Moving up the stages

Hi everyone! I'm 8 days post double mastectomy and the pathology came through positive for my lymph nodes, possibly requiring another surgery, chemo and now a Stage 2b diagnosis... I'm due to go to the doctor on Monday but feel as though the goal posts have moved because the surgeon claimed that optically the lymph node removed looked clear.... Is there a better question that someone recommends I ask apart from " What happens to me now?"

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  • Hi I hope you are recovering well post your mastectomy.

    One question you can ask is how many lymph nodes they removed and how many of them were positive - if they removed any at all?

    If the lymph nodes were positive for cancer then it would be best to have chemo as a "belts and braces) option (that's how my surgeon put it!) as the chances that it may have spread increases.

    I hope this makes sense if not get in touch.

    Good luck with everything and this forum is a great way to post any questions you may have xx

  • Thank you!! They removed one lymph gland each side and the surgeon said they looked clear - pathology reports have them at cancerous and then she went on to say something about chemo and that word shut my brain down completely- I find out definitively on Monday what happens - I just wished more nodes were removed while I was being operated on - doing it a second time fills me with dread!

  • I remember at first when they explain what will happens you don't really take it all in, but I soon knew waiting after surgery for my results that if the sentinel node that they had taken during surgery was positive I would mean more surgery, meaning they would have to check all the nodes, they usually remove all the nodes to check them, then you will get the results from that, as soon as nodes are affected chemo comes into play, although with some cancers her2 it is always chemo anyway, and I believe triple neg as well.

    So yes sadly the goal posts can move until all info is known, so after your next surgery you will need to know how many nodes they took out, and how many had any cancer in them.

    Good luck with you next surgery and results xx

  • I can never think of the right questions at hospital appointments. It is only when I get home and people ask me various questions that I think 'why didn't I think of that'. But you are always given some contact details and they are always happy to help. Then there is always this site which is great. There are some very knowledgeable people here who seem to know lots about their diagnosis etc. I guess they must ask all the right questions. Good luck with your journey xx

  • If you think of any questions between now and Monday, write them down, keep a notebook and pen close by all weekend, take them Monday and ask away, x

  • Ask about the test which is now free on the NHS and which can tell an oncologist if chemo will be of help or not and this has nothing to do with the number of affected nodes. I'm sorry but can't remember what the test is called but the doctor will know.

    Good luck with the rest of the journey!

  • Oncotype is the test I believe you're speaking of. I had it and it came back with a result showing that I definitely needed chemo. Felt confident to know it was for a purpose and not just in case.

  • Yes. That's the test. I'm not glad that you have to have chemo but glad that you had the test done and the doctor's advice i's based on concrete evidence.

    While you're going to have the treatment, just keep thinking and it's making sure all the cancer cells are getting destroyed in order for you to live a longer and healthier life.

    Good luck with the treatment!

  • Hi Penny yes ask for your oncotype dx result. I still haven't asked this question as I keep forgetting at each of my apps with my oncologist so I will be asking it this week and I'm mid chemotherapy so time has passed.

    I expect the answers to any questions you think of subsequently are in Your notes / file / paperwork held by the hospital so any answers ought to be available at any time i.e. no matter when you think of them or ask them. I hope this makes sense.

    I received my final diagnosis from the surgeon on 18 Nov. 2 weeks later I asked my breast care nurse questions all about the biopsy and scan results that produced the final diagnosis, that occurred to me after 18 Nov.. When she couldn't answer my concerns she offered me another appt with the breast surgeon who had already presented the final diagnosis. I couldn't take an appt but got a 20 minute telephone call the next day from the surgeon!

    I also finally managed to formulate this question: "What are the specifics about my condition that dictate blah blah" e.g. "mastectomy" or "delayed reconstruction" or "radiotherapy" or even "chemotherapy".

    TBH I have this question form my oncologist this Thursday, being radiotherapy. So I'm still asking questions as they occur to me!!

    Hope this helps a bit. All the best

  • Hi Penny sorry or the delay (!). Just remembered another one you might like to ask:

    "What are my options?".

    I never got given any and have only just started to ask this, half way thro treatment! Which may seem pointless but I know I will feel better about the decisions that have been made on my behalf once I understand them fully. Also, any such options may not have occurred to me until now, as more information comes to light.

    FYI. Yesterday I actually emailed my oncologist secretary's a host of questions. I will take a pad and pen and write down the answers when I get them - am due to see her Thursday.

    Also couple of saturdays ago I re-read all my hand written notes from previous consultations for about the 4th time and found thatsome of them made even more sense now that time has passed and, again, now that I know more.

    All the best xx

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