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Triple negative reoccurance survivor support

25 REPLIES 25
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Re: Triple negative reoccurance survivor support

Hi Kristina,

I've only just seen your post about offering some support to your friend. Yes, of course.

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Re: Triple negative reoccurance survivor support

 

I was diagnosed with triple negative in left breast in 2010. The cancer has come back but as a breast cancer HER2 positive...a new cancer. I am wondering if anyone has had similar experience and what treatment surgery etc. they did?

Thanks,

Mary

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Re: Triple negative reoccurance survivor support

Wonderful that you are doing so well Bernadetteh.. I have a friend who has recently found her first reoccurrence of tnbc and I am looking for someone who would tell them story of survival.. Would you consider making contact with her please? When I went thru treatment for her2+ I found survivor stories so helpful.. Thank you
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Re: Triple negative reoccurance survivor support

Hi all,

Following on from the previous comment does anyone follow a specific diet? Ketogenic/vegan? I am aware of the juicing raw a lot but wonderered what you guys all do?

my neighbour and myself both do clean diets, juicing, minimal sugar, etc. His skin cancer was looking good to only discover the oncologist found 7 more. 

This put me back a few steps so wanted to find out from you guys what you all do?

Arnie x

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Re: Triple negative reoccurance survivor support

Bernadetteh - when I asked how you were a few months ago I was actually confusing you with Tiffany (tiff71) who so inspired me with her juicing etc. Now I remember that it was you who I tried to send a link to as you said you could not do chemo. Although it sounds as though you are doing well, I have found CHRIS BEAT CANCER & KRIS CARR & THE TRUTH ABOUT CANCER all to be very helpful.
Marina
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Re: Triple negative reoccurance survivor support

Thank you Sue. X

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Re: Triple negative reoccurance survivor support

Hi Pam, I have just seen my onc last month for my check up and she told me and I have read also that the stats is from the date of diagnosis.

Best wishes to my tnbc sisters. I was diagnosed two and a half years ago and still am quite anxius of every twinge but try mindfulness and distraction to help

Sue x

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Re: Triple negative reoccurance survivor support

Horrid so many of us are getting this decease.  I'm due a mamogramme on 24th August and getting nervous as the remaining breast where I have cancer is very lumpy and I'm just not sure whether I need to worry or not.  I've lymphodeama of the remaining breast so it keeps changing.

 

Does anyone know from the stats perspective when the clock starts?  

 

I was diagnosed August 14, with chemo, then surgery then rads.  Is the date from surgery or end of treatment?  No one seems to be able to tell me and I need to know as the first 18 months are the high risk for reoccurrence.

 

pam x 

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Re: Triple negative reoccurance survivor support

Hi Bernadette

I have read a lot of the posts. I have had my MX so have been doing exercises frantically. Although I have a very good diet I am trying to improve it even further. 

I was a little annoyed at surgeon telling me before I went down for surgery that I had node involvement. Also at appointment after surgery he said it is grade 3 cancer following initial comment of precancerous cells. But I understand he may have said this to calm me but also things may have changed and samples from biopsy not good. 

I am in an indifferent position. Sometimes cry, sometimes just get on with things. I can't change things.m

i have oncology this week so will find out what chemo i will have if my body is up to it. I just feel it has not recovered as it was only just over a year ago I finished. 

I have someone like me now that is helping which is good. 

I am dreading everything but know it must happen to help. Wish you knew for def it would work. 

Your story is really helpful as you clearly have a lot of experience. 

 

in short I think I am ok and will join a chemo thread once that starts. 

Thank you for popping back in and seeing how I am. 

Arnie x

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Re: Triple negative reoccurance survivor support

Hi Arnie, sorry I haven't been on here for some time as I've been so busy with work. Have you been able to read my posts? I hope you're ok?

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Re: Triple negative reoccurance survivor support

Which is in pink ....

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Re: Triple negative reoccurance survivor support

Hello Arnie,

 

if if you click on Beth's name which is link you can then see her 80 posts.  So glad you are now in touch.

 

good luck xx

 

pam X

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Re: Triple negative reoccurance survivor support

Hi Bernadetteh,are you able to let me know where your journey experiences are documented so I can take a look if you don't mind? Rather than asking questions that perhaps you have already answered? Arnie x

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Re: Triple negative reoccurance survivor support

Hi Bernadetteh, I am so pleased to hear from you. I have been a little quiet this week as I am on holiday before I have surgery and await further results and decisions. It is so good to hear the positive stories so thank you so much. I have just over a week till surgery and nightmares are starting. However, it has been great for my anxiety being surrounded by fields, birds, coast, and friendly animals and of course family. Thank you for replying. It is really appreciated.  Tips for anxiety would be welcome! Thank you to you all. Arnie x

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Re: Triple negative reoccurance survivor support

Hi Marina, I'm eating healthily and I try to walk at least 4 miles a day. I could do with losing weigh but its going off very slowly but I do have a underactive thyroid which is still being tested for my optimum dose of Meds. I'm in great health and feel better than I have for a long time. NED so not bad for someone who was diagnosed with aggressive grade 3, 15 years ago. Never give up the fight! xx

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Re: Triple negative reoccurance survivor support

Hu ladies,
Sorry to hear your news Arnie. I am still going through chemo (on 7 of 😎 and 3 lumps have appeared in same place. They assure me they are not cancerous but say they are not right and need to test further after removing. Am waiting for op date.
Bernadetteh I often think about you as your story inspired me. Are you still juicing and taking all the supplements??? Hope you haven't lost more weight.
Marina
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Re: Triple negative reoccurance survivor support

Thanks Beth. Arnie needed to hear your story.  Pam x

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Re: Triple negative reoccurance survivor support

Hi, I think I may be the lady you mentioned. Yes, I have had TN four times since 2002 and this was a cancer that was misdiagnosed in 2001. I'm presently in perfect health, working full-time and my Onc has put me back on 6 monthly as Im doing so well. Please never give up hope ad yes their are a lot of bad news stories, but please remember all the good news ones also.

Good Luck with all your treatment lots of love xxx

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Re: Triple negative reoccurance survivor support

Hi, I think I may be the lady you ahve mentioned. Yes, I have had TN four times since 2002 and this was a cancer that was misdiagnosed in 2001. Im presently in perfect health, working full-time and my Onc has put me bak on 6 monthly appontments as Im doing so well. Please never give up hope ad yes their are a lot of bad news stories, but please remember all the good news ones also.

Good Luck with all your treatment lots of love xxx

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Re: Triple negative reoccurance survivor support

Hello Arnie,  we are with you and I'll keep an eye for your posts.

 

sending love.

 

px

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Re: Triple negative reoccurance survivor support

Hi Pam

thank you for your words of encouragement and advice where to go. I am new to the forum so finding my way around is new yet I will lokk at what you have said.  I have contacted someone like me and although noone exactly the same there is someone who is talking me through things. Thank you. 

Arnie x

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Re: Triple negative reoccurance survivor support

I've posted in any Triple Negative Survivours out there thread to try to get you some support.  Do try to look for it.

 

pam x

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Re: Triple negative reoccurance survivor support

Hello Arnie,

 

Im in a couple of other groups one for TNBC and the other is Sept Sunbeamers.  I recall a lady who had TNBC four times but was something like 12 years since first diagnoisis.  What I'm trying to say is take a look at those threads and try to think as long as it's not gone elsewhere there is hope for beating it.  

 

There is also the part of the web site to contact "people like me".  You can also phone them.  

 

I know now you're going through what I believe to be the hardest and darkest period because to have treatment is hard and then if it comes back that really takes the wind out of your sails.  You are not alone and it's not the end.  You will get treatment and with fortune it will get rid of it forever.  This is my wish for you.

 

pam x

 

 

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Re: Triple negative reoccurance survivor support

Hi Pam

Thank you for replying. I am hoping second round will attack it. Fingers crossed. 

Appreciate the love and hug

fully reciprocated

Arnie x

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Re: Triple negative reoccurance survivor support

Oh Arnie I'm so sorry to hear you are unwell again.  Like you I was diagnosed Sep 14 and panic each examination of lumptectomy scar area.  Mine was in nodes so I had full clearance at time of lump removal.  Had 8 chemos first, surgery then 20 rads.

 

all I can say is I'm sure there are some good stories out there with reoccurrence being beaten.  You've had good news with CT scan so let's hope this next round of treatment get rid of it altogether.

 

im sending you love and a hug.

 

My next mammogram is in August and I'm scared so much.

 

pam x

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Triple negative reoccurance survivor support

Hi all, I am in a bit of an emotional pickle and need to hear some positive comments. I was diagnosed with TNBC sept 2014.  Had lumpectomy with good to adequate margins and nodes clear. Followed by Fec and paxlitaxol and tgen radiotherapy. Had first mammogram oct 2015 with NED. Then found lump on scarctissue getting bigger. It was thought to be fatty necrosis but on ultrasound shadows found. Following two biopsies, of which not believed to be good ones they have found pre cancerous cells. I am due for full node clearance and mascetomy right in 3 weeks. It will then be decided if I need a second round of chemo depending on the findings. I had a CT and bone scan and they were ok, which is a relief. 

 

I am needing encouraging stories, is there anyone else who like mecwith a second round has now had NED for the 5 year margin. I fear that this is it now and within a year or so it will return. I know that is is a possibility but is there anyone out there where it hasn 't. 

 

I need encouragement. I know I will have it hear but finding others in a similar situation  is comforting, is there anyone like me out there who are now more forward. 

Arnie x