Hi. I have started posting in secondary section but tonight I feel the need for some reassuring words from other TN secondary people please - or anyonbe else who can help me. All I can hear tonight are the words of my oncologist when I was diagnosed 4 weeks ago & he said - about 10-15% of TN cancers are resistant to chemo and if this is the case we could be talking months - He did then go on to say many people do very well if i does respond and go on to live for years but all I can hear tonight is the first bit. I am so scared because obviously the chemo didn’t work on the primary & it seems to have come on so quickly with symptoms I finished treatment last June. - I now have "extensive nodal involvement in chest, neck and cervix plus lung mets in the pulmonary area and now I find out after this fridays meet with the actual ONC who analysed the CT that he suspects bone involvement in my hip but so far I have no symptoms. when I have the chemo now it makes my cough & breathing horrendous. i keep trying to tell myself it is because it is working on the cancer cells that then irritates the lungs but I’m just not convinced tonight. I also suffer from some stress incontinence which is normally fine apart from big sneezes but suddenly with the force of the coughing I find myself in the queue at our local chemist with a basket full of incontinence pads - I am 46 with a 6 year old little girl and am so scared. I have felt OK up to now and I know I am tired as I can’t sleep after chemo because of the steroids. I am sure I will feel better tomorrow but I am feeling so sad and sorry for myself right now and my wonderful OH is struggling so much seeing me like this I don’t want to burden him any more than he already is. Sorry for the outpouring I just needed to get it out somewhere - I am seeing people professionally but no one can be there exactly when you need them & it is not fair on OH to be the only one who has to deal with me in my very low states. the outside world keeps saying I am amazing and inspirational and positive and strong because they never see me sobbing in a heap on the floor rocking in despair. I hate this
Instead of hearing what your Onc said about the minority of TN cancers being resistant to chemo - try and focus on the 85-90% that it works on. I know a lot of people think the “positive thinking” stuff is rubbish but I don’t. Our brains are very powerful and so are our thoughts. Please try and stay focused on the “now” - when ever you shower try and visualise the “bad stuff” inside you being washed out of you and down the plug hole. I was stage 3a when diagnosed last year. Full on lymph node involvement - only one that tested negative after full clearance. 4 x EC and 4 x TAX followed by radical mastectomy 3 days before Christmas 2011 then 15 x Rads. I am loving life - please please focus on the postive stuff - if you continue to worry about the negative sides then it WILL bring you lower.
Chin up girl - put a smile on your face, always always get dressed and put a bit of make up on. We are warriors and we can win this battle.
Deb
xxxxx
Hi
I don’t know anything about your situation but you sound so low at the moment… as ST says try to focus on the percentage that does work… think to yourself I AM A FIGHTER AND GIVING UP IS NOT AN ALTERNATIVE !!! gentle cyber hugs to you.
Hi Millykins01,
So sorry I did not see your post last night. I do hope you feel better this morning, though if you are anything like me it may take a few days for you to have your spirits lifted.
I sm not TN but ER-PR- and Her2+, but I understand your fear, as I am sure most of us do on here. And the sense of isolation that I think you were feeling last night. It is SO hard, but 85 - 90% of triple negative cancers DO respond to chemo. Try not to assume that your secondaries are in rhe 10-15% that don’t.
Bear in mind that you might wish for some counselling to help you through this. It is not everyone’s cup of tea, but bear it in mind. Perhaps speak to your GP, or do you have a Macmillan or Breast Care Nurse?
I wish you all the very best. Let us know how you get on - please.
Verity x
Can’t say anything constructive, but wanted to send you some hugs, sounds like you could have done with them last night.
“85-90% of people have good results with chemo.”
I think I’ve changed to TN given hormone treatments don’t work anymore and I was never HER+. some oncologists just have no idea of the effect their words have - my last bone scan said I was stable - great news - but did my onc think to use this word? Did she hell!! It was the Palliative Pain man who told me and made me feel so much better. I actually had a rant to my Macmillan nurse last week that all 3 of the oncs team that I see are difficult to deal with, and then relented and said sorry I’m moaning. Her immediate response was don’t be sorry - I hear this type of complaint so often. You arenot alone in having a negative onc - as others have said if she’d said 85/90 is successful you’d probably have been much happier. My heart goes out to you I suffer from severe pre cancer clinincal depression and I’ve said to several people who think I’m mad that the mind is the cruellest thing, and if I had the choice between secondary cancer and clinical depression, I’d choose the cancer - I know how bad a mind can be.
Chin up
Nina
Hi Nina
again I dont know enough about your situation, but I have a good oncologist who I trust so I count my lucky stars…yes I think yours did approach it the wrong way, maybe if it is that bad do you have an option to change onc? Nevertheless my dear, try whatever you can to focus on the 85-90% positive stats…this should be your focus and aim, you have a 6 year old, focus on them too, they have a spirit that gives you hope and life itself - I have a little girl just turned 8…dark moments I just focus on what I have and be damned if I am leaving it behind.
sending you a big hug
x
Thanks so much for all your positive comments - I was just in that very dark place last night when the whole world felt like it was caving in. I should have learned my lesson - taken a sleeping tablet at 10 oclock and zoncked myself out before it all crowded in to my head - I do trust my Oncologist & he has generally been very good - I think it is just that every time I get the same stats - 10-15% are triple negative - I am. 10-15% will get secondaries - I did. so now I just feel that of course yet again I will be in that 10-15%. I am generally very positive & really am Ok it was just a bad time & it is always the same pattern when I get over tired I can’t cope. I therefore thank you for responding as it has helped me to know people are out there.
Broomstick - I totally am with you on the depression side of things - i too have suffered in the past & at the time I wanted to end everything - NOW I just want to LIVE more than anything! - our minds can be our best friend or our worst enemy & I plan to do everything I can to help myself make mine my friend as much as possible. I am accessing lots of support both personal & professional & know I am not alone.
Hugs to all of you & thanks for being there XXXXX
Nina, I’m with you on the depression thing. Maybe we need another thread on depression and its effects. After all, between 10% and 50% of BC patients are treated for depression, and that’s a higher proportion than for many other cancers. (Reckon it’s to do with how the treatments mess around with our hormones, including TNBC that gets hit with the same chemo.)
Millykins, you don’t have to apologise or makes excuses for your down time. You have every reason to have wobbles, THEY’RE ALLOWED. Glad you’ve got out the other side of the other night’s wobble though.
Hi
glad you’re feeling a bit better…onwards and upwards…it’s hard when the staypositive fairy bobs off nightclubbing…keep your chin up…M
big hugs and support to you, i hope its a teeny bit better having written it done. im only just beginning my treatment after WLE but just wake up tomorrow and take it a bit at a time, try not to look at the big picture yet xxxx
Depression is the worst bit about all this really. I dealt with the diagnosis , operation and chemo really well. I did the cold cap treatment so that I did not lose my hair but then the Chemo sent me into an early menopause. Along with the Tamoxifen this has made me feel so strange and in a really black place, a big dark hole.
I had post natal depression when my daughter was born 20 years ago and was told then that your hormones are very powerful chemicals. I never thought I would get depression again. I could not get out of bed in the mornings. I was so anxious about everything I could not function.I really did not want to live in that state and constantly told my hubby that I did not want to exist feeling so bad.
However after starting on the anti depressant sertraline, going to a self help support group and a referral to the clinical psychologist I am learning how to cope again and be a new " normal". I think we all must say that we just want to feel "normal " again, but our bodies have changed, our minds have changed too and we have to learn to be mindful and embrace the new person we are.
I hope you all start to feel very better soon. Take good care of yourself and be kind to yourself. love Tracy x
Hi. Glad you are feeling better. I too have tnbc. This is my first time on this site and am so glad I have found it. I have felt very isolated with this type of secondaries as everyone I have met is hormone receptive and so their treatment is different. I have had 15 chemo treatments so far. The secondaries are in chest cavity. Will go on live chat shortly xxx