This is my first post on a forum since being diagnosed. I am here as I have mental health illness aswell as now a breast cancer diagnosis and I am struggling with the plan. I’ve not yet started and already having panic and anxiety attacks every single night and my days aren’t much better. I have been diagnosed with HER2 positive. I can’t quite understand the clinical letters but looks like there is some node involvement. A 2.9 positive mass and a 7mm and some tiny bits they assume are also positive. I have an enlarged lymph node under my left arm pit. Everything is contained to the left breast. The treatment plan is 3 x EC every 2 weeks, X3 then Docetaxel x 4, surgery etc. I wanted to have Paclitaxel but they haven’t offered it and this is having a huge impact on my mental health. Lots of people on here are on Paclitaxel and I wondered, did you ask for it or was it just given or were you given a choice? Thanks so much for any advice. I really appreciate it. Thank you.
Hi and welcome to the forum nobody wants to join but when you are here you will feel supported.
I’m also HER2+ and the treatment can be quite long, there is a fabulous thread called HER2+ and need some buddies you may want to join.
I was originally told I would have Docetaxel and Carboplatin for my two invasive tumours and no lymph node but due to my own health issues and a family history of heart disease I was given 12 weekly Paclitaxel. I had a 20mm and a 0.9mm tumour so was told this was the best option. It wasn’t easy but it was doable. Chemo is chemo, it attacks the bad and the good cells. Had my biggest tumour been about 25mm I was told we would have had a discussion about going back to the original plan, weighing up the risks and benefits.
Your MDT would have discussed your test results and input it in to the NHS Predict and would have used their knowledge and experience to know what is the best personalised treatment plan for you. Predict has two systems, the newest one uses more up to date information. Please discuss with your team.
If you start chemo in February you may want to join others who are starting in the same month. I found it very supportive.
I’m sorry to hear about your mental health, it not easy at the best of times and having a cancer diagnosis can make it more of a struggle. Let your team know how you are feeling and what information you need. I am the sort of person that needs to know everything and I would look things up on trusted sources such as Breast Cancer Now, MacMillan, Cancer Research UK or listen to Dr Liz O’Riordan on her podcast or YouTube channel. Some doctors like to tell you a bit at a time but I found that frustrating.
You can call the BCN nurses on 0808 800 6000 Mon - Fri 9-1 and Sat 9-1 or call your own breast care nurse.
Thank you ever so much for your reply and kindness and thank you for sharing your story too. Is PREDICT a system? Sorry, I’m learning slowly. Yes, my MDT have discussed and then I was referred to oncology and I think she has put the plan together. Thanks re the mental health, I have told them about it as it’s complex but I don’t feel very heard at the moment and feel that this treatment plan is going to make it worse. I am also a dancer so spend a lot of time performing and on stage and petrified of losing my hair but mostly scared it won’t come back and I already struggle with low self esteem etc. I have tried to find positive stories but of course always end up faced with someone who confirms your worst nightmare and anxiety won’t let go of it. I have asked for a 2nd opinion aswell as it does seem that Paclitaxel is tolerated rather well and I just wonder if this would be a better route with the same outcome. Thank you for the forums. I was trying to get onto the her2 buddies but couldn’t find a post button so looks like I’ve posted this somewhere else…..not the most techy of people! I hope I reply to you ok! Thank you, again. I’ll definitely take a look at the other forums you’ve posted for me and I think the nurses like sounds wonderful. Thank you so very much
I will repost this to the HER2+ and you will receive notifications once there is a new post.
I coldcapped successfully on Paclitaxel (two small, bald patches above my ears and thinning). It’s not always well tolerated. I have a couple of infections, including 6 nights in hospital with a high temperature of unknown origin and an allergic reaction. With a couple of reduced/ adapted doses I was able to complete all 12 infusions. am a very allergic person. I also know of someone on the HER2+ thread who couldn’t tolerate it and was swapped to Abraxane.
This is Paxman’s website, who generally supply UK hospitals
You would have to talk to your team to see if it would work with your treatment plan.
NHS predict uses the size, lymph node involvement, age, pre or post menopausal, hormone status along with different treatments to see what would be the best outcome for you.
Thank you so much for explaining everything so clearly. There is so much to learn. I am very grateful. Thank you for sharing your experiences too, that’s really helpful. I have written a letter to my onc explaining my situation and concerns about the drug they are giving me so I will wait to hear back and I am also asking for a 2nd opinion at the Marsden. Going into this with poor mental health isn’t ideal, so I’m just making sure that this plan is the absolute right plan for me going into it, then I’ll feel more able, perhaps. Thanks so very much and for reposting. I’ll check the notifications and have a look at the getting started link. Really so appreciative of everything you have shared with me
