Many people that are HER2+ do get targeted treatment and chemotherapy like myself. I’m assuming when they mention the stats, they mean your Predict score. You can do it yourself here https://breast.v3.predict.cam/
Predict has recently been updated to take into account effects of radiotherapy, chemotherapy and Herceptin on the heart which can increase mortality. I have heart scans and my recent one had an ejection fraction rate of 60% down from 68%, within normal range for women 55-70 but I notice I get a bit more out of breath but also need to factor in all my other treatment that may have caused it. I didn’t have lymph node involvement but had bilateral (both) breast cancer, a primary in each breast, grade 2 HER2+ ER+ 20mm and grade 1 ER+ 9mm.
There are also studies of offering 9 instead of 18 cycles.
If I were you I would call up to speak to your oncology team to get reassurance as well as the BCN nurses here * Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
I’m sure your multi disciplinary team will have carefully looked at everything in your individual case, but always worth asking why.
Take care and let us know how you get on as it will help many others.
I had a PICC line and had several problems so no experience of Hickman.
Maybe you could call the BCN for advice * Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
Hi entropy. Yes yours seems very similar to mine. Thanks for replying its quite worrying when most with her2+ have the chemo and targeted therapy. I will ask again but I remember being told by the oncologist that the benefit would be 1%. As I said had 10 rads 5 of which were boost. Not too much redness afterwards just a little fatigue.
Hope you’re recovering well after the lumpectomy. I had licap surgery which has taken a bit longer to get over than I expected but pleased with the shape of boob even if its a bit smaller. Thanks for your reassuring words. The Radiotherapy will be here and gone soon and you can move forward. All the very best.
Jill
Thanks naughty_boob. Looked at the link you sent me and put in my scores. From the results it would appear that extra treatment wouldn’t benefit me much. I have had a few replies from this group of fabulous ladies in a similar position to me. Speaking to you all has brought back some of the things the oncologist mentioned. That it would only benefit me 1% and that they try not to overtreat. Hopefully this will be the case. First post treatment mammogram Septemberish.
Thank you for giving your time, advice and kindness. It is much appreciated.
Hopeing you’re doing well.
Jill
OMG - got Covid! I just didn’t see that coming. I was vaccinated again earlier this year. Wonder if it’s coincidence or just my immune system/ whole body is still in recovery mode?
Sorry to hear that. Hope you feel better soon. Not sure anyone gets antivirals anymore. I caught it back in 2022 and got antivirals due to heart condition.
The vaccines don’t stop us catching it unfortunately but should help give milder symptoms. I suppose weakened immune system and recovery would make you more susceptible to catching things.
Oh no @suedot !! That’s rubbish. I hope you aren’t suffering too badly with it. Just when you thought you’d got your tastebuds back.
Hi @chakakhan I’m so sorry to hear you have had upsetting news. I’m sending you a big hug first and foremost as we’ve all been there and know what it’s like. As luck would have it, my plastic surgeon is Mr Kieran Power! I am at Royal Marsden Sutton and am due to have my mastectomy on 7th August. I have had 4 unsuccessful ops (Hadfield’s Procedure and 3 lumpectomies) at another hospital before switching to Royal Marsden. I chose Ms Katherine Krupa as my surgeon and she recommended Mr Kieran Power as plastic surgeon. I don’t think you need to rush into making a decision as to what type of reconstruction you have. I am having a tissue expander after my mastectomy which they will gradually fill with saline to stretch the skin and after 6 months I will have either an implant or DIEP Flap procedure. I have been told that at present I don’t have enough spare fat for the DIEP Flap so it will probably be an implant but nothing is set in stone. I can get you the contact details if you would like them. Sorry I didn’t reply earlier, it was a busy weekend. We can DM if that would help.
Salbert
x
Thank you for your reply and warm welcome,the virtual hug is needed!
Kieran Power I was looking at him too along with Mr Gui.
Will Kieran Power be doing your mastectomy?
I am glad you are in good hands now after your journey so far.
I am just off to see the BC nurse to look at mastectomy pictures and probably to check on me as I was crying uncontrollably on Friday when they said I needed a mastectomy and running late.
However I will message later and share more of my story.
Thank you for reaching out I feel a little better and not so alone.
@chakakhan You are not alone. You really are not. I’m so glad you are going to chat with the BC nurse. My mastectomy is to be performed by Katherine Krupa and Kieran Power will be doing the reconstruction. I feel very confident in their hands. I did my homework and chose someone who came highly recommended. She is lovely and very nurturing as well. Remember there is a helpline on this website so that you can always talk to a BC nurse if you find yourself worried or upset. I’ve spoken to them a couple of times and they were really reassuring.
Our journeys are taking a similar path right now though I am sorry you had 4 unsuccessful operations before this point but it sounds you are in good hands now with your team who sound great.
I am doing a referral to the RM even if self paying as I haven’t had the best experience so far with my hospital team so far.
I have just finished my chemo and surgery is planned in the next few weeks, then radiotherapy
So a couple weeks ahead of you and just getting over chemo.
I have HERT2+ grade 3 in my lymph nodes so lymph node clearance as well.I was diagnosed just before Xmas.
My cancer was missed in my mammograms unfortunately but that is another story!
Funnily enough when I saw the BC nurse yesterday she showed me the tissue expander that I may have that you fill with saline,she said I might get this and they let it down before Radiotherapy and fill it up again afterwards.
She also said it can be kept in and most people keep it instead of having it removed for an implant, not sure if they said the same to you?
I have been told I can have an implant or DIEP but haven’t seen anyone to discuss this further and things keep changing unexpectedly in my treatment and I am not sure if it advised to have a DIEP then radiotherapy for instance.
I would like the contact details please and to DM would be great.
Glad @salbert was able to reply regarding second opinions. I was lucky that I didn’t need one and was very happy with my consultants and treatment plan.
I’m glad your chat with the breast care nurse went well, it’s so important to get a good relationship with them.
@chakakhan My goodness me, our stories are similar. Mine was also missed in my mammograms and scans (it was hidden away and you can just about see something on the last scan but it wasn’t followed up on and a year previously they chose not to do a biopsy) and so a year later had made its way to my lymph nodes.
I’m glad to hear that some people opt to keep the tissue expander as I like the thought of not having to have lots more invasive surgery. I haven’t had that said to me so that’s good to hear. Personally I don’t want to have the DIEP Flap procedure. It sounds like a huge op. I’ll DM you now.
Thanks for posting the info @naughty_boob ; you really are the Breast Cancer Now Encyclopaedia Britannica or our equivalent of the chaser on The Chase! Thank goodness. Don’t ever stop!
I am glad you were happy with your consultants and treatment it is very important you have confidence and trust in your team.
I don’t have a good relationship with my BC nurse and have just been dealing with everything by myself …till I joined the forum so I feel so much better now!
Thank you for sharing your journey,it is disappointing to hear that a biopsy was not done previously and there is now a spread to lymph nodes.
I am only glad that you now report you are in good hands at the RM a leading cancer hospital and have a great team you trust and I am wishing for you all the best as you go through your treatment.
My cancer has been missed on a mammogram approximately three years ago during this time it progressed to stage 3 and had spread to my lymph nodes.
Unfortunately this has spread even further affecting more nodes due to hospital delays starting the chemotherapy after diagnosis.
I did try to communicate changes to my breast during my mammogram but I was shut down each time.
After receiving the all clear I rang and spoke to the unit and expressed my concerns as I felt they were doing women a disservice and I told them that they are going to miss breast cancer in a woman in the future.
Unfortunately I did not know that was to be me.
I keep thinking if only but I have to get on with the battle that lays ahead.
Yes the tissue expander the BC nurse said they can cut the end off and stitch up and most people do that,…but interesting to see if your team agrees.
At the moment I am open to learn more about the DIEP in a consultation even to have considered all options perhaps for the future, however like you I am more leaning towards the implant/expander.
In addition they’re maybe more considerations as I have to have radiotherapy too…are you?
The BC nurse also said that if you have an implant you can opt for DIEP in the future, however if you have a DIEP first and it fails or radiotherapy affects this procedure then you can’t have it repeated.
The way that I get to my Inbox to DM is to go to my profile pic in the top right hand corner of my screen, click on the three lines next to it and then right at the bottom of the dropdown menu there is an Inbox option. When I click on that it takes me straight to my DMs. Did you get my message to you? I sent it 2 days ago. Hopefully you will be able to see you have a message if you can see an unopened envelope symbol over your profile info in the top right hand corner. Click on there and see what options you are offered.
I get where you are coming from. Knowing my bc got missed, I now look back at pics from between the time that I got the initial clear and my diagnosis and think to myself “You had breast cancer then but didn’t know it”. I have learned that you have to advocate for yourself if you know something is wrong. Be calm but pushy, is some great advice I was given.
Thanks for that info re the tissue expander. I will mention this at my next appointment about my op which is 19th July. That’s going on my list!
I also have to have radiotherapy due to the lymph node involvement. I am told that it will be 2 months after my mastectomy so I’m guessing early October. They said the operation site needs to be fully healed or it can break down.
We must keep each other posted as we are at similar points on the same path.
Pretty new to looking at and posting on forums so only just found this. Wish I had looked for this type of support sooner rather than doom googling.
Diagnosed on 26 Oct with triple positive 19mm lump. Ultrasound looked like clear lymph nodes so had lumpectomy first. But nope 4 out of 13 of the nodes were positive.
Done 4 ECs and 9 out of 12 Paclitaxels. Had 2 Phesgo injections so far (not my favourite!).
Sorry just to list all the medical stuff but I think it helps me to see I am similar to everyone here. Have started to get a bit battered emotionally and entered a bit of an anxious spiral. Reading all your posts (in one sitting!!!) has helped as it has made me think about all the things we go through and I’ve realised that my emotions need to catch up and of course I’m scared.
Thank you everyone. You all help more people in more ways than you can possibly know.
Thank goodness. Don’t ever stop!