Heartbroken, but unbroken

strongtogether

Thanks for the advice.
I am really struggling trying to understand what is going on. I saw some comments in the tnbcfoundation forums that said that basically it's a mistake to have the mastectomy before chemotherapy for tnbc, because that way the oncologist wouldnt be able to gauge how effective the chemo regimen was and whether to adjust it.....
 I am a big believer in the scientific method, and in trusting the experts etc. I think that googling is not helping me but I can't help looking at it because I don't understand what is happening.  I might go along to the next Med Oncologist appointment and see what I can understand. 

iserbrown

Google sometimes has opinions only of personal experience, not what is correct medically.  
We are all individual and need to put trust in our medical team to get an understanding and get through the process.  
Shared experiences help to get one through but sometimes what is right for one isn't right for someone else
Write your questions down as you think of them ready for the next appointment
Take care

CRM

@strongtogether It sounds like it would help you a lot if you go to the appointments when you can and ask the questions you have.  My partner has been to some but not all of my appointments and I have found that he ends up asking questions I didn't even think of!  

Zoffiel

If you have access to a breast care nurse @strongtogether, use them as a sounding board. They are there for the whole family. Like some others have said, be wary about Dr Google and prognosis via forums.
The oncology world is quite tightly managed. They take advice from the Clinical Oncology Society of Australia (which, in turn, is informed by local and international studies)  about which chemo treatments are recommended for specific cancers. Specific being the key word. 
Some oncologists can be bloody horrible people when it comes to bedside manner and can be woefully ignorant about the social and family impacts of treatment. I've sacked three because their attitude made my toxic blood boil. I think, though, that it's safe to say they do follow protocols when to comes to treating the disease, particularly on the first offensive. 
Cancer treatment is a moving feast and  it has changed considerably since I was first diagnosed. Sometimes you do have to trust the experts to do expert stuff. Which doesn't mean you can't give them a spanking if they don't properly attend to the non clinical details. Mxx

arpie

And also ask if you can record the appointment, to go over it later on.  I've done that with some of mine.  I've only gone back over the one - and it i amazing what you 'miss' whilst sitting in the chair, looking at them!!  Just a recording app on your phone will be good enough

As @Zoffiel says - some Oncs can be a nightmare! My husband's onc was a shocker.  No personality, almost impossible to get information out of - and my initial Onc was similar!  Very brusk & not really interested.  I felt like he considered my condition 'not worthy' of his attention!!

Yep - stay away from Dr Google - it only confuses.

All the best for your next meeting with your better half xx

Brenda5

I used to get terribly dry mouthed and tongue tied and blurt out stupid things and still do. For important oncology appointments I wrote down my questions and also wrote down all side effects and how long they lasted. Sometimes he couldn't do much but other times he could and he really appreciated having it written down for him.

youngdogmum

I'm certainly no expert but I think I've read a few places FEC is used in more advanced cases of triple negative, perhaps that's why your wife is receiving AC-T.

Im on the other side of town are PAH, didn't hear much about partner support groups... maybe try mens shed? 

strongtogether

Thanks for the suggestion @youngdogmum I will have a chat with the breast care nurse tomorrow. 

duxx1234

Hello @strongtogether I’m also in Brisbane and finished treatment nearly 12 months ago now for TNBC. My husband accompanied me to every Oncologist appointment; I wanted another set of ears and he also asked questions which I didn’t think of. I used to take my own list of questions to every appointment as well. I attended chemotherapy sessions on my own which was beneficial for both of us.  I agree with the other comments about contact with the Breast care nurse, as they are a wonderful source of information. Best wishes to you both. 

mum2jj

My husband always came to my appointments with note pad in hand and scribbled madly. I am a nurse and I would chuckle at his spelling. He “heard” and remembered more than I did. 
Hugs
Paula x