Could my future be as bleak as the oncs suggest??

Hi ladies
feeling pretty devastated at the mo after an awful appointment with my onc on weds. I’m triple neg, diagnosed in jan this year had mx and chemo but cancer recurred a month after last tax :frowning: It spread to the skin on my chest + chest wall so had a big op to remove all affected skin + muscle. Sadly, another skin met has popped up within weeks of the op- the surgeon clearly never took quite enough…
Anyway, I’m no fool, I know things aren’t looking good as this bas***d cancer does not seem to want to f**k off… But I wasn’t prepared for the prognosis revealed very bluntly by my onc this wk. So far, all scans are clear and everyone has been reassuring me it’s ‘only’ local recurrence. But the onc said it’s only a matter of time before my organs are affected. And she thinks it’ll happen sooner rather than later! She also said she wants to rescan me in a few wks- just 2months after full scans as she thinks it’s highly likely it’s already on the move. She then nearly finished me and my hubby off by saying that when t dies spread, chemo probably won’t work as I’ve had the best types (fec + tax). Talk about stripping us of all hope! I just feel it’s all a bit premature given I’m feelin very well + my scans show no sign of spread.
If my days are indeed numbered, I feel really angry that she has ruined what ‘well time’ I have left. I would have expected her to wait to deliver doom+gloom news until there was actually evidence of spread.
I’m 32 and have a 16mth old baby. I’m alternating between unconsollable and denial. I’m just praying I prove them wrong or at least have years left as opposed to months…
I’m going the marsden on Monday + am hoping for a bit more hope and possibly a trial that could help me.
Just needed to share
tina xx

Oh Gingerbud, what an awful way to treat you! Your oncologist sounds like she has nil bedside manner and, as you say, she has ruined any ‘well’ time you may have. Cancer and its spread is such an unpredictable disease and it stupid to try and second guess its progress. My sister had a very aggressive cancer and she had ten years between diagnosis and death. For long periods during those ten years she was very well. I do hope that the docs at the Marsden will give you some sensible advice and a more positive treatment plan.

AlexG

God Tina, you need a second opinion, and even then you must remember that even if 99% of women in your position go on to get secondaries (which I’m sure they don’t), there’s still one who doesn’t.

What an awful awful attitude. Why was she hitting you with the worst case scenario as if it was a given? Was she trying to convince you to accept a treatment you were resistent to? It doesn’t sound that way.

At the moment you are no worse off than the rest of us with a primary cancer. I have a regional recurrence with another ‘unknown’ lump which isn’t shrinking with chemotherapy, so perhaps I’m worse off than you. My onc certainly hasn’t told me I’m going to die of secondary cancer and I woudln’t believe it if he did.

No one knows how cancer will behave. Yours might be all in the skin and nowhere else. Sorry you need more surgery. I’m having my lump removed under local week after next so have some idea of how you feel.

Be positive and, no, the future is not that bleak. xxxxx Jane

Hi Tina

Please don’t let the poor bedside manner of your onc take away your hope. You have no evidence of spread and that is the important thing. You may have an aggressive cancer but it has shown it’s hand and that gives the docs the chance to do something about it. It is not a sneaky one that has already done it’s damage before it has been spotted. I really hope the marsden has a positive attitude and really good treatment options. Although onc s generally are ok with second opinions, do you think maybe yours has had their nose put out of joint because you have asked for one? Good luck with your appointment. Debx

My heart goes out to you.
What a terrible day that must have been for you and ever since…
I really hope the Marsden can give you more accurate responses and allay some of your fears.
Roll on Monday!
This weekend is going to be pretty tough for you and your loved ones.
Get through it as best you can and maybe plan your questions so you can get all the information you need.
I hope you are taking someone with you so they can record all responses.

I will be thinking of you especially on Monday.
Take the very best of care now,
Welsh girl x

Hi Tina
I was shocked to read your post. Your onc clearly has zero emotional intelligence. Doctors are not all-knowing and no one can predict what your outcome will be. Doctors work on the basis of statistics but remember, there are always people who beat the odds and there is no reason you can’t be one of them. Please take heart. Focus on your wellness and try to disregard these cruel comments.
alex
xxx

I thought that carboplatin was a good option for triple neg mets.I think your onc sounds awful-as far as your scans show it hasnt spread to your organs yet and local recurrence should surely be very treatable.I too am ‘only’ primary but am tnbc and it is such a scary dx anyway without your onc making it worse.Good Luck at the Marsden-I would certainly ask to be referred there if it comes back.
Love
Valx

Hi Tina,
You poor thing, what a thoughtless, horrible onc you have.I can’t believe she has said all these things without any reason to. Until there is proof of spread why has she made out it’s a done deal! My thoughts are with you for Mon at Marsden, please let us know how it goes.
I too am triple neg, have had tax and am on carboplatin…surely this is an option for you too.
I’ve got everything crossed for you,
Sandra x

I am speechless about such an insensitive remark! What a thing to say! I honestly think these oncologists should be taught HOW to deal with patients properly (emotionally I mean). I may even be tempted to report her. This way she would be made aware that this is NOT the way to treat cancer patients, who are going through the most horrendous emotional rollercoasters. Next time she would think twice.
She basically took your hope of recovery away and WHY?
Like other women on this thread have remarked NOBODY knows for sure how cancer behaves. It can be unpredictable. What happens to one woman doesn’t necessarily happens to another. I have heard of stories of women surviving in the face of the bleakest prognosis. One such woman is my acupuncturist’s mother. She was given 6 months. She is still alive 20 years after.
Don’t give up the fight Tina!
All the best for Monday…
Lulu XX

Hi ladies
just wanted to thank you for your supportive posts :slight_smile: I wasn’t sure whether I was wrong to question the oncs oppinion- u guys have thankfully agreed with my own + my familys views that her hopeless prognosis was both speculative + premature. I am still in shock that she could have said the things she did at this stage. I almost suspected they knew something I don’t (either that or she has some sort of crystal ball…).
As well as telling me my organs were doomed + chemo wouldn’t work, she also suggested my decline was likely to commence very soon. I asked whether we could still consider going on our holiday to Canada that’s booked for Xmas + she said don’t look that far ahead as alot can happen in 3months! I was crying at this point and said ‘really? That fast’ and she said ’ yes I’m afraid so’… I just hope+ pray she is wrong- not just for my sake but for my familys.

I’m just on the train to London my marsden appt is tomorrow at 2.30 please keep everything crossed for me ladies and I will let you know tomorrow night how it went.
Thanks again
tina xx

I will certainly keep everything crossed for you tina for tomorrow. It really is quite dreadful they way the onc has spoken to you and your husband. I cannot believe someone in that position can convey a message of no hope at this stage of your disease. I think you will find a very different approach at the Marsden and come away with sense of hope.

I know this may not be that relevant and I may already have said it, if so I apologise. But I was dx with bc and treated with chemo & rads for a 5cm tumour (no surgery as tumour shrunk). 6 yrs later it returned - had mastectomy and at my check up after surgery I had skin mets on mast. site and had major surgery which I think was probably similar to yours - with added complication that I already had had rads. Why tell you this? - cos my first dx was 20 years ago. OK I have had several more episodes but am still here. Back then triple neg didnt exist - I was just hormone neg. It was only in 2004 they checked back on tissue to find I was her2 pos. I was never actually told my prognosis was poor - it was something that was more seen in the way the onc & surgeon were with me, and the chemos I was put on were not normally used for primary bc back then.

Look forward to hearing how you get on.

Dawn
xx

I too will keep everything crossed for you, what a terrible way to be treated and told things. I have liver mets, diagnosed same time as bc in a double whammy, my kids were only 8 months and 3 years at the time, but 3 years later am still here fighting for them.

I hope that the Marsden can help you out, I know loads of ladies here are seen there and get great treatment. I am also keeping it on back burner in case I ever need to seek alternative advice.

No one knows how long we have or how we will react to treatments, so am hoping that you get a lot longer than your onc has said. Keep fighting and prove her wrong.

Take care
Love
Dawn
xx

Tina, I have my fingers & toes crossed for you on Monday. You poor thing I am so angry with your onc. I can just imagine how scared you must have felt… I want to give you a big hug!
Please let us all know how you get on tomorrow.
Lots of love, Emma xxx

hi gingerbud just want to say how appalled i am by the coments of your oncologist, it is her job to fight for you and offer you every option if she doesnt then ask to see another one.You definatly should report her she had no right to say what she thinks will happen.my onc team are very much lets cross each bridge whan we come to it.Tell them at the marsden what she said, dont despair, the goverment has given this fund for cancer drugs that may be able to help you.Onc should only give that kind of opinion if they are asked by yourself. good luck at the marsden

Hi Tina
I tried to post this yeaterday bit it got lost in cyberspace, I asked the moderators to find it for me but they couldnt so here I go again. I am so sorry you had to go through that on Wed, absolutely appalling and I agree with some of the other ladies that maybe you should let her know the impact its had on you at the very least. I am trip neg too and had a regional recurrance. Up until that point my team had been very good and positive, but suddenly it seemed to be wiped out in one fell swoop. They certainly didnt say anything like your Onc said to you but I knew it was serious stuff. I asked last year for a 2nd opinion at Marsden and came out of there feeling a different person, a million dollars. I am now linked to both my own PCT and the Marsden so ask them if you can keep contact with them too, tell them you are very scared and feel that you have lost faith that your own team are doing everything they can for you. I go to Marsden when I need to and each time I come out of there the doom has been lifted, they are optimistic and we chat about chemos and which ones we are keeping in the back pocket for future use. Just using the word future means so much. I went there at end of Aug as its now in lung feeling very dejected but once again they picked me up and they also suggest to my team which regime to put me on next. So far, like you, Ive had fec/tax, then capectibine and now Im on gemcitabine/carboplatin. Never give up hope Tina, dont let anyone take that away from you. Im certain with the new news they have on intermediary cells etc etc they will find something soon that they can tailor which is going to help us all. My BCN keeps saying it wont be long with the amount of funding and research so hold onto that. Will be thinking of you tomorrow with everything crossed. Debs xx

I just want to say that sometimes when others say to us that there will be something coming along that will help you we do tend to look at them and think’ ‘you have no idea!’ BUT… I think my outlook was quite bleak at my 2ndary dx because I already had a lot of chemos, no such thing as triple neg and her2/herceptin wasnt really around in the UK. After another 2 chemos failed my lovely onc suddenly thought to find out if my tissue had been tested for her2 from the previous surgery in 2000. It had - I was pos. - and I got herceptin in time to give me so far another 6 years. As debs has just said - Never give up hope. That life enhancing drug could be just round the corner.

Dawn
xx

Tina, just to add, the whole triple neg thing is a slight misnomer because when I found out I was HER2 neg I felt pretty disappointed after reading all the info on herceptin and how effective it was, so told my onc. He said that HER2+ cancers are more likely to recur, and herceptin merely brought the chance back to that of other cancers. He’d actually published a study on it and is an advisor for the drug company. So don’t feel you’re missing a treatment there.

Hi Tina

Couldn’t sign out without leaving you a message. I too think that your onc’s manner was dreadful. She may well have been having an off day but what she said will affect you for days/months/hopefully years (if you know what I mean!). I really do think you should let her know how much what she said has upset you - if you can.

Big cyberhug,
Alison x

Be thinking of you and your family tomorrow keep possotive and take care elaine

Will be thinkng of you too tina and well done for having the courage and determination to keep going and pushing for a second opinon. Your family must be tremendously proud of you.