and SNB which was clear (first bit of good news). I started chemo yesterday and am having 3xFEC and 3xTAX before radiotherapy.
To be honest, I was pretty sure I had cancer as soon as I found the lump (I am 61)but the TN came as a complete shock. Having read (yes, probably too much) about it on the internet and the increased risks, poor prognosis etc. I have had trouble coming to terms with that bit of the diagnosis. I am so grateful to have found somewhere where I can read messages from people who are obviously living positively with and surviving this special condition.
Thank you so much for providing me with the encouragement that I too can cope with this disease.
AJ
Hi all,
I too have just found this thread and like many of you was not told by my consultant that my cancer was triple neg but had to work it out for myself which I did from these forums and it was a bit of a shock. It was 3 weeks ago today that I went to my doctor with a lump I had discovered two days earlier and with a letter which had arrived that morning recalling me for further tests following the results of a routine mammogram the week before (I’m 54 so am now in the system). A biopsy showed grade 3 cancer, tripele negative thought these words wern’t used and I just thought that it sounded good being negative and I wouldn’t have to take the hormone treatment! I had a wle and removal of 5 nodes last Thursday and am still waiting for my results so am in limbo somewhat not knowing if it has entered my lymph system, what size lump was removed and if clear margins were achieved. Maybe tomorrow I might hear something. It would seem that the medics have their reasons for not describing our cancer as triple negative but I would love to know what they are and will ask my consultant at my next meeting.
I find the discussions regarding to chemo or not to chemo interesting as I imagine I will have to face this too.
I feel I’ve rambled somewhat but am pleased to find all of your folk as a resource…sorry that we’re all here of course.
Lee xx
Hello all, I just wanted to add my Mums experience. She too was told she was negative to the hormone tests and like me assumed this was a good thing. The words “triple negative” were never used. I now wonder if she had had this information whether she might have opted for chemo first, or to have the mx and full clearance at the same time (which she now has to go back to have). She has very much wanted to have the maximum treatment and she had a big lump so I think that even with the risk of lymphodema, and without being sure of whether the lymph nodes were invoved (turned out to be 1/8) she might have gone for it. On the other hand had she known she might not be feeling a positive as she is (dont think she has realised what 3-ive means). Anyway I supposed looking backwards is not helpful.
Wishing you all the most positive outcomes,
NLx
Hi everyone just back from rads planning and started to read these posts. I honestly thought i must have been told i was triple negative and given relevant info and that I hadn’t taken it in. However like a lot of you people I was not I had to research this for myself. I did not do this untill about three weeks ago when I had finished chemo.Prior to this I had my head in the clouds thinking cancer cut out! affected nodes removed! chemo finished!just rads to go! then Bobs your uncle im well again.Spoke to onc today who finally told me how bad my cancer could be and offered me counselling.I feel like a bubble has been burst and Im so down. I can only think negative thoughts at present. i don’t know if I would feel any better had I been given info at diagnosis. thanks for letting me ramble dont feel able at present to burden loved ones with this.
Hi Kittyw
I totally know what you mean about not burdening loved ones - I still haven’t mentioned tn to mine as no point in worrying them more.
Like you I went through a downer when I first found out about tn but now feel as positive as I did before. There is no good bc and tn does not necessarily have a worse prognosis. Some of the women on the site have so much knowledge and if you read their posts it will hearten you. JaneRA put a good post on recently exploding the myth of tn being so much worse than other kinds of bc, in fact it has less chance of recurrance after 5 years than others. I’m sure some of the other women will post the stats to support you soon.
I finished my rads 6 weeks ago and am feeling great. None of us know what’s around the corner but there is no way I’m going to let this bloody disease get in the way of me living my life. I do hope you are feeling better soon and celebrate finished your chemo and being at the last stage of your treatment. Keep posting we all know how you feel.
Anne xx