I had my mastectomy in June. I'll finally be seeing the Oncologist for the first time on Monday. I already know that the minimum further treatment I need is radiation to the chest wall, radiation to the lymph nodes, and 5-10 years of a drug like Tamoxifen. Last month they did a CT scan and a bone scan and sent a sample of my tumours to a lab in America which will apparently help determine likelihood of recurrence. So discussion about chemo is a possibility.
For context, I have a debilitating chronic illness that gives me immense fatigue. So I am particularly wary of therapies that will add more fatigue. And I know that my current illness won't allow me to travel and attend daily hospital appointments (even without treatment side effects) - I'll be bed bound for at least a week after just 2 or 3 trips. If I push through that, then worsening disability will become permanent. So there are some complicated logistics to be discussed.
What questions should I prepare ahead of my Oncologist appointment? I know to tell her about my co-morbid conditions. And to ask what were the results of the three tests/scans. But after I left my post-surgical result appointment last month realising that I hadn't been told what stage my cancer was at, whether the grade had been revised or even if they got it all out with clear margins, I can't take it for granted that I will be told everything I need to know unless I ask directly. So I would like to be prepared. My memory isn't great.
What are the basics that I need to ask?
What questions do you wish you had asked in the beginning, once your radiation was underway or completed?
Thanks
Hi MoominAncestor, I was going to tell you what I asked but then I came across this on The Royal Marsden's website which I thought was a really good exhaustive list. Wish I'd come across it before my appointment.
Here is what it says:
Many people say they either don't know what questions to ask or they just can't remember them. To help you think about what you want to ask your doctor, you may find the following questions helpful.
About my treatmentWishing you all the best with your treatment x
I must admit to not even knowing that the Breast Surgeon leaves little clips in the area where the tumour was, so when it comes to radiotherapy they know where the cancer that has been removed (hopefully) was. I asked the Radiographer how they knew where the cancer bed was to target. Basic, but there we are. If you have radiotherapy you need to know how to look after your skin - and what to moisturise it with. I am not finding it too tiring but fatigue can be an issue.
Thanks Godwilling and Venicelagoon.
I didn't know about the clips either! I think half my boob was tumours so I'm curious as to how they would mark that with clips. Ah well, that's not for me to worry about.
Those questions are really helpful, thank you.
I had a telephone appt yesterday with the lead Radiographer. She asked what side effects I was experiencing. Pink and a bit sore breast because the radiotherapy builds up each day and continues working. She stressed the moisturising. On this site there are people whose cancer comes back, so I asked her about this. This is a question to ask an Oncologist. I think it depends on the type of cancer you have. After all this treatment you get annual mammograms for 5 years and I wondered whether this was sufficient for people whose tumours have not been easily detected on mammograms. I got what seemed to me an odd answer from a Radiographer.....National screening won't give you an MRI scan because of the radiation !!!!! That's after they've given me 15 sessions of daily radiotherapy !!!!!!
Just revisiting this one, I'm on the penultimate radiotherapy tomorrow but they also hold clinic so have asked to see oncologist as never met them before. I had a phone consult with a then retired locum. I suppose the main thing i want to ask is prognosis. How likely is is to come back?
Anyone think I should be asking anything else? Thanks x
I think that's a perfectly valid question to ask. I'd like to know the answer too. This is because there are obviously people on this site who are devastated that a tumour has returned after all the treatment they've had. I asked what would be the chances of it re-occuring without radiotherapy, but did not get an answer other than that they use the Predict tool and it was recommended for me by everyone. I also know that if you have radiation it can alter the breast tissue so that Surgeons find it more difficult to work with if they do have to go back and do something about a new tumour after radiotherapy. I was told really not to worry about re-occurrence, but one can't help worrying when seeing that it can re-occur. We are supposed to be back to examining for lumps ourselves after radiotherapy. "New normal" I was told.........what a phrase !!!
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