Hi
I am so angry with myself. I had a mastectomy 3 weeks ago for a local recurrence. All scans okay (but as Oncologist likes to point out ’ scans don’t show the small flecks of cells that could be around your body!!!'. I am having no more treatment ‘for now’, we are waiting to see what happens.
The point is I looked on the internet at some new drug called Lapatinib as I am Her-2 positive even though I still got a recurrence after 17 herceptins (sorry to point this out for you girls on herceptin). I am ER and PR negative. I keep seeing it say poor prognosis, I just can’t help it, I wish I would learn it gets me down to think that I won’t see my 2 year old leave school.
I have been really positive since my mastectomy and have been quite proud of myself how I have coped, not even cried this time and thought ’ sod it I will deal with it if it comes back’ as Oncologist says it probably will.
Has anyone got any positive her-2 positive stories out there for me who like me have had a recurrence and still going strong. I end up having to do this every time to make me feel better. Nobody understands unless they have gone through it.
I hate the internet, feel really low now. This sounds awful and I do not mean to offend anyone but sometimes I wish that if it was going to get me that it would just get it over and done with so I could fight it than wondering if!!! Sometimes I think it would be easier to get knocked over by a bus than wait for my ticking bomb to explode. At least my family could move on and not have to wait for ‘next time’.
Can you tell I am having a really bad day, determined not to cry but feel like I am slowly losing it.
mandyxx
PS I just felt I needed to tell someone how I am feeling, I hate being strong, want to go to the top of a mountain and scream!!!
Hi Mandy
I sorry to read thst you are having a really bad day, you may find of interest Breast Cancer Care telephone support group which offers you a chance to get together once a week to talk with people who’ve been there. Linked together by phone in comfortable surroundings, you can discuss the practical and emotional impact of living with breast cancer. The groups are free (we pay for the phone calls) and as long as you have access to a phone and have a quiet private place from which to call, you can join us from anywhere in the UK. There is also the live chat session every thursday between 9pm and 10pm. Here you are able to share your experiences and feelings with other people in similar situation to yourself. This session is run on-line by a trained facilitator and a Breast Cancer Care nurse. For more information about these services please telephone our helpline on 0808 800 6000 (Mon-Fri 9am-5pm and Sat 9am-2pm) or email: <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> I hope you find this helpful.
Kind regards
Katie
Sorry I can’t offer you any positive her2 sucess story as I was her2 neg. I can only offer you the advice given to me by a friend at the start of my journey - her daughter had leukemia years ago which was complicated by her being Down Syndrome but she is now about 14 years clear … what she said to me was everyone’s journey is individual, fight like hell, beleive you will beat it and above all else don’t listen to the horror stories. Difficult I know not to read something negative and think OMG that is going to happen, bits of me are going to fall off and I am going to be dead by the weekend (sorry if that sounds harsh but I think we have all probably thought along these lines at some point). Every day when I go to get zapped and come out a little more burned I just tell myself that it’s another day that I have kicked this nasty little disease where it hurts… I’m bigger and better than cancer and it won’t beat me.
Hope you manage to find something positive to cling on to and go out there and have fun with your 2 year old… I’m stuck with an 18 yr old so I don’t get to go to the park anymore.
Hi i havent had a recurrence but come and join my gang, my prognosis is not good ive looked and been told but im going to live till 120 to prove all of em wrong!!!
Hi Millie
When i was first diagnosed last year, a friend who is an obs/gynie consultant told me to ignore anybody who had cancer stories or treatments they had heard of if it was over 12 months as things were changing so fast in the field of breast cancer that what was new last year could be out of date by this year!! That kept me going and when you read everything available it seems to be true. Good luck.
Sharon
Hi Mandy
I was so sorry to read your post. Before I go any further I should say I’m triple negative and still going through treatment (my first).
Whilst I think it’s useful to have info - the problem is that it’s also very important that you stay positive so if you are just going to depress yourself then the answer is (in my opinion) not to look … to explain further …
What I am going to say now will seem very trivial but there are some similarities …
I used to weigh myself daily - it ruined my day. If i lost weight then i would thinkI had room to eat and then put it back on and if i gained it would ruin my day. Weighing was counter-productove to my end goal. One day (don’t laugh) I broke the scales ! so I had to chuck them out. I have been far happier and thinner since!!!
I’m not suggesting you should break your computer but perhaps you could give yourself a research-free week and see if you feel better … if you do then you’ll just have to chnage your habits …
Perhaps you could consider how much time you are spending doing research and what enjoyment you could have got with that time doing other things - like playing with your two year old?
Taking what you and others have said - you’ve just got to hope for the best, treat yourself well, enjoy each day and know that the scientists are beavering away so that in the event that you ever were to need anything else it will be far more advanced than now so all this research you are currently doing will be out of date very soon anyway …
I don’t think it’s a question of being strong or not … it’s just a question of what you focus on … we all want guarantees and there isn’t one for any human being under the sun! … we are more aware of it than most … but then we can benefit from being reminded of our mortality and decide how we spend our time … many people just drop dead of a heart attack with no chance to make any lifestyle changes
this isn’t easy on many levels but we just have to go with the flow and hope for the best
hope this has helped rather than offended you
glad you let it all out! well done!!!
lots of love
big hug >>>>>>>>>>>>>
FizBix xxxx
Hi everyone.
Thanks for all your advice and support, I am feeling a bit better today. My Mother in law is coming over this morning so she will occupy me with all her busying around… The problem was that my husband was working nights and its the first time I have been left alone day and night and my daughter was at nursery. He is now off for a week so really looking forward to it.
I know I should enjoy every day and focus on my daughter and go with the flow, I have been telling people on this forum to enjoy life and worry about things when you have to. I think it was just a bad day yesterday. I wasn’t even looking for prognosis info, I was just looking at the new drug trials and it was in there staring me in the face.
I am going to try and think about how lucky I am that it hasn’t spread past my lymph glands unlike others in the forum. Thank you for listening to me have a paddy, I don’t want to really tell my family about my bad days as don’t want to bring them all down with me.
Lots of love
Mandyxx