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
7 years ago
Something you may not have been told or they just skim over it is that after all the lymph nodes are gone that arm can get lymphodema. Mine was at its worst during chemo and a physiotherapist at the cancer care clinic gave me compression sleeves and a hand gauntlet for it. After chemo it did settle down a lot to what it was and now I seldom need to wear the sleeve any more.
The oncologist I saw a fair bit but it was the oncology introduction nurse who showed me around the treatment area who answered most of the day to day questions.
strongtogether
Member
7 years ago
Hi Brenda,
Actually my wife is a lymphodema specialist, so that part we have covered.
Isnt it ironic?
kitkatb
Member
7 years ago
@strongtogether Everyone has put up some great answers. But definitely reiterate what Sister mentioned. If the med's aren't helping with side effects then for sure chase up your Onc or via your BC nurse as I was extremely sick after the first 2 chemo sessions until they changed my pre chemo med's and after chemo medication and it made a big difference moving forward for me. Don't be shy to let them know something isn't working. Hoping all will be good though. xo
Shellshocked201
Member
7 years ago
Have sent you a private message
strongtogether
Member
7 years ago
Hi folks,
So...... The first chemo session is tomorrow. Its four sessions, once a fortnight for eight weeks, followed by 12 weekly sessions.
Feeling good about it all. Let's kick this cancer's ass!
tigerbeth
Member
7 years ago
good luck @strongtogether xx
Zoffiel
Member
7 years ago
If there is anything good (?) about being young, it's that you are likely to cope with dose dense chemo which is showing very promising signs of being much more effective. It's tough, physically, but the physical is only a part of the struggle. Good support is invaluable. Best wishes to you all. Mxx
strongtogether
Member
7 years ago

Zoffiel said:

If there is anything good (?) about being young, it's that you are likely to cope with dose dense chemo which is showing very promising signs of being much more effective. It's tough, physically, but the physical is only a part of the struggle. Good support is invaluable. Best wishes to you all. Mxx

Hi zoffiel,
I know we arent meant to do this....but have you seen any literature around that? I gather does dense is the term for the newer regime of bi-weekly instead of every 3 weeks?
Zoffiel
Member
7 years ago
Ask your oncologist about that @strongtogether. Dose dense was still in late stage trials last time I had chemo. I was keen to get everything out of the way as fast as possible, with optimal results. My age, past history and regional location, meant it was a 'no' for me. At the time.

Now, this is my interpretation of what I've been told; a bogan synopsis.

Chemo as we know it has not been around for that long. Early patients suffered horribly for questionable outcomes.
Antiemetics (no spew drugs)changed the degree ofsuffering. But not necessarily the outcomes. The idea was to deliver the chemo in a way that prevented cancer cells from reproducing--kill them before they could breed on what was assumed to be a 28 day cycle. Thus the three week chemo. It was also as much as the patients could bear.

Things have changed. Drugs to stop you chucking your heart out, to boost your white cells--all manner of improvement. This has meant that it's possible to deliver chemo on a more frequent schedule that will bump off more nasties. Its a brave new world. But you have to ask the questions relevant to your circumstances.

Once again. This is a non medical explanation. Mxx
Giovanna_BCNA
Member
7 years ago
Hello everyone,

Thats a great non medical explanation @Zoffiel!

I have attached a link below about dose dense chemotherapy
https://www.oncolink.org/healthcare-professionals/o-pro-portal/articles-about-cancer-treatment-and-medications/dose-dense-chemotherapy

Another great site is eviQ where you can look up the actual chemotherapy regime for further information.
https://www.eviq.org.au/patients-and-carers/anticancer-drug-treatments/breast-cancer

@strongtogether hoping the first chemotherapy session went well today, all the best.

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