anyone out there triple negative ...

[jackearls1000]

I'm absolutely freaking out ...I cant sleep ...I haven't been told I'm triple negative but now after looking into it ...I guess I am ...anyone out there the same ...I'm scaring myself totally ...help x

[made2b2gether]

hi, there is no point in freaking out. Any illness can have challenging treatment and a difficult / poor prognosis. But the important thing is to get diagnosed by a top specialized physician and then to come up with a game plan to fight whatever type of breast cancer it is. You haven't been told it is tnbc, so there is absolutely no point in jumping to conclusions. And even if it is, there are so many people that have fought it, that have lost a battle to it, or people that are fighting this right now. tnbc is a form of breast cancer, but it is far more complex than just that, and further testing of the exact biology of the cancer and how that reacts to traditional approved treatments also determines prognosis, not simply being told that one has tnbc. So, the fact that you do not know what it is, do not freak out. Your medical team, will figure out a game plan to help you when they have diagnosed you. The important thing is being checked and diagnosed by a trusted and good medical team. You'll be just fine. Hang in there, and follow up with your breast care physician. (and do not read up online).

[jackearls1000 in reply to made2b2gether]

Morning thankyou for quick response ....I have been told I'm er - her2- ...the lump has been removed with a clear margin and all clear lymph nodes ...which is good news ...I was actually told I'm now cancer free ...but I have to go to oncology for radiotherapy and might have to have chemo .....the plan from the beginning was surgery ...heal and then 3 weeks radiotherapy one a day ....but the chemo has always been added at the end ....I haven't been given a stage ...just a grade 3 ...there has never been mention tnc ...ive just assumed as I have been told there is no pill to give me .....the lump was just under an inch big x

[made2b2gether in reply to jackearls1000]

ok noted. So you have bits and pieces of the information. I don't know where you are, but you ought to see a person specialized in breast cancer treatment and specifically tnbc (if it is tnbc in the end). If it is indeed tnbc (when you get your full results), you should have chemotherapy also (whatever is standard for tnbc, based on your specific biological profile and on genetic testing). You should also take a BRCA gene test in that case, to determine if they should also add other targeted therapy (there may be options if you have a BRCA mutation) or carboplatin / cisplatin (platinum) to your chemo regimen. Your doctor will advise on specifics, but the BRCA test result and other factors of the diagnosis will determine the treatment plan / Strategy. On a good note, as you yourself said, your lump is small (under an inch), no lymph node spread as per the surgery, and your margins were clear. These are all important and it is good news. However, if it is tnbc, then I am not sure if radiotherapy first is the right approach. You should get a 2nd Opinion in that case from your doctor and discuss your treatment plan which should include chemotherapy and radiotherapy. I think the order after surgery (adjuvant chemo) would be chemotherapy and then radiotherapy if required (but you should ask a doctor, I am not a doctor).

I believe the chemo would be a must if it is grade 3 and tnbc, and if your doctor does not offer chemo with tnbc, then please get a 2nd Opinion from another top breast oncologist. The BRCA Test immediately will help with surgical decisions and with the treatment plan, so you ought to get the testing done.

You do not know if it is tnbc. But if it is, go to tnbcfoundation.org and there you will find a wealth of information and support.

Here you will also find a lot of information on treatment plans and therapy based on stage and type of disease. If it is tnbc, you should do the full treatment and recommended plan, even if you are diagnosed early. Of course the treatment plan will depend on several factors such as age (if you can handle aggressive chemo), brca status, size and stage at diagnosis, and on things like your decision to do a mastectomy (one breast or both breasts), or a lumpectomy (just take out the lump) - for example, I think with a lumptectomy, radiation would always be added after chemotherapy - is my guess - it is like a package, one after the other. A combination of factors determine treatment so question your doctor on details and ensure that you are speaking with a TNBC specialized doctor or a top breast cancer physician (tnbc or otherwise).

read more here;

tnbcfoundation.org/

Whatever the case, it is good your found this early. Now stay calm, talk to your doctors and determine the right plan to fight this.

Good luck and whatever this is, your can surely fight this. Stay blessed. And wait until your doctor gives you full results. Do not jump to conclusions.

[jackearls1000 in reply to made2b2gether]

Thankyou Lainey ..I have already had the lump removed and told I'm all clear of cancer the surgeon has discharged me till next year for annual mammogram ...treatment now is a sweep to prevent its return ...I'm in Plymouth and its spose to be one of the top breast clinics in Britain ...I'm just confused why they never mentioned tnbc at all .... thankyou for your quick reply I'm so spun out and haven't slept for two days xxx

[Lainey66]

Can I ask what is making you think you are triple negative? Please don't freak out. Soeak to your oncologist and find out all the facts of your cancer. Once you have all the facts you will know what you are dealing with. Yes there are a lot of us triple negs here.

[jackearls1000 in reply to Lainey66]

Morning Lainey ...no one has said tnbc ..yet ....only the fact I'm er - and her2- ...seems logical to me ...I cant have a pill to stop this ...I have to see oncologist in 3 weeks time ...to discuss radiotherapy and maybe chemo ...that's what was said ...they did say that the next course of treatment was purely preventative ...I was to go with an open mind and if I was offered chemo it would be a 4 month course and it can be made to suit me .they have said I'm now cancer free and margins and lymph's were all clear .x

[ChrisChambers]

Try not to panic. I am triple negative. The breast cancer nurse let it slip to me when she rang me to see how I was doing after surgery and before I saw the surgeon again. I completely freaked out as I'd read all the bad things about TNBC. I was exactly the same as you. Stage 1 Grade 3. Clear margins and no lymph nodes. I had FEC-T. 3 of each. Coped really well then 20 radio including 5 boosters. That was 2and. Half years ago. I am absolutely fine. There are a few forums just for triple Neg. I follow one on McMillian. It's full of hope and happy stories. Lots of people who were diagnosed 5-10-20 years ago. And people who are going through treatment now. There is lots of positive things about TNBC. Like it's actually more responsive to chemo. Talk to your doctors. Try not to google everything. You will get through it. Sending much love and hugs 🤗

Chris from Chester.

[jackearls1000 in reply to ChrisChambers]

Ohhh Chris ,,,thankyou ...I'm crying with relief ...this sounds like it ...they did say if chemo is needed it would be 4 month treatment which I spose is good ...they said 3 weeks of radiotherapy ....the chemo was a might ...its all so confusing ...I'm running away with myself did you manage to go to work with chemo? ..xxxx

[ChrisChambers in reply to jackearls1000]

No I didn't. I probably could have for a lot of the time. But you have to allow up to 1 week for feeling rough and 1 week because ur immunity is low. I'm a civil servant so I do get paid when I'm off up to a point. I said at the start that I was going back to work so I was given a lot of support. Depending on what job u do it is possible. But you do need to rest cos chemo takes it out of you.

[Lainey66]

I was diagnosed in 2015 and told Ieas tnbc. As Chris has so correctly pointed out there are very happy stories out there and I intend to be one too. I had all lymph nodes removed and then had residual cancer. I'm now under the care of liver unit too ... the joys... but I am still positive and if I have to will go through chemo again to best this. I'm so confident I have booked a family cruise for next year 😂😂 take care and all the best. Lainey xxx

[carolinenailsea]

Dear Jackearls

I hope the story of my journey helps you to feel a little calmer and optimistic. My cancer sounds similar to your own and I now feel great and am cancer free.

I was diagnosed with grade 3 stage 1 triple negative breast cancer in Jan 2017. I had chemo therapy (the fairly standard FEC-T - one treatment every three weeks on six occasions), then lumpectomy and sentinel node biopsy. The results of the surgery showed that the chemo had done its job and I am now cancer free. I have 15 sessions of radiotherapy starting 30 August - aim is to reduce the risk of reoccurence and catch any stray cancer cells that may be lurking. I feel very positive and well.

As the girls say, keep talking to your health professionals to get as much information as you need. Whilst chemotherapy is not much fun I did find it bearable.

Best wishes with your journey. Caroline xx

[jackearls1000 in reply to carolinenailsea]

Morning Caroline thankyou for your reply...did you have your chemo before to shrink the lump?....how did you find the chemo? Did you lose all your hair was it little and mild dose? And Were you able to function all right like cook clean and get out and about ? Sorry for asking so many questions xxx

[carolinenailsea in reply to jackearls1000]

Hi jackearls

I think I had chemo first because my cancer was grade 3 (and a high score - can't remember exactly what that was) which meant it was likely to respond well to chemo. Also they spoke of it shrinking the tumour. It successfully killed off all the cancer.

I found chemo bearable. Yes I did have lots of side effects but generally they were manageable. I got signed off by my GP so didn't attempt to work. I think that helped a lot in terms of managing the side effects, particularly it helped me manage the tiredness. Towards the last chemo cycle I was sleeping a couple of hours in the afternoon. I know everyone has a different experience with side effects.

I did lose all my hair. I did fret about going bald but when it happened I didn't find it such a big deal oddly. I found my nose was the worst - without hair it was running so I found myself constantly with a tissue dabbing my nose. I only had two days during the chemo when I stayed in bed after lunch, every other day I was up and dressed at a reasonable time and every day I walked my dogs. I managed most things but didn't push myself too hard - got the other half to do more and didn't worry too much about dust.

I wish you all the best Caroline xx

[jackearls1000]

Hello everyone ...my husband spoke to my BCN today and she has reassured him I'm not triple negative ...she said I'm not at any stage ...but a grade 3 .where women my age are 10% at risk of breast cancer but because ive had it ...I'm at 20% at risk, so what ever treatment they have in store for me ..its to get me back down to 10% ..I'm at the very bottom of the hill and the cancer was caught early ....I have to call oncology tomorrow to make an appointment ..so any views on this?? xxx

[josiemarie]

I was diagnosed Xmas '03 with a 2.5 cm TN with spread to my lymphnodes and so much vascular invasion it was off the richtner scale. I had a lumpectomy and auxillary clearance then 4xfec 4xTax and 6wks radio including the underarm area. Went dairy free on diagnosis and took up walking.... the faster the better. Ive had no problems since and apart from a couple of numbish toes due to peripheral neurapathy lve never looked back. May my luck rub off on you all xxx

[CancerkickerKathy]

I am tnbc. I had both of my breasts off and only one had cancer. I am BRCA 1 positive but didn't know till after my surgery. I am also in the US so things might be handled different. I was given the options and chose to have both removed. It's too bad you don't have the option if that's what you wanted to do. Best of luck to you.

[CancerkickerKathy]

I should have mentioned I did have chemo after my surgery healed. I had 5 months. Some were every two weeks then it was every week. From what they say it was more a prevention because of the tnbc. I did ask what happens if it comes back. They say we just blast it with more chemo. My hair did fall out. It started falling out after my 2nd treatment (jan 2016) I forget when it started growing back. They said it wouldn't start till 100 days but I know it was sooner. I liked no hair better then my growing in hair. It was just easier.

[CounsellorSue]

Such a scary time for you, I hope you can be kind to yourself, there is a lot to be scared of.

However............

I was diagnosed triple neg in May 2014, had a lumpectomy, the horrid chemo, and three weeks of radiotherapy which finished in January 2015, and am still cancer free - hooray. All my hair fell out but it grew back quickly, curly at first but is now as it was before treatment, in fact it's fuller than before. I didn't wear my wig, I hated it and felt more comfortable without it. My baldness was like a badge of honour, showing that I was fighting something. And all my hair fell out so it was months before I had to shave my legs again! Such little things were so good to hold on to for me.

I had chemo every three weeks and was able to return to work in the week before the next lot of treatment, which helped take my mind off things. I was lucky to have friends who would take me for my radiotherapy which was always around lunchtime so we would go out for lunch afterwards to make sure something nice happened that day.

When my treatment ended I got a tattoo to celebrate getting my body back - I am the first person in my family to get a tattoo, they were all quite shocked!

This is my story of my cancer. Of course everyone is different, will respond in their own way, have different support mechanisms etc, and I think I was lucky to be able to work while having treatment as well as having fantastic family and friends.

I wish you all the very best with your treatment.

Sue