Together we will beat cancer


HER2 Positive breast cancer

17 Aug 2019 07:46


I have just found out that my Stage 1A cancer is HER2 positive. I had DCIS with 3mm invasion and lymph nodes clear. I was shocked to find out that I might need chemo even though nodes clear, and herceptin. Seeing oncologist on 9 September. Sounds as if I may have some difficult decisions. I’ve read up on HER2  now and understand more but in anyone else in or been in the same boat?




HER2 Positive breast cancer

17 Aug 2019 20:22 in response to WendyBr

Hi there ...

Sorry you've not had a reply ... l know there's a few breast lasses on here .. myself included .. but I was her neg ... so can't help .. and can't remember off the top of my head who was her positive... but this will take you back to the first page .. and hopefully someone will pick it up ... who can answer ...

But welcome to our little chat place... Chrissie x

HER2 Positive breast cancer

17 Aug 2019 22:32 in response to WendyBr

Hi Wendy

I was in a similar situation. Had stage 2 HER2 positive in both breasts. Had my double mx surgery and implant recon and nodes were clear. However as I was HER2 and quite young (37) they recommended 6 x chemo (called TCH) and Herceptin for 6mths. The chemo I will be honest was tough - I only had 5 rounds in the end due to sepsis...but I saw it as insurance policy against any possible nasties that might still be lurking. The Hetceptin was easy peasy - no dramas at all.

I'm now 16mths post treatment and physically feeling really well. Emotionally I have had some troubles but feeling fit and well. Just take each step at a time. You will get through it lovely lady xx best wishes xx

HER2 Positive breast cancer

17 Aug 2019 23:47 in response to Crazytimes2017

Thanks that’s helpful, I had bottom of left breast removed not a mastectomy, but at the time they thought was only DCIS.  I am older than you at 58, the invasive cells were only 3mm I don’t know to what extent that will change the recommendation, see what the oncologist says.

HER2 Positive breast cancer

18 Aug 2019 06:07 in response to WendyBr

Hi Wendy, I have only recently joined this forum and wondered how you are doing, I too have HER2  positive breast cancer, I have had a lumpe6and sentinel node biopsy and nodes were clear, I have just had my first chemo session zm on paclitaxel every week for 6 months, had lots of tears about loosing my hair but could not face cold cap every week so now waiting for it to start dropping out I have also had my first herceptin injection end will be having them every 3 weeks for a year, still got radiotherapy to come after chemo then will be on Anastrazole tablets for 5 years so long slog ahead. I expect you are on a similar regime, do let me know how you are getting on, it is somehow comforting to talk to people in the same position as you understand what each other are going through. Big hugs

Krissy x x 

HER2 Positive breast cancer

18 Aug 2019 10:53 in response to Krissy7

Hi Krissy

Sorry to hear what you’re going through sounds tough, you’re further down the road than me I only just found out about the HER2 and until I read up on it in the last couple of days i didnt understand the significance, it’s been a real shock and blow, very scary. I am seeing oncologist in September and I don’t know if she’ll recommend chemo and herceptin, and I can barely wait to see her, it seems to be I will go for it, from what I’ve read, scary either way. I’m struggling a bit  emotionally with all this and also find the only thing helping is communicating with others going through the same. I have 3 friends who have had breast cancer but none were HER2 positive. 

It would be good to keep in touch. 

Keep strong I’ll be thinking of you.


HER2 Positive breast cancer

18 Aug 2019 11:44 in response to WendyBr

Hello love,

i was her2 pos, lumpectomy, chemo, rads, herceptin anastrozole and bone meds, I had clear margins and no lymph node involvement. Instead of feeling down ( and I certainly did in the beginning) I now feel lucky I have all these targeted therapies available to me, some cancers don't. 

Your right at the beginning, and believe does get easier as you go on. All The therapies are our insurance, I just wanted everything thrown at it....I'm now 3 months out of chemo and a couple months out of rads....I'm tolerating all the other stuff well. They keep a good eye on you....


let us know how you get on? Xx

HER2 Positive breast cancer

18 Aug 2019 12:13 in response to WendyBr

Hi Wendy, 

I think we all find it very scary and there is so much information to take in too, plus like you I read everything I could to understand it and know what I am up against. Make notes of questions you want to ask the oncologist when you see him or you will forget. My oncologist told me that the chemo would not provide that much protection  it is the herceptin that provides most protection but you cant have the herceptin without chemo, bad luck eh. The oncologist has an app on his computer that gives rough percentages. We all go through dufferent emotions at different times, i have only just stopped crying at the thought of being bald but have at last got my head round it, still sad, yes but have bought loads of pretty scarves which I will fashion with accessories. First time I went to look at wigs I didn't want a wig I didn't want to loose my hair didnt want to be there so i didnt like anything, not in the right frame of mind. This week i saw a lovely male hairdresser that comes to the hospital with wigs etc, he was lovely and I have now chosen one, maybe two with Christmas coming up. It takes time to accept these things and everyone is different so what ever works for you will be right. I am always here if you want some tips, to rant to cry or share some funny moment, there will be them too. Stay strong but most of all be kind to yourself.

Love from a fellow warrior

Krissy x x

HER2 Positive breast cancer

18 Aug 2019 18:22 in response to Krissy7

Thanks, I’m not as worried about my hair I just think it will grow back. My daughter has alopecia and she doesn’t know if her hair will grow back so I think about that, that mine likely will grow back and I’ll just get a wig or something. Stressful time for all the family but I’m not the only one going through this.

Thanks again and all the best. x


HER2 Positive breast cancer

18 Aug 2019 18:34 in response to Marlyn

Thanks that’s really helpful and a good way to feel more positive about it. I feel like you at the moment, I feel that I want to throw everything at it.  x 

HER2 Positive breast cancer

3 Sep 2019 20:34 in response to Chriss

Hiya everyone i to am Her2 positive hormone negative diagnosed in june 19, stage 1 no node involvement. Just 2 weeks into chemotherapy 12 x weekly taxol and 18 herceptin followed by radiotherapy. i sometimes feel like im a car without a driver no idea of my destination but i am positive 90% i think with anything its hard to be positive all the time! I just wanted to say your not alone.  Be kind to yourself xxx

HER2 Positive breast cancer

8 Sep 2019 09:57 in response to emmylou77

Hi Emmylou77 (and others!) - great to find this thread.  I was diagnosed Her2 positive on 31 July, surgery 6th August (12mm tumour) and meeting this coming Friday 13th with oncologist to start treatment - like you emmylou77 - 12 x weekly tasol, then a year of herceptin and radiotherapy.  I'd love any insights from those who have been there before me on how this all transpires.  I know that different people react differently, but any accounts of what is to be expected, to help prepare myself, would be great - obviously hair loss (how quickly does this happen?) and I've also heard of possible finger and toenail loss (eeep!).  Sleepless nights, puffyness, nausea - I'm doing the old 'prepare for the worst and hope for the best!'.  I'm a pretty positive kind of person, though it's all still quite surreal really that this is happening - it's all happened so quickly. It's a funny kind of comfort knowing that there are others going through very similar feelings, treatments, etc.  I'll look forward to any insights at all.  Thanks Happy Sally

HER2 Positive breast cancer

8 Sep 2019 19:13 in response to SalT

Hi Sally,

If you are having paclitaxel ask about a lower dose weekly instead of the higher dose every third week, test have found that although over a six month period you end up with the same dosage having it spread  weekly and lower doses the side effects are less, I just finished my fourth one Thursday and feel ok, bit of a scabby nose and sore throat, still have hair but have been told that might start to thin now I have started my 2nd cycle (3 lots of chemo = 1 cycle) nails ok so far, I will keel you informed. I should have had 2nd herceptin Thursday but my echocardiogram came back to low and as herceptin effects the heart walls they stopped it,  had to have a 2nd echocardiogram and see oncologist Friday, I know it's now a little higher so hope I can go back on herceptin as this is the one we all need for HER2 positive,  but they will keep a close eye on your heart throughout treatment. I have scarves at the ready and have chosen a wig but have not bought it yet. Feeling positive which ever way it turns out and like you said, it's nice talking to people going through the same thing. Keep in touch and we'll laugh together maybe a few tears on the way but we will get through it.. I  am looking at holidays for when treatment is over and immune system gets back to scratch so I can fly somewhere exotic and chill, nice to have something to look forward to.

Krissy x x

HER2 Positive breast cancer

8 Sep 2019 22:07 in response to Krissy7

Thanks for this insight Krissy, all the very best to you for your ongoing treatment and please keep me posted with your progress. x

HER2 Positive breast cancer

17 Sep 2019 18:54 in response to SalT

Im on my 5th of 12 Taxol this Friday, i cold capped i still have my hair, im always hungry i dunno whether it's because im trying ti stop myself from falling asleep, ir because of the steroids. I feel ok just really tired my sleep patern is well all over the show  i hadn't gone thru menopause i believe i am now so hormones are a bit messed up, but last week i was 3/4 of the way through and next week will be halfway through. If i could give you any advice it gets slightly more tiring each time you have treatment. Rest up, don't fight your tiredness! Be kind to yourself! take one day at a time! don't put any pressure on yourself