Hi all,
3 weeks post lumpectomy and sentinel node biopsy and in hospital with an infected seroma.
I’ve been on IV antibiotics and should be able to go home today but having been here a week and pumped full of chemicals I just want to cleanse my system, breathe some fresh air, do a bit of exercise and forget all about cancer.
I have looked at the NHS Predict tool which tells me chemo would have a MINUS number percentage of any benefit and that’s without factoring in my EDS. This is the new unapproved version but even the old version predicted less than 1% improvement. The cancer isn’t in my lymph nodes and the tumour was under 2cm.
I’m 59
On the other hand, it IS HER2 pos and ER and PR positive 8/8 and grade 2 plus my
surgeon and 2 BCNs say I need it. I haven’t had the onco appointment yet and I intend to go thru all ths with them at the time but also would welcome your experiences and opinons for a bit of perspective.
Thanks in advance
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Hi @krissykochanski, I hope you are recovering well. It must now be close to 4 weeks post-procedure.
It may be that other forum users have had a different experience of treatment or procedure, so I wonder if it may be helpful for you to speak to one of our team of breast care nurses. There are details of how to reach them on this page.
Sending our warmest wishes
Bernard
I have EDS and am currently having chemo for grade 2 stage 2 IDC, tumour was 32mm and there was node involvement. EDS wasnt really a factor in the decision because of the positive node and family history.
I don’t know much about HER2+ as mine was negative, but I thought chemo was usually given for HER2+? I’m sure someone will be along who will be able to help though 
Hi
My original treatment plan was surgery and radiotherapy. The core biopsy was HER2 negative. After surgery the final histology changed things….my tumour was found to be HER2 positive. Therefore I needed to have Herceptin for 12 months. I was told that I would have to have chemotherapy as Herceptin is only given with chemo and then continues as an injection every 3 weeks. My oncotype score was 24 which was just below the threshold. I am currently half way through my chemo. I think because you are HER2 positive chemo will be recommended.
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Many thanks. I am meeting with my oncologist for the first time on Monday with a long list of questions
Best wishes for you through your treatment and beyond
Gina
Thank you. I think so too now. This Her2+ thing seems to be the deal breaker.
Many good wishes for you as you go through your treatment
Gina
Hi I am new to all this and just looked up Ehlers Danlos and chemo. I was diagnosed with non invasive DCIS and had this removed. However they also found an 8mm invasive tumour HER2+, lymph nodes clear. I have now been told I will need chemo, standard and injections, and radiotherapy. I am really worried about my general health. I have mild Ehlers-Danlos, Migraine with visual auras (where tinted lenses), poor general immunity having had ME in my 20s. I am now 61. Worrying how my body will cope with the chemo. not seeing the oncologist for another 10 days.
Hi, I cannot advise you about whether to have chemo or not. I think you need a really good chat with your team. What I can say is that in my own experience chemo is much more manageable than in the past and there is a lot more help available than in the past. I’ve had very little nausea but tiredness is an issue. I hope you can find the informed professional information you need to make your decision. Sending a hug. X
Hi and thank you for your reassurance. I am seeing the oncologist for the 1st time in 8 days so hopefully they will take my issues seriously. Thats my biggest concern that they won’t and then i will end up with unsuitable treatment. I think this is just based on my past experience of i have been dealth with re EDS symptoms
Good morning,
It may help to write your concerns down and highlight the main ones. This will give you some structure and hopefully control. Do you take someone with you? An ally can work wonders. Maybe practising talking about your issues could help too.
Information makes us stronger so don’t be afraid to ask ‘why’. There will be reasons for your health care team’s logic. If you fully understand you are in a much better position to move forward.
There is always support and love here, and the nurses on the site are waiting for any questions you have too. I hope you can find your way and get the best treatment. You absolutely deserve it. X