Diagnosis help

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Hi everyone. This is my first post and wanted to know more about my journey. This is what I know so far…

I have tumour around 5cm in left breast with nodes involved, grade 3, it’s invasive ductal, high grade DCIS, ER8, PR8 and HER2 3+. Consultant says its Stage 3 cancer.

I’m 47 but feel like 87 !!  Currently on 3rd lot of EC chemotherapy of 4. Then I have 4 lots of D chemo, Phesgo, surgery(whatever that looks like) and then radiography and hormone treatments. Long way to go. 

I’m feeling awful as expected during Chemo. Each one worse and my mood is so low. What I’m struggling to understand is what my outlook is as so many unknowns.  Should I and my partner be questioning treatment and journey as just feel there is no end to worry about. We don’t get much information from the consultants other than what I know.  Maybe I just need to hang on in there. 

if anyone able to relate with the above would love to know more. Thanks in advance. 

  • It is great that you have so much info already, and that you have a pretty clear treatment plan. Your cancer and treatment journey are unique to you and your MDT will be doing everything they can to give you the best outcome.

    Chemo is really tough but the oncologist will have a better idea of how everything is responding when you've completed that. Do you have scheduled scans? I had an MRI after round 3 of 6 and another after round 5 to check what they wanted to do about surgery. I was lucky that the chemo shrunk the cancer enough for me to have a lumpectomy.

    I was advised that things are changing and getting better all the time, so if you Google prognosis then it will be based on data from years ago.

    Having said that, there is a tool that can help, link below. It has been recently updated and I noticed that my prognosis is better now than when I first started treatment 4 years ago.

    https://breast.predict.cam/

    I didn't have the same diagnosis as you but had similar treatment (I was hormone + but HER-). It is a long journey and one that I'm not through yet, but the way I think about it is that it will then give me the best chance of living a long and healthy life. I am a similar age and my surgeon said that they wanted to throw everything at me to give me the best chance of living for decades to come. It is a good message to hold on to.

    Good luck with your treatment. There will be time to ask questions once you are through chemo and they are thinking about surgery.

  • Thank you and your second from last paragraph lovely to read.

    No planned scans yet but think there will be a scan during the change of chemotherapy. It’s difficult to guage at this point but like you say will become clearer nearer surgery. It’s difficult to be positive when so many unknowns.

    I don’t dare look at that life expectancy calculator as feel it’s going to be bad news but I suppose the reality of it all is that I am in a bit of a grim place like allot of the people on here and suffering with cancer. 

  • Sorry you are in this situation. Uncertainty is awful and does leave you questioning what you know and don’t know. I have a different type of cancer (TNBC), and a different stage (metastatic, unfortunately), so I have been through a different treatment pathway. Treatments vary depending on cancer type and stage, and from what I have known other people experience, your treatment plan seems to be standard for HER2.

    I have always chosen not to ask for a prognosis. I am not sure it’s possible to say with any accuracy given so much depends on how you react to treatment, to your underlying health, to the extent of cancer despite its stage. Treatments are improving all the time. I also didn’t like the idea of having a use by date suspended over my head.

    It’s easier said than done, but I think you have to have faith in the people who are treating you to have the best possible plan for your situation. All you can then do is take it one step at a time. Wishing you all the best.