Hi ,I'm a triple negative survivor My surgery was a Lumpectomy04/25/2014 I had 4 lymph nodes removed.My surgery was diagnosed as stage 1 grade 3. I have made the discovery that having a postive attiude every day and appreciating the clincial trails, nurses,doctors and the great support groups helped me keep my head above water. I hope you are aware that 5 years ago the medical research teams didn't know how to treat TNBC. It is quiet overwhelming every day being in pain and falling behind in bills and being denied by my insurance company for payment for rx.And my home went into foreclosure I discovered who really lived up to the defintion of friends. I met a New ME. And stronger and more confident than ever. As I answer you I remember how lonesome I felt at times but I woke up every day to see another day that God Had Made and I can rejoice in it.. You will learn that hair nor breast define you or me.Remember never be ashamed of the scars that life has left you with.A scar means the hurt is over,the wound is closed,you endured the pain and God has healed you ! And never ask why !!! why not you. The road is rugged and long but you will make it. As the renowned author Maya Angelou wrote a book titled "WOULDN'T TAKE NOTHING FOR MY JOURNEY NOW" and that my attiude now.
Yes, if any of us need these drugs we will be reduced I believe. Shocking hence need to push this into the open and get people to sign.Pam
Yep we need more encouraging stories.
wRote to MP re the drugs. Wing withdrawn and got a curt response. At least he know how I feel. I do hope everyone is sending objections to their MP and signing the petition. We are only strong as a group of we keep together on these issues and must remember those in the secondaries group.
Flu jab yesterday and heath check. I'm in all of the good ranges except slightly higher than the 25 BMI at 26 so must try to loose a little weight. Today have bad sore throat.
PLEASE DO SIGN THE PETITION. Link below.
What a great post Barbara you are one strong lady it's great to hear stories love me yours think the hammer bit is brill I will try that I have yet to get my diet and exercise sorted was walking every day hubby as just had a second marjor op first when I was having chemo so it's been a roller coaster for both f us forum kept me going
the support is second to none so as he recovers I must get sorted I also have grandkids and don't want to leave them yet Xxx
Yes - I am sure there are plenty of us! I had breast cancer diagnosed in January 1996; it was a large tumour and plenty of nodule involvement under the arm (I think it was 26 out of 42 nodes were affected. I had a mass of treatment, starting with a mastectomy, followed by a lot of chemotherapy incuding some associated with a trial (the trial was later abandoned) and then radiotherapy. To my astonishment, and I rather suspect that of the medics involved, I have not had any recurrence. I was of course absolutely terrified, and I think the fear was the worst thing of all. What helped for me was an absolute determination to do all I could to survive; I had several children, down to aged 10, and so much to live for with a significant and very interesting career. So I focused on how to keep the fear at bay, and how to do what I thought would help - building in as much walking as possible, and eating healthily (though we did that anyway, and I did not do anything at all extreme but just made very sure I always ate a lot of vegetables and fruits of various colours), and above all kept my spirts up in the dark times of night by visualising being a miniature carpenter, hammer in hand, checking out all my cells and bashing any cancer cells up and down bones, liver and everwhere else. I am now a proud grandmother of numerous children, happily busy in retirement, and still thrilled to be alive and well, even when it is cold and raining. I decided to be sure to do all I could to enjoy, in whatever little way, whatever life I was able to live, and I still do. I wish the same for you and for all others who receive this alarming diagnosis.
Brave ladies here.
I'm TNBC and had genetic testing which came back negative. I've finished treatment and am trying to forget the whole journey but it has taught me some good stuff like value your time, friends and family. So I suppose I'm trying to stay positive. I do panic at every turn but suppose this is normal.
im so very proud of all the ladies and some men that go through the treatment process and tackle this thing head on. We are stronger than we think.
look into the sky each morning and think this is another morning and I'm living.
I still have pain and returning cording but am now accepting this is now normal for me.
loving you all.
See the Secondary part of this site where there is a web information re singing parliament petition re the recent removal of BC drugs from the Cancer Fund
if you Google parliament petitions UK you can get to the site and then search for Cancer. It's a new petition with only 1'200 signatures so we need to sign and spread the word. Shocking some people will not get these live extending drugs.
Oh, Roseanne and Bel you have a lot to deal with emotionally and physically but there are survivors out there so please don't give up hope. Horrid journey you have but you cando it.
BC is horrid and being TN myself I know how are it is to get your head around it all 😬I've finished treatment but my mind is still in turmoil and to boot I have some cording coming back six months post op! It's a long road we have to travel and new drugs are emerging.
I wrote to my local MP about the removal of Breast Cancer Drugs being removed from the Cancer Fund Grant but got a pretty basic reply saying those in these drugs already will continue to receive them but not any new suffers. I replied saying that was unfair.
I DO HOPE EVERYONE ON THIS SITE IS DOING SIMILAR. More funding is needed for those needing life extending drugs.
I'm sending love.
I hope you don't mind me messaging you, I noticed you recently discovered you have a fault on the BRCA1 gene yet you are a 13 year survivor 😃 this has given me the hope I need as I also have TNBC and recently discovered I have a fault on the BRCA2 gene. As well as the chemo and radiotherapy I will now have to have a double mastectomy and my ovaries and Fallopian tubes removed as a prevention. Until I read your post I hadn't noticed if anyone also had the same as us. I was devastated about having TNBC and this gene fault and I think it would be beneficial to read more stories like yours, it certainly gives us hope 😊 good luck with whatever decision you make about your results.
Best wishes to you from Roseanne xx
Oh so glad to hear from you no I haven't got no messages I'm so glad your doing good I must admit I was worried thanks for the message xx
Hi Jinny. Just wanted to say I haven't been ignoring your private messages! I have been replying to them all, but I don't think you seem to be able to see them! It's a shame, as I would hate you to think I am not responding. I will get on to BCC and see if they can work out what's gone wrong. In the meantime, hope you are ok. X x x
Hello Talsgee. I was diagnosed with TNBC in March 2105, big lump 4.7 cm, no lymph nodes positive . Had 6 rounds of FEC-T, followed by bilateral mastectomy then 3 weeks of radiotx. I have 2 young daughters and for the first year had very negative thoughts. I am glad to say that 18 months since diagnosis, although i still get these worries i now dont dwell on them and try get on with the life I had. Being back at work has helped. I think I am a much more relaxed person now and try to enjoy everyday. Minor things dont worry me as they use to. This will come in time, for you it is very early days. Try to be positive but dont beat yourself up if you feel down, it is perfectly normal. Your life has been turned upside down and you are going through some pretty toxic treatment. i scared myself silly reading about TNBC , now I dont bother, it is all statistics but you are you . Get through the treatment and you will gradually start to feel less anxious, though I am sure it never goes completely. Take care xx
Hi, The hospital I had my treatment at (Oldham Hospital) is starting a moving forward group later this year organised by the breast care nurses. If you think this will help you ask whether this will be available to you at the hospital you attend. I've had a rough year with being diagnosed in August 2014, had the lump removed on my birthday in September 2014, 6 lots of FEC-T chemo from October 2014 until February 2015, radiotherapy for 4 & 1/2 weeks in March and April, back to work in May after having 6 months off for treatment. I've just had the yearly mammogram, all ok. I do try to think positively and I think the moving forward group will help me to keep focused.
Suzanne, yes, I had phone call from hospital as away at the moment and they said scan was normal. No one has said to me high chance of it coming back in first two years! I know I was to,d if you get a totosl medical response to the chemo the chances are much better than those with still love cancer cells. Mother hospital gave me chemo first, then surgery then rads. When they looked at the lump they took out and the nodes they found the nodes had crystallised which is good and after looking at the lump there was no clear margin as they couldn't find any viable cancer cells. I know when gold willing we hit the first year timeline with cancer our rate drops to that of normal people of our age. My lump was 31mm x 21mm which the advanced breast cancer nurse said was very big giving me the jittery. Just keep checking those boobs and enjoy each day. We are all different and some will make it. Like is a game of chance for everyone.
Tracy is doing pretty good. She went on a short trip for Labor Day weekend. Rustic cabin in the mountains with a friend.
She had her 3rd of 6 triple chemos and is due for her next one in a few days. She has committed to finishing out the 6. This time around has been different. 2 years ago the chemo hit her hard in the chest, hair and nails. This time it is mostly the bones. Bone pain has been intense but eases enough in a few days that she can go on.
Fortunately she has lots of PTO time (paid time off) built up that she will take between now and the first of the year. Working enough to keep up only. She also has a great staff that work dilligently to keep the numbers up. She has remained at the top of her company through all of this.
She is much more balanced in her time for herself and her time for work.
Our prayers are with you all as you go through you own road to health. Your support has been invaluable to me. Has helped me help her.
Using sun protection 50 but skin still redding. Is this normal? Been wearing bra and two tops plus the cream but walking about out in the open a lot.
Hi Suzanne, I'm okay ah but constantly worrying it will come back. Such bad news the drugs. We g withdrawn. We do t deserve to be treated like this.
Yes, I had runny eyes. Thing is not to touch time as it makes it worse.
just heard that I'm gonna be made redundant which is another blow but I'm pulling through.
ps hope all the ladies here are doing okay.
Bad news today for BC suffers. Do lobby your local MP about drug funding.
Our daughter is half way through her chemo and has commited to finishing out the next 3. Her liver tests came back great and her hair is starting to come back in. Not sure if it will fall out again or not. She doesn't seem to mind. She only wears a scarf if someone around her feels uncomfortable. Like a young girl at a store she was shopping in.
It hasn't been all roses but she has been really fortunate in a lot of ways. She has been able to continue working, taking a day or two PTO days once in awhile. Her company has been very supportive and she has lots of wonderful friends, family and co-workers supporting her too.
We are praying for all of you as you go through the process of getting well. Kicking Cancers Butt! Warriors all.
Yes, yearly if those take yesterday are okay. I do t think you see someone yearly just get the mammogram.
love PAM x
Been for first mammogram but have to wait for a couple of weeks for results! There were problems with the computer being flooded so had to go twice but hey it's done. It's a bit scary when you have scars but the teams are nice and it wasn't too bad. Saw the Advanced BC nurse who checked my breasts and said I'm now to call if I have a problem. Informed me of things to look out for re secondaries like bone pain, bad headaches, loosing weight but trying not to think about that too much.
hope you all are doing well and thanks for good luck wishes.
love to you all.PAM X