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Can we have a triple negative discussion thread on forum?

31 REPLIES 31
FizBix
Member

Re: Can we have a triple negative discussion thread on forum?

hi everyone - I am also a member of this club! - love FB xx

lyndu
Member

Re: Can we have a triple negative discussion thread on forum?

FWIW, there is currently an "ask the experts" specifically on triple negative on the American breastcancer.org site

Lyn

josyemarie
Member

Re: Can we have a triple negative discussion thread on forum?

I was pretty fit until the Taxol(had 4xFEC,4xTaxol)but for about 2yrs afterwards I had no end of joint problems and aches and pains.They did go eventually and I'm now very much my old self apart from my poor old feet- arthritis and peripheral neuropathy.I tend to get around it by wearing bigger shoes!

horace
Member

Re: Can we have a triple negative discussion thread on forum?

Taxotere certainly screwed up my fitness levels,probably permanently but I'm glad I had it.I had 4xFEC and 4xTaxotere followed by 15rads.3N 2cm Grade2 no node involvement WLE Oct 2006 finised rads a year ago today[anniversary].So many aches and pains etc but still hopeful,worst bit is peripheral neuropathy.Good luck to all 3Ns.bc in my family but +++ except for only long term survivor who was[is]3N and going strong after 6+years.others,an aunt and a cousin,sadly died.

jaxw
Member

Re: Can we have a triple negative discussion thread on forum?

Hi Katie and Anita,
Good to hear from you. Like you I prefer this site to the American ones, but Thanks Jane for giving details of the other sites. It was interesting to visit them. Hopefully we can continue this dicussion tread on BCC site and maybe eventually get our own discussion site!!
I had the same treatment as you guys, FEC and Tax, followed by 25 rads. As I mentioned earlier, my mum died of BC five years ago, but it appears that our cancers were not related, just bad luck, but it is difficult for my girls to grasp this lottery, and understandably they are quite concerned for their own health, as well as being passionately worried about mine. It is difficult for them with young babies, and lots of hormones flying around, so I prefer to share most morbid thoughts with the two men in my life, husband and son, who are'nt quite so prone to floods of tears!!
Not that tears aren't a good thing, but you know what I mean. If I have down times I hate to worry my girls with unfounded niggles, but sometimes you have to share those fears with someone.
Having severe problems with back pain, due to vertebrae degeneration, and on loads of morphine, but no real control of pain. I never had problems with my bones until all this. I don't think it is just natural wear and tear, but I am sure that it is linked to Taxotere. Anyone else feel the same? Apart from the cancer, I was fit as a fiddle before the treament, with no hint of osteoporosis, arthritis etc, but now I am unable to sit, or walk without pain. My bike is gathering dust, and I was supposed to be doing the Ribbon Walk this Saturday. I'm gutted!

AnitaC
Member

Re: Can we have a triple negative discussion thread on forum?

Hi Katie

I was diagnosed aged 49 in Jan 2007, 35mm Grade 3 invasive ductal 6/11 nodes affected. Had mastectomy, LD recon, 3 x FEC, 3 x Taxotere, 30 rads. No breast cancer known in the family.

I had a hysterectomy in 2004, removing one ovary, and had just started getting menopausal symptoms before diagnosis.

I'm now 51 and feel quite well and back at work. I feel a bit limited physically with my recon boob - got to have corrective surgery and implant changed at the end of the year as rads has made my implant harden.

Take care
Anita

Katie61
Member

Re: Can we have a triple negative discussion thread on forum?

Hi fellow 3Ns,
It is good to talk to people in the same position. I do go on an American site, but its nice to be talking to people closer to home - I am in Dublin.
My diagnosis in Dec 2007 was, age 45, 2.6cm, stage 2a, no nodes (SNB x 2 nodes clear). Lumpectomy followed by 4 x TC, now almost finished 25 rads. It would be interesting to know what treatments other 3Ns got ? Is there any common trend?
As my mother had BC 20 years ago (aged 54) and was E neg (they didnt test for the others then) I think there is a good chance it is hereditary and I am going to get tested. If its positive I will have my ovaries removed. Its also important to my 15 year old daughter, as her paternal granny also died of BC.
The good news is that my mother is alive and well, though she only had radiotherapy and had a 4cm lump, she never had a recurrence and is now 75.
best wishes
Katie

JaneRA
Member

Re: Can we have a triple negative discussion thread on forum?

Hi Anita

I have also moved since triple negative diagnosis. Diagnosed in Oct 2003, moved out of London in July 2006, with a poor prognosis. Sure I got regional recurrence 9 months later but don't regret the move.

best wishes

Jane

AnitaC
Member

Re: Can we have a triple negative discussion thread on forum?

Hello all

It's been quite some time since I have used the forum and came on again this morning looking for other triple negs. I finished my treatment last October and life is getting back to some form of normal again now, but increasingly I have been feeling isolated as I have not met any other triple negs.

I am at the start of a huge life change. Selling my house (well, trying) I have lived in for 21 years, which in turn is forcing the kids (23 and 19) to be independant, and move in with my partner some 150 miles away. I keep thinking should I do this as I could die sooner rather than later, which would leave them with the house.

Prognosis 50/50 - mostly my cup is half full, but occassionally half empty (like today).

Have been reading about the TNT trial, so its good to know there are new treatments coming along for us. I think it was there that said that about 15% of breast cancers are triple neg.

Anyway, it's reassuring to find this post

Thank you,
Anita

jaxw
Member

Re: Can we have a triple negative discussion thread on forum?

Well done, Josyemarie! We have been tempted to move house, but have decided to put it off for a bit, but that garden thing sounds wonderful. I am sure you were enjoying working in it this weekend, with fab weather. My poor family are having to spend most of their time practising for Ribbon Walk next Saturday. I started it, then got lumbered with back problem, so I am now Team Motivator!! I think they hate me.... I am always coming up with mad ideas, and not always so good at carrying them through, but it's good fun, and keeps my brain occupied!

It is good to hear that your ides was taken up, R, so I look forward to our own thread soon!

Liverbird
Member

Re: Can we have a triple negative discussion thread on forum?

I think a forum for the triple neg ladies would be great. I was the one who asked for the forum waiting for results and it was granted. Its a well used forum.
We have threads on hormone treatment for us hormone pos ladies so why not a triple neg one.

Rx

josyemarie
Member

Re: Can we have a triple negative discussion thread on forum?

Annie,nothing like a diagnosis of BC to put us in touch with our own mortality! I've always managed to put myself in the 'survivor' percentage.Even with your10% chance- thats still a lot of lucky survivors and you've as much chance as any of them!.None of us really know who will be alive in 5 years time.I've always just plodded on as usual.Started renovating a house while on radiotheraphy,sold it the following year and am now in the middle of createing a 2 acre garden from scratch.I'm nearly 50 and hope to be around long enough to appreciate it!!

jaxw
Member

Re: Can we have a triple negative discussion thread on forum?

Jogging along is good, Jane! We all must do what we feel right. I am certainly no sprinter. I read Jane Tomlinson's book last year, and feel an outright snail! The most I could do during chemo was has a Mcmillan Coffee Morning for about 20 friends, and that was SUCH hard work! What a wooose!
Been lovely to have all your comments,
Best of luck with your future treament,
Annie

JaneRA
Member

Re: Can we have a triple negative discussion thread on forum?

Hi Annie

I hate not knwoing things either but I really do question the 10% 2 year survival prognosis...my score was also 9/9 and I had 23 nodes with cancer and my prognosis was worked out using Nottingham index and adjuvant on-line. You might be dead in two years as might any of us but I still doubt the statstics unless you were diagnosed at stage 4, or perhaps if you have IBC?

My onc expected me to have rapid recurrence but I didn't...it took two and a half years after treatment and is still not in major organs. I know people who had much better prognosis than me 5 years ago, long now dead, and others with a bad prognosis still doing well..its that unpredictability thing again.

I wish could say I lived life full on as result of knowing I'm not going to live that long, but I just kind of jog along doing the best I can.

best wishes

Jane

jaxw
Member

Re: Can we have a triple negative discussion thread on forum?

Hi Jane,
Unfortunately this was obtained with my histology report and a couple of prognosis indicators. My tumour scored 9/9 on the histology scale for tubules, pleomorphism and mitosis, and this was explained to me in great detail by my consultant, as I have nursing background and he knows that I like to know what I am fighting. I can't stand not knowing things,can you?!

Luckily I have a great oncologist who works alongside the surgeon, and along with my breast care nurses, they are supporting me with my decision to find another surgeon willing to do reconstruction.

I must admit that the urgency for reconstruction has faded a little into the background as I am suffering with severe back probs at the moment, not related to cancer, thank God!
Thanks Josie, that is extremely reassuring to hear how far away from your diagnosis you are.

Its a weird thing living with a ticking bomb isn't it? Listening to the talks about the 2012 Olympics feels slightly surreal, and planning events takes on a different significance. Noone knows when that number 99 bus is round the corner, but we live with that fear on our doorstep all the time, while others never think about their mortality. I must admit that I never did. Now I live life as full and furious as I can. I NEVER put off doing anything or saying anything to those I love. I had a book published, did a stand-up comedy routine, and went cruising! I always loved life, and this has just sharpened up the colours a little, and made me appreciate everything even more. Does anyone think that way? Having a sense of humour really helps the difficult times. I am no longer afraid to be a fruitcake, if I can cheer people up.
Annie

JaneRA
Member

Re: Can we have a triple negative discussion thread on forum?

Hi Annie

Unless you have stage 4 disease which I don't think you do then a figure of 10% 2 year survival is very unlikely to be statistically accurate. Where why and how did your consultant drag that one up?

I think statistics can be useful guides to how groups of people are likely to respond...they never tell us about individuals, but your figure does not sound to me to be based on factal evidence at all.

At prognosis my stats were 40-50% 5 year survival and about 18% 10 year survival..I'm hoping to get to 5 years and think I probably will, but I reckon I won't, bar a miracle, make 10 years.

Jane

josyemarie
Member

Re: Can we have a triple negative discussion thread on forum?

Nanieannie,I agree entirely with Jo re prognosis and reconstruction.Your consultant has no right to refuse you on the grounds of poor prognosis.I must say though that I wasn't offered one(and didnt think to ask at the time) I was given a 35-45% chance of 5yr survival because of the nature of my triple neg tumour- infact they expected the cancer to return within ten months. Thankfully I'm nearly 5yrs down the line,NED and feeling fit and healthy.My dear friend who went through treatment with me and had a good prognosis went for a reconstruction.Sadly she died from secondaries 16mths ago.I'm quite happy with my body but if you want a reconstruction you've got every right to one!...Good luck,
love Josie x

jaxw
Member

Re: Can we have a triple negative discussion thread on forum?

Thanks Jo and Jane. I fully agree that it should be my choice. I never thought that I would want recon., but I have three lovely baby grandchildren, and I find the prosthesis thing a real pain!! When he first rejected my request. I was gutted, and became very depressed. then I thought no-one is going to get the better of me, so I re-grouped, plucked up my courage and tried to insist, as best as I am able. He totally refused!! I am fitter and healthier than a lot of my friends, but I have b/c. How dare he!

I also agree that prognosis should NOT be a deciding factor. I have less than 10% chance of surviving two yeras, and may well go on for another 40. My mum had a very low-grade tumour, only needed a lumpectomy, was on Tamoxifen...really good prognosis, but died within 3 years, so there you go. A statistic is just that. A statistic and nothing more.

Annie

jojo100
Member

Re: Can we have a triple negative discussion thread on forum?

hello nanieannie

this discussion really intrests me as my mum is triple negative, so thanks. just to say that no consultnat has the right to refuse any patient a reconstruction, based primarly on prognosis. therfore i think that youshould def get a second opinion, or contact a plastic surgeon directly. anyway what does prognosis really indicate anyway, look at all the people still around years and years latter, and go on to forget about ever having breast cancer, who have originally been given a bad prognosis, and sadly look at these with a grat prognosis who sadly don't. if you are fit and well and should have no problems with an anaesthetic, there really is no reason for a reconstruction to be refused!
good luck and take care
jo
x

JaneRA
Member

Re: Can we have a triple negative discussion thread on forum?

Hi Annie...not sure if my story is consolattion or frightnener. I also had an extremely poor prognosi at diagnosis, diagnosed at 54...23/25 nodes with cnacer, 4cm tumour, grade 3 etc. I went three and a half years from diagnois to recurrence (regional..incurable), and though I am now nearly at the end of standard chemo options my cancer has not (yet) spread to major organs. Currently on a chmeo break and feeling well..it will be 5 years in October.

My cancer has turned out to be not quite as aggressive as originally thought...my onc thinks my version of triple neg. may not be a basal like tumour.

I didn't want a reconstruction...can't see the point (not because of shortnened life but just can't see the point anyway as don't find one breast a problem) but this should be your choice and unless there is a good clinical reason not to have recon the decision should be yours.

Jane

jaxw
Member

Re: Can we have a triple negative discussion thread on forum?

Wow! Thanks for such a good response girls. It is nice to know that others do exist out there. I have done my own research and found that the American sites seem to focus more on triple neg, but perhaps that is because there is a greater incidence of Afro/American women there, and there seems to be a higher incidence of +++neg amongst this group. Having said that, I am a 52 year old white British female, so I defy all the usual trend patterns!
My tumour was a highly aggressive 5cm tumour, stage 3, grade 3, with heavy lymph node involvement, and my prognosis is extremely poor. I am in a battle at the moment to try to persuade my Consultant to offer me reconstruction, as he told me quite rudely that it wasn't worth it!! I am now seeking another consultant, who might have a better view of reconstruction with poor prognosis.
So thanks to you all for suggestions,Thanks Jane for site addresses, and to Stork for details of trial you are on. Information at last!! Well done to you all
With best wishes, Annie

ChristineMH
Member

Re: Can we have a triple negative discussion thread on forum?

Hi Jane,

I noticed that there were quite a few abstracts from the recent American Society of Clinical Oncology meeting that dealt with triple negative, so oncologists at least are finding the term helpful. I didn't find anything wonderful for you, unfortunately (o.k., I am a bit of a dreamer), but they do seem to be paying more attention to triple negative now that the survival stats on her2-positive are up.

JaneRA
Member

Re: Can we have a triple negative discussion thread on forum?

You can find more information about the REACT trial on:

http://www.cancerhelp.org.uk/trials/trials/trial.asp?trialno=9592

As to whether there should be a separate forum for triple negatives yes maybe, though I think there is a case for other new discrete forums too.

I have been trying to get BCC to produce a leaflet on triple negative breast cancer for over three years now, and the relevant committees keep turning it down on the grounds that there is a scientific debate to be had on whether 'triple negative' breast cancer is actually a distinct sub type of breast cancer. I understand this debate but I don't think its a good enough reason not to have an information leaflet, particularly in the light of increasing press interest in triple negative breast cancer. There are many myths that a leaflet could help dispel. I could have written, and edited such a leaflet accurately and informatively many times over in the time BCC has been mulling on this. Another example of the charity sometimes being very slow and unresposnive (though you do great work in some areas.)

Jane

Jo_BCC
Member

Re: Can we have a triple negative discussion thread on forum?

Hi all,

Thanks for your comments. I have brought this thread to the attention of the senior members of the team.

Jo, Facilitator

janet21
Member

Re: Can we have a triple negative discussion thread on forum?

I too am triple negative and have found the site that Jane RA mentions as a valuable resource. It would be nice to have a dedicated forum on this site as well, as there seems to be an awful lot of women with this type of BC.

Janet
x

horace
Member

Re: Can we have a triple negative discussion thread on forum?

I have triple neg bc and have found JaneRA invaluable both as a source of information and as a fellow sufferer who 'tells it like it is.'I too can recommend the dedicated forum on 'the other site'.

stork
Member

Re: Can we have a triple negative discussion thread on forum?

I was diagnosed on Feb this year as triple negative. It really scared me! I am glad to have stumbled accross this thread: it really is comforting to know that I'm not so alone out here! I am more scared of the words 'triple negative' than I am of 'breast cancer'. It's quite hard to get info of the oncologists and I cant figure out it that's because they dont know or it they are being economical with the truth!! I had a mastectomy, no nodal involvement. I've had 3 cycles of FEC and have just started 3 cycles of Taxotere. I'll have 6 weeks of radiotherapy then. Then it's the waiting game, as Jane RA says 3-5-8 years of waiting to see if it will return!
it was lovely to read Jane RA's email. Jane, keep fighting it girl! And thank you: I'm of to visit that website you mentioned!
Stork x

sharlinc
Member

Re: Can we have a triple negative discussion thread on forum?

Hi all
I am triple negative (treatment just finished and NED at present) and am on the React trial, taking celecoxib (a non-steroid anti-inflammatory) or placebo. Apparently this drug has been found to be effective in bowel cancer trials and is now being tested for other cancers. Fingers crossed!
Sharon x

JaneRA
Member

Re: Can we have a triple negative discussion thread on forum?

As well as the 'other site' which RMW has mentioned there is also a site in the US specifially for triple negatives. Its the triple negative Breast Cancer Foundation tnbcfoundation.org

There is actually much more information around these days about triple negative breats cancer than there was five years ago when I was first diagnosed.

Siversue...your specialist isn't quite right in saying s/he has no weapons against a recurrence. There are a number of chemotherapies available for recurrent and metastatic triple negative breats cancer. Remember that some people with hormone receptive cancer find that hormonal treatments don't work for them, and also herceptin doesn't work for all her2+ cancers.

Currently there is resarch going on here and in the USA on chemotherpay regimes which may help triple negative breast cancer (e.g. carboplatin and ixempra). Some people think that the drug avastin may be particularly useful in triple negative disease, and also there is resarch on a group of drugs called PARP inhibitors. There is a trial of a drug (name escapes me right now..edited..its celecoxib) for people with early stage triple negative bc.

Triple negative disase is probably not one disease but several. Most BRCA1 cancers and triple negative but not all triple negative breast cancer is BRCA1. Some triple negative tumours are what are known as basal type tumours and are thought to be more aggressive but others are not.

Being triple negative doesn't necessarily mean a poorer prognosis..it all depends on a range of factors including grade, lymph node involvemment etc.

But having said all this it is very scary to have triple negative bc (but its scary to have any kind of bc.) I have an incurable regional recurrence and have since my recurrence a year ago had 4 different chemotherapies. I'm very lucky that disaese has not shown up (yet) in major organs but I know when it does I have virtually no treatment options left. But my cancer has behaved in unexpected ways...and though my outlook isn't brilliant its better than it could be.

I went over two and a half years after treatment finished for primary bc before my recurrence. Recurrences for triple negative disease usually show up in the first three years, but that luck wasn't to be for me (I had a lot of nodes involved originally: 23). There is some resarch which has shown that if you get to 8 years without a rceurrence of trip neg. disase you are very unlikely to get one..

These are just bits and pieces of knowledge from nearly 5 years of trying to find out more..if you search for triple negatives on this site you will find lots of other threads.

best wishes

Jane

RMW26
Member

Re: Can we have a triple negative discussion thread on forum?

There is a triple negative forum on the other site. www.bcpals.org.uk

silversue
Member

Re: Can we have a triple negative discussion thread on forum?

Hi Annie,
I think I know what you mean.
I had DCIS 3 years ago, had mastectomy, so no need for rads, and wasn't hormone receptive, so that's it, no further treatment required. I was pleased at first not to be Tamoxifen or anything, but my specialist said it meant if it reappeared or anything he had no weapons against it! Thank you very much! I have 6monthly checks, or 3 monthly at the moment as there is something they are keeping tabs on in the other boob, but otherwise nothing, and I feel a bit abandoned.
Silversue.

jaxw
Member

Can we have a triple negative discussion thread on forum?

Hi,
I am just wondering if there are other people out there with the diagnosis of triple negative cancer like me, who would appreciate a forum to discuss life issues that affect us. It is always encouraging to hear of new drugs and therapies discovered for breast cancer, but we appear to be a much-forgotten group, with no follow-up treatment available to us. I seem to think I may have read or heard that BCC may be starting a new discussion thread on this topic.
I would certainly welcome this addition to an already excellent site. Am I alone or would others welcome the chance for a discussion about treatment (or lack of it), the future etc.
Thank you.