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Any triple negative survivors out there?

Re: Any triple negative survivors out there?

Hi Pam/everyone
Finished my rads about two weeks ago and now I'm in sunny Majorca 💃💃I have covered up with a little scarf but have been fine. My breathing is still not quite right and am having bits of blood in my spit. Not sure wether it's the start of a chest infection will see doc when I get back. Hoping for a few more hols before I have to go back to work.
Dee I'm sending your daughter a big hug . It's such a vile thing to go through xx
Hoping everyone else doing ok xx

Re: Any triple negative survivors out there?

Ah great to heat Pam, Ivery been off 6 months so far and he said around a year. Nice to hear your all doing well xxx

Re: Any triple negative survivors out there?

Hi Suzzane, I've been off 1o months in total and now doing phased return. It's hard but good for the mental health. Stay in there and you will get through.

Pam x

Re: Any triple negative survivors out there?

Well it's been 15 month since my digonose of stage 3 had 21 nodes removed 9 positive and 2 tumours still gave wobbles but I didn't even think I would get through chemo my anxiety was unreal love to hear positives as that's all I use to look for when got digonosed take care !

Re: Any triple negative survivors out there?

Sorry it's supposed to be PAM not pamper stupid phone xxx

Re: Any triple negative survivors out there?

Hi all hope u are all doing ok. I'm still struggling at times but have been referred to a clinical psychologist. I have finished all my chemo and am starting radiotherapy today, trouble is am on antibiotics for a bad chest. Pamper how do u feel about going back to work and how long have u had off? I can't wait to go back to get some normality in my life again.

Re: Any triple negative survivors out there?

Hi Amanada, how's it going your end? I'm phasing back to work! Got holiday in Dorset booked but that's it and the weather looks like it turned 😟

Sending love.

Pam x

Re: Any triple negative survivors out there?

Oh Dee my heart aches for her as I know what she is feeling. Bone pain is horrid. I used Tramdol for this. Sounds a long horrid road but you are with her and we are here on the site. I'm due for my first year check soon and am starting to phase back to work. Life needs to go on but sometimes you just want everything to stop.

Sending love and best wishes for the remaining chemo.

Pam x

Re: Any triple negative survivors out there?

Finally, getting back to you Pam X. Our daughters doctor has in creased the chemo 6 treatments at 3 times the dose as last time with 3 weeks inbetween treatments.  She has had her first treatment and it was really rough. She agreed to 1 more at triple strength to see if it is better than the first. She has lost hair, has some nueropathy and the hot flashes have come back too. But the worst was the bone pain. She said every bone in her body hurt.

  She is getting Paclitaxel and Carboplatin this time.  First time was Paclitaxel and Adriamycin.

  The doctor said if it is that bad again he will do the remaining 4 at the lower dose but that would mean 12 more treatments to go. We will see how she does. Next treatment is Aug. 3.

  She is doing a list of things, protein shakes, mostly, fruit and vegetables capsules, no soy. Plus B6 and sublingual B12. Some other things that the doctor advised. No sugar. Very little meat.

  Continued prayers for all the gals and if I missed anything you asked, let me know.

  I gave the book recommended to me for Tracy and also a book on what to have in the kitchen for cancer patients. Think I am going to bring the cook book back till she is back on solid foods. We can try some of the recipes in the meantime.

Deena

Re: Any triple negative survivors out there?

Hi everyone
Diagnosed april13 grade 3 triple neg
4fec,12taxol,18rads
2 years on still scary at times but life is good,stay positive
😘😘😄

Re: Any triple negative survivors out there?

Hi Pam/ everyone
Well done for getting through your treatment. I'm dreading going back to work but in a way I bet it's nice to get your life back. I've just done first week of rads two more to go then treatment is over. I'm hoping to go on a few hols before I go back to work , I know I will have to cover up but feel like a break . How is everyone else doing ? Xx

Re: Any triple negative survivors out there? Jinny - grading and staging......

How are we all doing? I e just gone back to work 😟

Re: Any triple negative survivors out there? Jinny - grading and staging......

its official got my final result yesterday i am triple negative was grade 3 on biopsy then grade 1 when tumour was removed met oncologist yesterday who says it was borderline grade 2 so i would need chemo so im having Fec-T then rads at least i now have a plan ,been refered to lymphadeama clinic my L arm swollen  since iumpectomy,this is pants

 

Re: Any triple negative survivors out there?

Pam x, just found out the doctor has increased the number of chemo cycles. Dont know the number yet. She is seeing him on the 18th. Will know more after.

Deena

Re: Any triple negative survivors out there?

Fills me with hope. Pam x

Re: Any triple negative survivors out there?

That is so good to hear thank you for that x

Re: Any triple negative survivors out there?

  It was almost 2 years exactly from the first surgery to the mastectomy. But she had been telling the doctors she felt something was wrong since right after the first surgery. That same breast kept itching. It was only her repeated urgings that they kept trying new tests till they found the new one. The initial itching may have been healing.

  She feels totally clear now. Believes it is never going to happen again. I will find out the names of the chemos. She starts June 25th. The reason only 4 is because she had the mastectomy with the removal of the nipples and no node involvement. She had 2 opinions on treatment and they both said this was the right treatment.

  Wish they would leave the message we are replying to--can't remember if I answered all you questions. I will check back after the 25th. Praying for you and all the other ladies on this site. I really appreciate Bel.

  Just order a book she suggested from Amazon about Surviving TN and another I saw there. Will Post after I receive and read them.

  By for now.

Deena

Re: Any triple negative survivors out there?

Dee- so sorry your daughter finds herself here again, that seems so unfair. But she sounds positive and has a treatment plan which helps one cope. How long was it between theu first diagnoises and second?

Also wondering what type of chemo she getting as only four cycles.

I'm in remission and worry about reoccurrence a lot. I was TN grade 3 invasive with tumour 31mm and modes involved. The node removal hurt much more than the lumpectomy.

Sending love.

Pam x

Re: Any triple negative survivors out there?

Bel, I really appreciate your upbeat, yet practical advice. Our daughter will be starting chemo for the second time with TN cancer. This time she decided to have a double mastectomy. She had expanders put in during the mastectomy and she is looking very good. After chemo and some healing time she will have implants and reconstructive surgery w building new nipples. Also a tummy tuck. She finds out the 18 when her 4 treatments 3 weeks apart will start.

  We also have a neice who is a 5 year survivor of TN.

  You are right about there being sad times, I cry occasionally too. She gives herself a set amount of time to cry and worry and then she says, Now, I'm getting on with Life. She always comes back to that.

  Keep answering questions for the new gals and inspiring those of us who have loved ones that are kicking cancers behind. Thank you.

Re: Any triple negative survivors out there?

Hi Pam
Yes I did get path report. With regards to nodes it said that 4 removed micromet in one. Also although tumour responded well to chemo there was an area of 40 mm with small bits in. I was a bit upset that it hadn't all gone but bc nurse said its all been taken and having rads will help to prevent reoccurance.
She said she just saw a lady who had come in for mammogram. When she was diagnosed with tn she had many nodes involved and she was 14 years out so that raised my spirits.
Hope your hair cut goes well ... I've still got nothing 😞 . I had really long thick blond curly hair before . Thought when eventually mine grows back will go for something really funky and modern xxx

Re: Any triple negative survivors out there?

Hi Amanda, My hospital has t really said anything about stage but looking on line I can see where is was in the staging. They did tell me grade though so maybe they don't stage it anymore.

I did get the pathology report on the nodes and tumour. Did you and what were your results?

Good luck everyone with treatment and wishing you all a life without reoccurrence.

Off for first hair cut today but not sure what they can do with it as its only approx one inch long tops!

Pam x

Re: Any triple negative survivors out there?

Hi everyone
Hope you are all doing ok. I finished chemo 9th April, had mastectomy 5th may (1 pos node) decided to wait a while for reconstruction. I am due to have 3 weeks of rads starting 22nd June.
I did ask what stage / grade I was. They said it was grade 3 because tn but said that they no longer stage it . Not sure why or if that's just at the hospital I was treated but they said its of no value to do it.
Pleased that you have all the treatment behind you now Pam . Is everyone else still going through treatment,
Amanda xx

Re: Any triple negative survivors out there?

Hi Jinny - I'm stage 3 so would also like to hear from any long term survivors. I just finished treatment in May 15 so am in early remission.

Pam x

Re: Any triple negative survivors out there?

Yes Pam everyone is grade 3 but it stage 3 I want to hear from x

Re: Any triple negative survivors out there?

Hi Pam,
I was triple neg grade 3 (though I wasn't stage 3). My understanding is the grade is the aggressiveness of the cancer cells, the stage how far the disease has progressed. It's normal to cry - it is sad and it is hard and no-one can be positive all the time. I still have the odd bad day even after all this time. Look after yourself.
Bel x

Re: Any triple negative survivors out there?

Jinny , I think most triple negative breast cancers are grade 3 but am no expert. I hope there are grade 3 survivors out there as I want to be one of them. It's hard to stay positive I know and I cried tonight so know how you are feeling as I was grade 3 TNBC but it's been removed and hope it will not come back.

Pam x

Re: Any triple negative survivors out there? Jinny - grading and staging......

TN is not always grade 3 it is mostly but a lot of ladies have grade 2 TH

Re: Any triple negative survivors out there?

Is there any long time survivors with stage 3? I hear loads stage 1and 2 but not many stage 3 just need some positives?

Re: Any triple negative survivors out there?

Hi JJL,
Here are my thoughts on chemo:
I'm someone who hates taking regular medicine & the thought of chemo was hell. I can't remember, as it was so long ago, what % increase of survival they told me it would give me, but it was maybe 10/15 %. But in the end I decided to do it, as it was what all the oncologists I spoke with recommended. I figured that unpleasant as chemo would be, it would be finite and I wanted to do whatever I could to improve my chances of survival. If I hadn't done it and the cancer had come back I wouldn't have been able to forgive myself, whereas if it had at least I'd have been able to say, well I did my best. I know it's a very individual decision though and I would of course listen to what your doctors advise you.

Also, please believe you can beat this - people do survive triple neg (there's a book about it - Surviving Triple Negative breast cancer - you can get it on Amazon and which might help). I am a long term survivor - 13 years clear, and I recently found out I have a faulty BRCA 1.

Best of luck with whatever path you choose.

Bel x

Re: Any triple negative survivors out there?

Hi ladies I am at the early stages of going for pre ops, scans etc and meet with my oncologist on Wednesday and I am absolutely terrified that they tell me bad news regarding it having spread but I do know that regardless of the outcome I want to throw every ounce of treatment at this horrible disease to get rid of it and enjoy whatever months years I may have with my family. I pray that it never returns but if I don't take certain treatments and it came back I'd automatically blame myself and would not be able to live with the guilt of maybe depriving my family of more time with me, hope that makes sense. Roseanne x

Re: Any triple negative survivors out there?

Hi JJL - I was 55 when diagnosed with IDC being grade 3, tumour 31 mm at its largest point. I also had node involvement so I decided to go for the whole treatment with chemo first, then surgery then rads. I know it may come back and decided not to look too much at percentage increase benefit of each decision. After operation it was confirmed o had a full medical response to chemo. This apparently is good news but there are no guarantees. I was lucky to have support during chemo which there were 8 of and it was a very hard time so I do understand why some decide not to go this route. I was in hospital a couple times during chemo and become allergic to the PIC line and of course had all the other side affects.

I wish you good luck in your treatment and choices.

Pam x

Re: Any triple negative survivors out there?

Hi JJL
I can try and explain how I came to my decision but not everyone will agree with me! I am a fit and healthy 54 year old (53 at the time I was diagnosed). I knew little about TNBC but what I read terrified me. However after many years working with medical professionals ( I work in medical education) I also know that doctors follow protocols and 'one size fits all' is often just the standard course. I have seen first hand how drastic chemotherapy can be and I figured the certainties of putting myself through 5 months of misery were just not worth it for the tiny chance that a cell or two escaped and might be wandering around my bloodstream! I knew there were no nodes involved and I knew I had clear margins. The percentage gain from chemo was (I think) 6% and that just wasn't enough for me. I talked it over with my GP, oncologist, breast care nurses, friends and colleagues and decided to decline. There are no guarantees and even after chemo the dreadful disease could still return. I understand many ladies will grasp at any treatment and in a way I can understand why - at least if you take everything on offer you won't kick yourself and wonder 'could I have done more?' I made my decision as it was what my instinct told me to do and I have to say I had the complete support of every healthcare professional I spoke to. Of course chemo was offered but it is 'belt and braces' in cases like yours and mine and for me the price was too high.
I am now 1 year post radiotherapy and just about to have some reconstruction using lipomodelling (on Wednesday) and am telling myself that after I have recovered I will put the whole sorry episode behind me and live each day to the fullest. I don't want to spend the rest of my days watching ever thing I eat, drink or put on my skin. I am going to just get on with my life.

Re: Any triple negative survivors out there? Jinny - grading and staging......

I mean stage 3 not grade 3 as triple neg is always grade 3 thanks ladies x

Re: Any triple negative survivors out there? Jinny - grading and staging......

I was digonosed last May so finished all treatment November had mastectomy chemo and rads but I'd just love to hear from them with trip neg and quiet few pos nodes who are few years out hope people understand were I'm coming from I suppose it looking for reassurance all the time!

Re: Any triple negative survivors out there?

Hi Julie. I'm 47 was diagnosed with 2 cancers of the breast at same time and BRACA1. Stage 2, High grade IDC-Grade 3. Lymph vascular invasion present. Left breast tumor triple negative and right one her2 positive. Clear margin, neg lymph nodes. I guess I need some encouragement as I refused to have any treatments done. Can you explain a bit more your reasons for refusing chemo...
I'd like to hear more stories about plp refusing conventional treatments and outcome. My heart tells me whether I do chemo or not, if it's gonna come back, it just will.
Scared but stubborn!!

Re: Any triple negative survivors out there?

Thank you Lucy, I will have a look just now, this forum is such a great help, I have been totally distraught and worried sick but since reading so many posts I feel more positive now, thanks again. Roseanne x

Re: Any triple negative survivors out there?

Hi Rosanne

Welcome to the BCC forums where I am sure you will find support and shared experiences from your fellow users, please also feel free to call our helpliners who are on hand weekdays 9-5 and Sat 10-2 for you on 0808 800 6000

I am posting a link to the BCC 'Younger women' area of the site where you will find diagnosis/treatments information along with further support ideas which I hope you will find helpful:

https://www.breastcancercare.org.uk/younger-women

Take care
Lucy BCC

Re: Any triple negative survivors out there?

Hi ladies, I'm new to this forum and have read so many inspiring stories of success which has helped immensely. I am 42 and was diagnosed with tnbc last week, I'm not sure what stage or grade as I wasn't told that yet, I do know from my ultrasound it is approx 2cm. I had biopsies taken from my lymph node and have no sign of cancer there thankfully. I have to go in to have this node removed however as a precaution then have a bone scan and body scan before they start me on 5 months of chemo followed by a lumpectomy then radiotherapy. I must say I had no idea how bad tnbc is until reading on here but I have also learned that once it's gone there is less chance of this type recurring. I just want to say thank you to each and everyone of you for posting your own personal experiences as it really does help. I was going out of my mind with worry and fear but feel much more positive now 😊❤️

Re: Any triple negative survivors out there? Jinny - grading and staging......

Jinny, I was grade 3 with nodes involved. I was diagnosed August 2014 so not long ago. I was told by the hospital that because I had a complete response after chemo that this should increase survival rate. I had 8 chemos then surgery, then 20 rads. Because of the complete response this does improve things. I'm not sure of your status but don't give up hope as some of us do survive. Take each day as it comes. I'm trying to stay positive and know this is hard being TNBC.

Pam x

Re: Any triple negative survivors out there?

Is there any stage 3 long survivors? I know it great to hear from all but you don't seem to hear from many stage 3 with lots nodes pos a lot are getting mixed up with stage and grade I would love to hear from some ! Many thanks ladies xx

Re: Any triple negative survivors out there?

CathyB re bras - try ASDA - the George range are quite nice and I found very reasonable £8 - plus bought the swimwear - best online as cannot seem to find in ships

Re: Any triple negative survivors out there?

Hi not sure if I can call myself a surviror as such at this early stage - I went through treament last year

Diagnosis Feb 2014

Chemo April to July 2014

Bi lateral masectomy and lymph node clearance August - cancer was in left breast and lymph nodes

Radiotheraphy Sept/Oct 15 sessions

 

I am having my first six month check up next week

I was feeling pretty good, but now feeling very very tired and seem to ache all over??

Back at work full time

 

Starting to read too much about re occurance or spread in the first three years ! Not told much about triple negative when I was diagnosed but learning more - and a bit freaked out by what I have read - is this too much knowledge??

Re: Any triple negative survivors out there?

Suzanne, not sure where you post to me was but replying late. Hope you have found time to help with mental coping? I'm taking each day as it comes and trying to eat well and exercise a little. You may need some professional cou selling which I'm getting from my hospital,.

Pam x

Re: Any triple negative survivors out there?

Good luck with your phased return to work, having something "normal" to focus on (rather than just BC) can be quite refreshing.

As for bras - I have tried lots, expensive ones that feel like they are cutting me in two, and lovely soft ones from the M&S post-surgery range.  These have come on leaps and bounds in the 6 years since my surgery and the lost ability to wear underwired fashion bras. I don't wear a prosthetic but all my bras have the pockets for them.  Plus in M&S you don't pay VAT on their post-op bras, you fill in a little card attached to the bra at the till with your consultants name and hospital - every little helps!

Re: Any triple negative survivors out there?

Thanks for congrats everyone.

I have a large red spot under arm but managing.

Today got appointment for cyst removal which is great as this is prevent ting me wear a bra.

Pam x

Re: Any triple negative survivors out there?

Hi Pam
Not at the stage of going back to work still got rads etc to do. Just wanted to say well done for getting through all your treatment and starting to get your life back xxx
Hope all other ladies doing ok. Xx

Re: Any triple negative survivors out there?

GP appt today for discussion return to work. Any advice from anyone who is dealing with work and negotiating phased return. I'm concerned repeating actions eg typing could cause lymphedoma. Any advice?


Also starting 6 was free yoga at my hospital to build arm strength.

Pam x

Re: Any triple negative survivors out there?

So happy for you bel and thank you so much for sharing and giving us hope xxxx

Re: Any triple negative survivors out there?

Oh Bel, it is Wonderful. So very happy for you and your friends and family. Grateful too, because it gives hope to those who are going through it now. Bless you.

Re: Any triple negative survivors out there?

What an inspiring story thank you