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Any triple negative survivors out there?

hibbittregina@yahoo.com
Member

Re: Any triple negative survivors out there?

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.       

Dee1945
Member

Re: Any triple negative survivors out there?

Wish I could sign this too. I live in California, United States.

Whitfield
Member

Re: Any triple negative survivors out there?

Not reduced but REFUSED.  Predictive text!

Whitfield
Member

Re: Any triple negative survivors out there?

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

familytree
Member

Re: Any triple negative survivors out there?

How disgusting they have told you it's only newly diagnosed woman who won't get the drugs! Absolutely criminal...I'm sure depriving anyone from life saving drugs would be deemed murder in a European court of appeal. I'm horrified to hear this...shame on them! I will share this petition for sure. 38degrees seem a good site for causes like this too. Hope you are all doing well. Sending love Lorna x
Whitfield
Member

Re: Any triple negative survivors out there?

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.

 

Px

1852
Member

Re: Any triple negative survivors out there?

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

Barbara
Member

Re: Any triple negative survivors out there?

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. 

1852
Member

Re: Any triple negative survivors out there?

Hi Pam good to read your post on tnbc site beamers not very active now is it hope they all getting on with life like we are I come on forum now and again mainly to c if I can help anyone I am like you and am thankful for each day lots of love DEN
bel
Member

Re: Any triple negative survivors out there?

Pam, what a lovely and heart-lifting message you sent!
Love to you & everyone else.

Whitfield
Member

Re: Any triple negative survivors out there?

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.

 

Pam x

Dawny 40
Member

Re: Any triple negative survivors out there?


Hi im Dawn and was diagnosed with tbc stage 3 with node involvment. Had masectomy then 6cycles of chemo and 15 sessions of radiotherapyy. I was advised to see genetic counsellor and found out i had brac1gene. I then had decisions to make and also having 2 daughters impacted on them too. I decided to have ovaries and fallopian tubes removed and would then have 2nd masectomy. However after op a tumour was found in left ovary . Stage 1 ovarian cancer therefore total hysterectomy followed and am now having six rounds of chemo! Fortunately with the carboplatin you dont loose your hair. I did the cold cap with the tbc chemo and combined with Lush "new shampoo bar" kept my hair! I am so glad i had genetic testing and opted to have profalatic surgery as was told the type of ovarian cancer i have would have spread before i had symptoms and we would be in a different situation now.next step finish chemo and then second masectomy planned for january then hopefully back to normality! I do get scared and worried about what the future holds but staying positive, having a fantastic husband (who i have falling in love with over again!) 2 lovely daughters and brilliant sister family and friends! Would love to hear from anyone out there who is in the same situation as myself as believe its not very common to have tbc and ovarian cancer within acyear of each other with the brac1gene thrown in for good measure! Dawn x
suzanne2
Member

Re: Any triple negative survivors out there?

Hi all hope u are all doing ok, I now have a covering of hair, very think but it's hair and my eye brows are starting to come thro yay, my love to u all xxxx
bel
Member

Re: Any triple negative survivors out there?

Hi Roseanne,
Good to hear from you. Yes, it is a bit of a double whammy having TNBC and then finding out about BRCA. Mine happened a bit differently to yours by the sound of it: when I was diagnosed over 13 years ago we had no family history of BC so my doctors assumed it was just bad luck. Then, years later, when I'd been told from my Drs that the risk of my original BC returning was almost negligible, a couple of my cousins got BC, and I eventually had my BRCA gene confirmed a year ago, 12 years post diagnosis. It was all pretty shocking/upsetting to begin with (not least cos I thought my BC journey was pretty much done with), but I've gradually come to terms with it, and while going for check-ups leaves me fairly terrified the rest of the time I am mostly ok. And it's better - for all of us who have it - that it gets discovered, as then we have options. If I hadn't found out I would have just kept on being screened at the normal level, but now I've added MRI & regular ovarian checks, until I have the ops, which I'm fairly certain I will at some point in the not too distant future, but just not quite ready yet for various reasons. Anyway, I hope all your treatment and ops go really well. And please remember (everyone) that you can survive TNBC. As I've said in earlier posts, I found it helpful to focus on the positive stories out there and not pay too much attention to the negative ones - or you can end up driving yourself crazy.
Best of luck,
Bel xx

Whitfield
Member

Re: Any triple negative survivors out there?

Whitfield
Member

Re: Any triple negative survivors PLEASE SIGN THIS

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.

 

share please.

 

pam x

 

Whitfield
Member

Re: Any triple negative survivors out there?

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.

 

Pam x

Roseanne72
Member

Re: Any triple negative survivors out there?

Hi Bel,

 

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

jinny2611
Member

Re: Any triple negative survivors out there?

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

jaxw
Member

Re: Any triple negative survivors out there?

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

Catz
Member

Re: Any triple negative survivors out there?

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 

Amanda10
Member

Re: Any triple negative survivors out there?

Hi everyone
The hospital I was treated at is university hospital Stoke on Trent. My tumour was very large also I had one node involved, a micromet. The surgeon said a very some amount was found in the node so he didn't feel it necessary to do full node removal. I never look at statistics , I know of ladies who are fine that had lots of node involvement and others who had none and had reaccurances. I just try to keep busy everyday to occupy my mind. Xx
janet-p
Member

Re: Any triple negative survivors out there?

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.   

suzanne2
Member

Re: Any triple negative survivors out there?

That's a very good way of looking at it, no one knows what's ahead but god willing we will all be ok ladies xxxx
myliljaiden
Member

Re: Any triple negative survivors out there?

Hi I was too just diagnosed with triple negative in August. I am having a double mastectomy this Thursday then chemo for four months. I am new to this whole thing but from what I have read and heard if ur lymph nodes are negative then you have a better success rate for survival. Because we are triple negative studies show that we have a higher chance of recurrence. I too was driving my self crazy ready and learning about his monster but one doctor said ....yes we can go over numbers and statistics 80/20 or 70/30 or even 1/100 but how would you know which number you are. You can be the 70% success or 30% fail there is no way of telling. So yes I do read but only so that I am more knowledgeable when speaking to the doctors about my condition but as far as statistics I don't apply them to my life any more I fill my self with positive thoughts people and stay determined for my children who are 6 and 11.
suzanne2
Member

Re: Any triple negative survivors out there?

That's good news about your results Pam, I didn't ask too much as it worrys me, he didn't say anything too negative really but I am still obviously very worried about it. But he is right I have to try and move on with my life instead of thinking every ache and pain is it returning!! Where are the hositals u all go to girls, I went to nevill hall in Abergavenny xx
Whitfield
Member

Re: Any triple negative survivors out there?

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.

 

sending love.

 

pam x 

suzanne2
Member

Re: Any triple negative survivors out there?

Hi all, Dee so glad to hear your daughter is doing well, she's so strong.
Went to see my consultant yesterday he seemed pleased with everything, he just said no tablets as it's not fed by anything, told him I have been stressed but he just said I need to get on with my life cos no one can predict the future I could get run over by a bus lol. He did say it's got a high chance of coming back in the 1st 2 years then the chances drop dramatically but I said I have to get thro the first 2 years, scares me so much!!! He wants to see me in December just to see how I'm coping then it will be yearly mammograms. Pam have u had the results of yours yet xxxxxx
Dee1945
Member

Re: Any triple negative survivors out there?

  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.

Dee XX

Amanda10
Member

Re: Any triple negative survivors out there?

Morning everyone
Sorry to hear that you will be made redundant Pam I'm hoping that much better things are on the horizon for you xx
Suzanne my eyes watered it drove me crazy as I normally wear contacts so had to go back to specs. You could try snotears ( I work in opt) . Mine stopped when my eyelashes started to grow back. Hope your appointment will go fine Tom . If it's anything like mine they will check your skin after the rads and see you in 3 months.
Talsgee I hope you are doing ok with your chemo. It isn't easy but you will get there . I just have to plan each day to make sure I'm doing something to keep my mind active. If I don't I get quite anxious I'm hoping in time this will lessen.
Dee how is your daughter doing ?
Amanda xx

Whitfield
Member

Re: Any triple negative survivors out there?

Good luck Suzanne.  Let me know how you get on.

 

pam x

Whitfield
Member

Re: Any triple negative survivors out there?

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.

 

Px

suzanne2
Member

Re: Any triple negative survivors out there?

Aww Pam I'm sorry to hear about redundancy, the worry is awful isn't it, I got appointment with my consultant tomorrow and I'm absolutely terrified as to what he's going to say xxxx
Whitfield
Member

Re: Any triple negative survivors out there?

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.

 

Pamx

 

ps hope all the ladies here are doing okay.

 

 

Tania786
Member

Re: Any triple negative survivors out there?

Thanks Suzzane.
suzanne2
Member

Re: Any triple negative survivors out there?

Meant to say eyes are worse outside, and amanda how are u xx
suzanne2
Member

Re: Any triple negative survivors out there?

Hi all I've had a bad week been stressing so much it's so hard at times. Did anyone else suffer with watery eyes? Mine are dreadful constantly watering at the moment, if so any suggestions on what I can use please. Pam how are u? Dee how is your daughter?
Talsgee sorry to hear about your diagnosis but no lymph node involvement has to bee good, it's a horrible time but the girls on here are a great help xxx
Whitfield
Member

Re: Any triple negative survivors out there?

http://www.england.nhs.uk/wp-content/uploads/2015/09/ncdf-list-sept15.pdf

 

Bad news today for BC suffers.  Do lobby your local MP about drug funding.

 

px

Tania786
Member

Re: Any triple negative survivors out there?

Hi ladies, I'm 36 yrs old and I was diagnosed with grade 3 TN bc on 13 July 2015. I had lumpectomy and SEN, tumor was 3cm with clear margin and lymph nodes were clear. I am now on 6 FEC-T chemo. I had my first one 2 weeks ago and now due to have the 2nd cycle next week. My onco didn't say much about the Triple negative. Reading posts here is reassuring but there are times when i worry so much about what if... I have two boys 6 and 12. I just want to find out how you ladies distract yourselves from getting all these negative thoughts. I'm trying to be positive but it's hard at times. Does Having clear lymph nodes means better survival chance? I know i should be just thinking about treatments at the moment but sometimes I worry about recurrence. Are there any treatments if it recurr? Would really appreciate a response and any tips on how to stat positive abd get on with life. Thanks
suzanne2
Member

Re: Any triple negative survivors out there?

Ah that fab amanda, I would love to meet up but I live a long way from Manchester, I live in Blaenau Gwent in South Wales so will probably give it a miss but thank u so much for asking. Lovely to hear of u off on your travels, sounds amazing xxxxx
Amanda10
Member

Re: Any triple negative survivors out there?

Hi Suzanne
Glad you are keeping busy I've found that is the answer. I'm going to Dubai with my daughter in 2 weeks always wanted to go and then lanzarote with partner for a week . Also a few of us ladies on this forum who started chemo together are having a meet up in September so that will be nice. Your welcome to come along think it's going to be Manchester . I'm just in m and s having a snack and drink being very brave without pixie but no funny looks so far :))) x
suzanne2
Member

Re: Any triple negative survivors out there?

Hi amanda thats made me laugh calling your wig pixie. Am doing ok although I'm still worrying a lot of the time just trying to keep myself busy. I got an appointment with my consultant a week Monday and that is stressing me out wondering what he is going to say, just hoping its a follow up post treatment. Have u anymore holidays booked before u go back to work? I never thought I would say thus but I can't wait to go back to work xxxx
Amanda10
Member

Re: Any triple negative survivors out there?

Hi Dee
Glad to hear your daughter is half way through I was thinking how she was doing. I'm pleased she is able to work through it I have been off work since I was diagnosed last October . I will be going back end of October and am fitting some holidays in before I do lol. This week I have put pixie away yipeeee ( that's my wig by the way ) I have about inch on the back half inch on the top. It's come back really dark , thought it would be grey as I'm 48.
Hoping everyone else doing ok xx
suzanne2
Member

Re: Any triple negative survivors out there?

Ah dee how amazing is your daughter, sounds like she is doing so well n I wish her all the very best xxx
Dee1945
Member

Re: Any triple negative survivors out there?

Hi ereryone,

  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.

OOO's Dee

Whitfield
Member

Re: Any triple negative survivors out there?

Yes, yearly if those take yesterday are okay.  I do t think you see someone yearly just get the mammogram.

 

love PAM x

Amanda10
Member

Re: Any triple negative survivors out there?

Well done for getting through your treatment sue xx glad you got through today ok Pam xx when is your next check up will it be yearly now ? Hope everyone else doing ok xx
Whitfield
Member

Re: Any triple negative survivors out there?

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

suzanne2
Member

Re: Any triple negative survivors out there?

Well all my treatment is now finished so trying to remain positive, very sore at the moment. Pam how did u get on today been thinking about u.

Sue xxx