Forum Discussion
Talking to Doctors about feelings
Hi All
I am trying to come to terms with the course of treatment I was persuaded to embark upon. And, while it is too late now to change I wanted to talk to my surgeon about how I felt. Specifically about not being given all the facts at the start. I wrote a "speech" so I could ensure I remembered what I wanted to say but didn't quite get to deliver much of it. The surgeon thought I wanted to know more about the technical aspects of the SNB and spent 1/2 an hour explaining it. My issue is that having had neo-adjuvant chemo I am much more likely to need a full node clearance as SNB might not work. Thus I am 5 times more likely to develop lymphedema (using stats provided by surgeon). There is no advantage in terms of survival to have neo adjuvant chemo first so I am still thinking why could I not have had the mastectomy at the start which is what I asked for. I could then have had the SNB possibly avoiding full node clearance and also possibly avoiding radiotherapy and all the risks associated with that. Obviously I am not looking for answers here but I am so frustrated that I cannot talk to my surgeon that I am seriously considering changing - which everyone (including me) will think I am mad to do as she is very highly regarded. I think this qualifies as a rant. Sorry.
22 Replies
Hi Waving,
I know you have said that it is too late to change now but if you have not had your surgery why not get a second opinion.
From what I have been able to read on the net it is still possible to have a sentinel node biopsy done after you have had chemo.
Please don't just settle for something you don't want as you have to feel comfortable with your treatment and it is very important for both your body and your mental health to feel confident in your course of treatment, and also confidence in your surgeon.
Do you have a family member or friend who can attend appointments with you so if you are not feeling up to having your say they can act as your advocate?
Wishing you all the best
Xx Cath
Hi Trace, Thanks for the cuddle, I need one today. Love the graphics - how do you add them. I have found the BCN and chemo nurses to be great. But only the surgeon can tell me what she is thinking - Just had a thought - going to onc apt next week - maybe she can help. Thanks for your reply, Cheers
Hi There. Yes, I think I should have shopped around a bit. I always get 2-3 quotes from tradies so why I signed up with no questions asked to a surgeon is a mystery. I was pretty caught up in the whole drama and was in the chemo chair within 8 days of diagnosis - all a bit quick and now have time to think (or overthink maybe). Thanks for your reply
Hi There, Glad you have some good communicators looking after you. Thanks for the line " " I will write it down and use it. Cheers
Thanks for the reply Jel. Have decided to send surgeon a letter. Maybe she will be more comfortable with the written word. As above, currently do not have a BCN which I really miss.
Hi Brenda, Did have a good BCN until recently. Unfortunately I am being treated in the private sector and BCN does not have access to medical records or have capacity to talk to surgeon. Going private was also not my idea but seemed to end up there due to haste. Thanks
Hello, have you thought about getting another opinion, or as Brenda suggested, have an appointment with your breast care nurse? I gained more clarification from talking with my breast care nurse, as I was able to make an appointment with her, and she explained my treatments and the reasons why in simple language that I could understand better.
Sending you a cuddle, Trace ??????
Hi,
There's nothing wrong with getting a second opinion.
When I was given my diagnosis, I made appointments to see 2 breast surgeons (both highly recommended). Both were very good, but one spent the appointment telling me everything she knew about BC while the other introduced me to the breast care nurse, gave an overview of my situation and then said "what questions do you have?" and we spent the next 45 minutes going through my 2 pages of questions.
Your concerns are key to your recovery and the surgeon needs to respect that.
I see my relationship with my surgeon very much as a partnership - and I was interviewing the two of them to see with whom I could most easily work!
Good luck xxxxx
I have realized from a number of comments on this website that a surgeon and an oncologist who both communicate clearly and listen to your concerns (mine!!) may be more unusual than I thought.
Every case is different, and what applies to one may not apply to another, even if the conditions seem similar.
But hearing patients out, before demonstrating one's higher knowledge, would not hurt. I had a dental specialist who did the same thing (nothing as serious of course) and I don't go to him any more. Much harder to chop and change for something like cancer I agree. But it's your body, your treatment (not hers, whatever she thinks) and your feelings, and while it's hard, it is possible to say politely "thank you, but I would like you to listen to my concerns first, and respond to them, then I'll listen to you".
An intermediary can certainly do that for you.
Good luck.
