We have just been hit with a TNBC diagnosis.My wife is 44 and we have two young kids. Our world's been turned upside down. There's so much raw emotion and the sense of grief that we all know all too well.Its been 12 days since diagnosis. She had a mastectomy on Wednesday, and a couple of lymph nodes removed. Today we heard that while the mastectomy went well, the borders are clear etc, one of the two lymph nodes had an 8 mm cancer. We are devastated. She's everything I wish I could be and I wish I could take her place, but I know I can't. We are positive and we are hopeful. She's a fighter, she is strong, she is healthy and young. Love to you all.

Hi strongtogether, sorry to see you here, but welcome. You have come to the right place for support and understanding of exactly what you are feeling and going through.Im also TNBC, was diagnosed in October last year, at diagnosis it’s such a shock, disbelief, a very distressing time, sounds like your wife has a great support team so that’s absolutely fantastic.I found doing a mindfulness and meditation course helped me through the early stages of diagnosis, even now I use it if things get on top of me.Try and stay as active as possible, especially through treatment, do things that you love to do to keep your mind occupied.Having a good night sleep was a great help in dealing with your emotional state, so seek help if sleeping becomes an issue.I would recommend to stay away from Dr Google, any information google Cancer Council foundation or BCNA websites .I am currently still having treatment, just finished chemotherapy, Having surgery next month then Radiotherapy.Stay positive, there are a few of us on this forum with TBNC , some of us are still in treatment, some here have been 7 years plus cancer free. I myself have found it fantastic to talk to other people that have had the same diagnosis.I’m happy to pm you privately an stay in contact to help you and your wife, any questions, or just need to vent or just need to tell someone how you’re feeling I’m here.As for finances I went full public, what I have heard though is that yes definitely go public when you have Radiotherapy definitely for no out of pocket expenses.Get a good Breast Care Nurse as another support person, if you feel happy to look for a support group in your area.Sending gentle hugs to you, stay positive, We can do this !

Thank you all for your comments and replies.We have had some good news recently, with the PET-CT scan coming back clear. She had axillary surgery to remove the lymph nodes on that side, and once she is recovered we will start chemo. We feel a lot better, and we can see some parts of an overall plan starting to come together.I am going to be coordinating the help of our support group of family and friends. Trying to keep them involved without putting too much on any one of them, especially at the start when everyone wants to jump in to help. They are good people. We are lucky to be in a good place with good friends.

As others have said, your questions are valid but many will probably be covered by your onc as part of the consultation.Other things to ask (or at least note):Is a portacath suggested? Not fun to have but saves your veins (search for a discussion from January 2018 - "to port or not to port" for the feedback I got from the forum when I was uncertain)Is cold-capping offered - your wife may not want it (it adds a huge amount of time to each treatment) but worth discussing if it's availableAnd one for later when chemo starts - what do we do if she needs better side effects meds at an awkward time (I speak from experience, here)Your oncology clinic may offer ancillary services such as physio, exercise groups, dietitician, psychology - or they may have local recommendations. It's worth finding out about them. I accessed a bc rehab oncology exercise class through a large part of my chemo and it was fully covered by my health fund as it was run by the hospital. Chemo is not a brilliant experience. I would certainly not put it up there with "must do". But for most of us it's not as bad as we expected, although your resilience does wear down towards the end. Unfortunately, the only answer we get as to whether it's working is survival and even that may not be down to the chemo.Best wishes.

I am sure there will be partners’ support groups around, your day oncology unit may be able to helpif not someone here. The type of chemo will depend on a whole lot of things - cancer type and stage, age, any other relevant physical issues (prior health, allergies, any existing complaints), current trials and research, the oncologist’s own experience of effective or less effective treatment in a similar case. Even the cancer type and stage can be subtly different. That’s partly why we don’t have the ‘cure’. Yet. One patient with roughly the same kind of diagnosis may respond well to one chemotherapy regimen, another can’t tolerate the side effects. I don’t think anyone is trying to be mysterious, it’s just complicated. I know my own oncologist chose certain chemo therapies for a) the overall cumulative effect given the two can’t be given together, b) his experience regarding effectiveness for my type and stage of cancer and c) knowing he had one or two options in reserve if the side effects were too difficult. Rather than frequent calls, try making a list of queries and try to cover as many as possible in one visit or call. Your oncologist is the best person to answer these questions. Best wishes.

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 elseWrite your questions down as you think of them ready for the next appointmentTake care

Heartbroken, but unbroken | BCNA Online Network

55 Replies

Brenda5
Member
6 years ago
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
Member
6 years ago
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
Member
6 years ago
Thanks for the suggestion @youngdogmum I will have a chat with the breast care nurse tomorrow.
duxx1234
Member
6 years ago
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
Member
6 years ago
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

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Heartbroken, but unbroken

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