HER2 Positive ...

Morning! Sorry you’re joining us, but good to have you here. It’s a horrible shock and is incredibly surreal isn’t it because everything goes on around you and you’ve got these constant nagging thoughts going on. I’m a very pragmatic person and I found gathering as much info (from trusted sources not google general which will drive you nuts) helped me. I felt if I knew what I was letting myself in for and I planned it a bit it could help. I also found it better to stay distracted, easily enough with a 12 year old and avoid people who’s mum, aunt, etc had cancer because I found the constant advice really annoying!! We all agree you’re in the worst phase atm, have your diagnosis, waiting for those results, treatment not started, it’s overwhelming and odd because you don’t feel ill. I’m lucky as I have good friends and was given space to vent but I also had a major meltdown quite early on and I had a huge long chat with a Macmillan nurse on the helpline and it helped enormously, just to get it all out there and kick it about a bit. After that I mentally broke it down into chunks, dealing with each as they came and trying not to think about the next stage, results, chemo, surgery, more chemo? (I can’t have radiotherapy as I had it before) I’ve just had my last chemo prior to surgery so now I’m starting to really think about surgery. Also, don’t try and do too much, you don’t need to be a super hero, or especially brave or anything! It’s god damn scary. And use that dark sense of humour, has kept me going. Keep posting when you need to, all the best xx

Morning

Thank you so much for your reply, what you say makes perfect sense, I am fortunate that I have a large supportive family and close friends who have been amazing, as you say this is probably the worst part ( after initial diagnosis) I have spoken to Macmillan and they were so helpful. Doing my best to keep busy and try not to dwell to much. I too have a dark sense of humour, I'm sure I will have many breakdowns but am determined to beat this beast!

All the best to you, x

You will go through all emotions, more than once!! Having that support is the most valuable thing, they really do keep you going xx

Hello

Im triple positive too and was diagnosed in June. I had surgery in August and am just about to have my third chemo (I have 9 to go after this one). These 9 will target the HER2 with Herceptin every third week. My chemo should finish on the 1st February. I'm then having radiotherapy for 5 sessions.

I too haven't googled but have used Macmillan and Breast Cancer Now as a support and to gather information. Breast Cancer now have separate sections on their forums and joining an October Chemo group has been so helpful.

Back in June when I was diagnosed I didn't look forward and only went from one appointment to the next. That helped my head a great deal.

I still feel very angry that this has happened to me but I acknowledge that anger won't help me. I'm just pushing through, taking each day at a time. Some days are low, sad days, other days I'm happy, positive and enjoy being outside or meeting a friend for coffee and having my kids round for lunch.

Im trying to see it as a blip in the road and by the spring I'll be out the other side.

You can do this 

Lou x

Hi I am triple positive have you had treatment plan put in place yet. Best wishes xx

Hi, can I ask how your treatment is going pls, best wishes xx

I’m triple positive too but further down the line I found it hard to get in touch with other triples lol so this is good like the kadcyla thread I was on tchp regimen and then had surgury with full ALND then 20 radiotherapy which included boost to supraclavicular fossa above collarbone as mine had spread to neck day one …a pandemic patient now on kadcyla ..halfway through . I will say a lot is said to you and you are spinning around but I’m still here and many other tripples I too found it easier especially first year of treatment to break it down step by step and it’s only this year I’m ready to ask more questions don’t overburden yourself at min because the mind needs time to adjust ..I too have children and usually very active but I listen to my body now and take a rest when I need and am active when I’m up for it but a little exercise sooo good for blowing away cobwebs and negative thoughts a little walk meet for coffee etc and children can amaze you at what they can do lol and I’ll tell you I had the most interesting conversation with my 11 yr old son whilst out for a walk and he was so clever about the situation but I didn’t ever go into many details etc so feel free to chat away hope treatment will be kind to you

Morning ladies

Triple positive, diagnosed November 21.

I have now had 3 of 4 TPH chemo treatments, following that I move to EC for 4 treatments, the 7 days following chemo is the worst for me, I have no energy and feel pretty rough. I have heard differing views on the EC some say it's easier than TPH others harder, I suppose like everything on this journey the experience varies from person to person, one day at a time.

I have also had genetic testing via Great ormand street as my dad and his sister both had breast cancer in latter years, so there is a chance it could be genetic.  The geneticist was very informative, but it upset me when she said if I'm found to have the faulty gene, I would be offered a double masectomy, and hysterectomy, I was told at the beginning I would need lumpectomy (don't think they call it that anymore) and lymph node removal, so I was upset at the thought of double mastectomy, however, having had time to think, if it helps to reduce chance of recurrance, it's a small price to pay, and for me at 57 not such a big deal as for a lady in their younger years.  I have also chatted to my sister's as there will be decisions for them to make if I am positive for the faulty genes.

Im still unable to work as my gp has advised strongly against going in to the office, and my company seen unable to set my PC up from home!! Very frustrating.

I continue to take support from my family and friends, but some days are a struggle, mentally and physically.

I wish you all well, best wishes

Xx

Hi I’m triple positive, waiting for a CT scan before starting chemo. I haven’t met the oncologist yet so I don’t know what the treatment regime will be as yet. Best wishes xx

Hi bumblehead, have you a date for your surgery yet,  wishing you well with your treatment. What surgery will you be having please. I have had surgery a theraputic mammoplasty xxx