Any triple negative survivors out there?

[Whitfield]

Thanks for wishes everyone.  Today appt in late afternoon.  Hoping it's a cyst.

px

[1852]

Hi pam just saw your post good luck for Thursday I had some lumps on remaining breast tested all cysts hope you have same result 👍

[Happybouncing]

Hi Sarah,
Sorry you find yourself here too.
I haven't posted for a few days as slowly trying to digest and get my head round stuff.
I started my chemo last Fri and it was ok. I used the cold cap which was unpleasant but bearable. I have hated the nausea and constant sick feeling I've had since but am relieved to be on the journey to tackling this beast.
I found out yesterday that it is in my lymph nodes and the MRI shows the cancer is too extensive for a lumpx. Waiting to get the results from the gene test to find out if it's bilateral mastx when surgery comes in September.
The hardest thing I'm finding is not being able to plan or know how I'll feel moment to moment - I may have been a bit of a control freak in my previous life and this has shaken that control from me!
Pam - I'm sorry to hear you've found another lump and hope for positive news when you are tested.
Hugs to all here and sending as much positivity as possible to everyone. Xx

[Whitfield]

Lovely list Blue67.  What you say is so true.  Good your now on the high risk programme and actually see your oncologist yearly.  All I get is a mamogramme under the Marsden and my cancer had moved to my nodes.  That said, I did achieve a complete pathological response.  So I suppose they think I'm not high risk.

Cancer is a lot to deal with and as you say ...a day at a time.  I'm now two years clear but have new lump on other breast being investigated this coming Thursday.  Trying not to think about it until then as there is nothing I can do but wait for appoiment.

It breaks my hear to read about these very young ladies with small children.   It's hard enough dealing with the decease, let alone having small ones to think of and try to tell what's happening.

Wishing all of those visiting here health and happiness.

Pam x

[Blue67]

I was diagnosed with TNBC in January 2015, age 48. I was previously diagnosed with BC in December 2011 (in the other breast). The first time I had a mastectomy and reconstruction. With TNBC I had a lumpectomy, chemo and radiotherapy. My nodes were clear. I was supposed to have 6 doses of FEC, but after two, I had a skin reaction and was changed to taxol. I was supposed to have 12 weekly doses, but after 9, I ended up in hospital, on oxygen, with lung damage. My oncologist said no more chemo. I then had 5 weeks of daily radiotherapy. I was tested for the BRACA gene, which was negative. I requested a full hysterectomy, as I'd had BC twice by the age of 48. I had that done last February and was plunged into a full blown menopause. Kings College Hospital in London put me on their high risk programme and I go there for a yearly MRI and mammogram. I see my breast consultant once a year, which was on Friday and was all clear.

I think it's very daunting when you're given the TNBC diagnosis, but it responds well to chemo. There's no denying that chemo is hard, but you do get through it. I had long hair, but had it cut short before chemo started and went bald in the end (wigs and scarves didn't work for me). My advice to anyone going through this, is take one day at a time. You will have good days and bad days. If it's a bad day, just go with it and do whatever you need to do to get through the day. The good days are bliss. If possible, try to book a holiday or short break for when the chemo ends, then you can focus on that when you're feeling crap. I've kept my hair short and everyone says that I look 10 years younger. Going through cancer treatment is you're experience and nobody can understand it unless they've been through it. I wish all you ladies lots of love and remember...you get through this. XX

[Whitfield]

Yes, some of us test negative for BRCA gene do you might not have it.  Thing is you can flip this as there are as yet unknown genes causing TNBC and some feel they would benefit from knowing if they have the,.  Knowledge is power and as Bel says if you have an identifiable gene it can help with decisions and monitoring.

good luck

pam x

[bel]

Hi Sarah, sorry to hear you're going through all of this. I was diagnosed around your age (15 years ago now & still fine!), & with no family history at the time. In those days no-one suggested a brca test, so it was only years later (after 2 cousins got bc) that I was tested for it & in my case it did come back positive, though it's certainly not necessarily going to be the case with you, and I know other young women who've had triple neg & tested negative for brca.

If you do by any chance test positive, I totally understand how hard that is to digest, as I've been there. But with regards to surgery, most women don't have their ovaries out before they are around 40/have completed their family, as that's when the risk starts to rise. So I'd imagine that's not necessarily something you'd need to rush into. And quite a few women opt for high level breast screening instead of having risk reducing surgery. In fact I did exactly that for years before finally, just 3 months ago, having the surgery & reconstruction. My only regret is not having the surgery earlier: I'd imagined I'd find it quite emotionally traumatic, but the reality was it wasn't at all & I am very happy with the results - if anything, I can honestly say they look better than before.

I hope your test comes back negative, of course. But if by any chance it doesn't, remember you do have choices, and I feel it's important not to rush into any big decisions.

Love,

Bel

[Sarah86]

Hello,

I'm Sarah and 30 years old and have no children, last year i found a lump and was diagnosed with Triple Negative Breast Cancer. Since then I've had the operation, had my eggs frozen and now on my 4th out of 6 chemo treatment. I will be starting 3 weeks of radiotherapy after chemo and also will be having my genetics tested as to why I got cancer as no one in my family (that i know) have it.

I was just wondering if anymore has had this? Or know what it could be all about, Im honestly petrified as my doctor told me if my genetic DNA comes back positive, it will mean breast and ovary removal. I got my head around this.. cancer, but this is just another kick in the guts and is keeping me awake most nights now.

I am remaining positive, but there are only so many knocks i can take right now. So any information, would be great.

Thank you all and sending positive vibes ♥

[Raitchr]

Hi I am thinking new shot hair too before chemo although that won't start for awhile, still wait for op date, am on cancellation list.

The boys seem ok, had a few tears here and there. Youngest has told all his class in show and tell and the teacher said it has been the most rewarding day in her career in the wY the kids reacted and came up with the idea that he may need hugs and fun from them to get him through it. Oldest is fine, told his friends, well announced it on Instagram!

Keep changing from Mx or Lumpx, need to decide by next Monday...

[Whitfield]

Oh, Sutton has a big car park so ensure you ask for the free car parking pass which they give to rads appointments.

i had 20 and the team were lovely.  Just tiring doing that daily so try to get appointment that will suit you and any travel plans.

pam x

[Whitfield]

HappyB,

Yes, afraid so.  I had full node clearance due to spread and they really muck around with nerves under arm. If yours has not spread you should be okay.  My breast post lump removal does not really pain.

I. also,had chemo first, the surgery then rads.  Just to catch any cells that were on the move.

sending love.

pam x

[Happybouncing]

Thank you for your positive words Skybabe, it was all very overwhelming to begin with but I am starting to get my head around things now. Hugs xx

[Happybouncing]

Pam - I think I will have my radiotherapy at Sutton. Is the pain left over from the treatment? Xx

[Happybouncing]

Hi Raitchr,
I have now found out that I am starting chemo tomorrow. Yesterday I decided to take control of a new hairstyle and have gone short in preparation.
Good luck with all of your treatment. How are you children doing? I am taking mine to meet my nurse today.
Sending positivity and hugs to all. Xx

[Raitchr]

Hi Happybouncing, we sounds so similar in diagnoses, got told the same yesterday. Good to have someone in same place at same time. I am 46 and have 2 boys 13 and 9. All a bit scary right now but being positive is the only way we can deal with this. The lump is 2.5cm measured on Mri and I have a choice of lumpectomy or mastectomy, followed by chemo and radiation. Going to be a bumpy18 months but we can get through it. I fancy a new hair style anyway...

[Whitfield]

Sounds like they had caught it in time.  Wishing you a good prognosis and treatment plan.  I was treated still Sutton RM and still attend now and then for pain management.

px

[Happybouncing]

I went to the Royal Marsden in Chelsea but am under Kingston.
The CT scan shows it hasn't spread. There are two tiny lesions in the lungs but they may be from previous flu - they will be monitored regularly and the chemo will target them too if cancerous. The lymph node test was inconclusive so they need to take more and I still need an MRI. I should be starting chemo in the next 10 days and have been told that the treatment plan is curative. I know it is going to be a long and scary battle but it was a relief to hear those words.

[Whitfield]

HappyB,  wishing you good CT, and node results.  Stay in touch.

Which Marsden you attending?  

Pam x 

[Skybabe777]

Happy bouncing - when I was first diagnosed with TNBC I read many things online about our type and the survivability of it. Do not dispare.  I Personally know 3 people that had this type and are 20+ year survivors. They made it using therapies from years ago. We have new and improved drugs now that will allow for an even better outcome. This is not a death sentence! We have many more years of living.  Keep those spirits up for you and your family.  (((Hugs))))

[Happybouncing]

Thank you all so much for the replies. I am going to The Royal Marsdwn today to have the genetic blood test and to get my CT and lymph node sample results. They are also going to talk to me about a PARP trial but it's quite confusing as may not have any direct benefit for me and delays my chemo for another 1-2 weeks.
I have been completely open with my boys and they have both the 'Mummy's lump' and 'Medikidz' books. I have told the school, one teacher is better than the other. I will ask my nurse if the boys can meet her and look into the counselling.
My fear at the moment is the fact our cancer type seems to be the least curable and I have no idea how to balance in my brain being positive and facing reality.
I am very lucky to have an amazing husband, amazing family and amazing friends, and am now grateful to have found you all. I will take a look at the Facebook page.
Hope everyone has a positive and well day.
Xx

[Whitfield]

Love you all.

pam x

[1852]

Hi sky babe I was given weekly paxitaxol following a lot of problems on taxol i was a bit concerned how I would cope having weekly but it was a lot gentler so it worked out to be the best thing for me . Hope it is same for you . To newcomers sorry you have had to join us but we are here for you if we can help we will. Take care everyone Den 

[v.howells77]

Hi Happy Bouncing

It's such a shame when another person finds themselves joining this forum. However, you are at the right place for advice and support.

I like you was diagnosed with TNBC in my 30's with a child aged 7. I am due to have my 6th and last chemo next week and then move onto radiotherapy. You have already been given some wonderful advice reagrding treatment. I just wanted to added some suggestions in relation to your children.

I found that being as honest as possible with my little the girl was the best approach (my not work for all but that's my experience). I used the book 'Mummy lump' to start to expalin the situation. It's available from breast care org.

I tried to involve her as much as possible so it didn't seem like a secret. I took her to the hospital to meet staff,she helped me choice a wig, took my temperature etc. She was really dreading the hair loss part but actually forgets about it now.

I also spoke to her school and they have been amazing. They arranged some counselling sessions for her, which made a massive difference. They let her choice reading books to bring home in the hope that she would feel happier to read them. All these littles things made a differnce. Hopefully, you may experience the same sort of support.

No doubt your head will be all over the place. Take each day as it comes. It will get easier (with some bad days off course).

I wish you luck with your journey through this. Take care x

[Whitfield]

Hello BouncingB,

Sorry you find yourself here.  It's good to make these ties and connections to others who have gone or undergoing treatment.  The FB page is good but I found it a little overwhelming, but you may not.  

I was TNBC, stage 3, grade 3.

Things I found really useful were :

1.  Paintings nails dark colours to help keep them

2.  Water - A must

3.  Keeping on top of drugs as there may be a few and you may get brain fog causes by chemo.  So I made a home chart to keep on top of these.

4. Cut hair short before loosing.  This helped me very much as I had long list hair.

5.  Cotton caps for night time.  Bald head gets cold

6.  I asked for a PIC line as my veins collapsed and I needed 8 chemo so this seemed best for me.  You can enquire with BC nurse to ask if this would suit you.

7.  Don't just accept drugs if they're not working.  My initial anti sicknesses drugs didn't work.  There are a few types.

8.  But tempreture meaning devise.  A good one as you may need to keep an eye on your temp because you will be open to infection.  If it rises above what hospital say is the trigger don't wait and go to hospital.  

9.  Parking at hospital.  Some offer discount to for cancer patients.

10.  Get on list if you can for counselling for you and family.  Macmillan offer this and some hospitals.

hope this is useful.

Pam. X

We are here and hearing you. 

[Skybabe777]

Facebook groups: triple negative breast cancer foundation.  

[Skybabe777]

Welcome Happy bouncing,

this is a great forum to be on, and don't forget the triple negative FB page too. I find more people respond to you on that page. 

I was diagnosed TNBC last November. Stage 2. I'm 48.  I've been through 4 rounds of AC following by 1 round of taxotere and carboplatin. The AC part wasn't too bad looking back. No sickness just imence tiredness for the most part. My last infusion with the taxotere didn't do well unfortunately. I was supposed to have 4 cycles of that every 3 weeks apart. They place you on a lot of steroids and I had issues with them. It was hard to eat or drink cuz I felt so bloated, but because I wasn't drinking my fluid like I should have been, I got dehydrated and constipated! constipation usually isn't too bad when you are "normal" but when on chemo I found everything was pronounced. Needless to say after a few days of Miralax and stool softener I was fine. Oh, and I drink like crazy now. I also had Hand and foot syndrome, basically like a very bad sunburn on your skin. It happens sometimes when the chemo leaks through weak capillaries. 14 days later and I'm peeling. I called my doctor and he switched my one drug to taxol instead of taxotere, and I'm going to do 9 more weekly treatments instead of 3 more heavy doses. Less steroids (they keep you up for days) and not as harsh on the body but still as effective.  Don't suffer needlessly and keep your doctor informed. They CAN tweak doses.

I know you  must be extremely anxious. I know I was. The first few weeks were there worst for me in reguards to this new chemo experience. It's ok to feel the ups and downs. Scared. Anxious. Concerned.

You do get used to it if there is such a thing. Just remember to not assume all of the side effects you will read about your drug will happen to you ( I did....big mistake) and drink those fluids! Flush the drugs put of your system and help your body out. I think the biggest issue for me, personally, was my thoughts. My brain went into overtime! I'm busy around the house doing little hints here and there and keeping in contact with friends. 

It does the heart a world of good.  You have 2 young kids. You will need help from everybody. Don't try to do everything and farm it out. Usually the 3-4th day hits you hard. It takes a few days to get over it, and you will bounce back. 

Im heading into my first new drug infusion tomorrow morning. A tad anxious but hoping for the best. 

Wishing you all the best in this journey. We will survive and have stories to tell Years down the road. ☺️❤️

[Skybabe777]

Welcome Happy bouncing,

this is a great forum to be on, and don't forget the triple negative FB page too. I find more people respond to you on that page. 

I was diagnosed TNBC last November. Stage 2. I'm 48.  I've been through 4 rounds of AC following by 1 round of taxotere and carboplatin. The AC part wasn't too bad looking back. No sickness just imence tiredness for the most part. My last infusion with the taxotere didn't do well unfortunately. I was supposed to have 4 cycles of that every 3 weeks apart. They place you on a lot of steroids and I had issues with them. It was hard to eat or drink cuz I felt so bloated, but because I wasn't drinking my fluid like I should have been, I got dehydrated and constipated! constipation usually isn't too bad when you are "normal" but when on chemo I found everything was pronounced. Needless to say after a few days of Miralax and stool softener I was fine. Oh, and I drink like crazy now. I also had Hand and foot syndrome, basically like a very bad sunburn on your skin. It happens sometimes when the chemo leaks through weak capillaries. 14 days later and I'm peeling. I called my doctor and he switched my one drug to taxol instead of taxotere, and I'm going to do 9 more weekly treatments instead of 3 more heavy doses. Less steroids (they keep you up for days) and not as harsh on the body but still as effective.  Don't suffer needlessly and keep your doctor informed. They CAN tweak doses.

I know you  must be extremely anxious. I know I was. The first few weeks were there worst for me in reguards to this new chemo experience. It's ok to feel the ups and downs. Scared. Anxious. Concerned.

You do get used to it if there is such a thing. Just remember to not assume all of the side effects you will read about your drug will happen to you ( I did....big mistake) and drink those fluids! Flush the drugs put of your system and help your body out. I think the biggest issue for me, personally, was my thoughts. My brain went into overtime! I'm busy around the house doing little hints here and there and keeping in contact with friends. 

It does the heart a world of good. 

Im heading into my first new drug infusion tomorrow morning. A tad anxious but hoping for the best. 

Wishing you all the best in this journey. We will survive and have stories to tell Years down the road. ☺️❤️

[suzanne2]

Join not joking!!! Sorry x

[suzanne2]

Hi, sorry you have had to joking this group, but hope you get support here. Where ar you from xxxx

[Happybouncing]

Hi,
I am new to this forum so forgive me if I've posted in the wrong place.
I got diagnosed with grade 3 invasive breast cancer last week and found out today that it is triple negative.
Just wanting to learn more and connect with people who may have similar experiences. I am 37yrs and have two children aged 10yrs and 6yrs.

[Whitfield]

Hope all of you are well and we have no reoccurrence.  It's so scary what with only yearly mamos.

px

[1852]

Hi puggles never heard of the cells you had must be hard when you have something which is rare . I am sorry to read a lot of you haven't had the support you thought you would have . I have been lucky in that with both family and friends people on here will always be here for you . Unfortunately the world today is rush rush and people don't take time to think of others when treatment as finished they don't realise that chemo and radiotherapy leaves a lot of problems . Take care of yourselves  

[Whitfield]

Hi Den,

im also trying to loose weight.  Spring coming so it will be easier.  Sorry to hear shoulder not fully better.  Pain is a drag.

pxx

[Puggles]

Yes. ME. 3 years since diagnosis of TNBC which was also Apocrine (cells had mutated to look very like sweat gland cells, which is why my body would not kill them). No recurrence. Grade 2 with no node involvement. Never want to go through the chaos of diagnosis again so spent a lot of time clearing the place and sorting out family stuff in case it makes a reappearance. I have to date been an extremely lucky lady in that I didn't have a mammo until 61. Just thought that as my mother died of breast cancer at 68 I had more time. Wrong. Not BRAC though my sister had ovarian cancer discovered at hysterectomy at 51. My mother was adopted so knowledge of health of other female family members. Anyway I'm here.

[1852]

Hi pam good to hear from you did you see post from PaulS on September sunbeams it was good to hear from her .glad you doing ok my shoulder is a lot better still trying to tackle weight not in right mindset will have to frame myself .keep in touch DEN

[Whitfield]

Hi Den,

Getting better and coming up to 2 yrs post chemo.  Will be theee year post op in March.  

The usual stuff, hand still a problem but lady part now under control.  Had a biopsy of ladypart and diagnosed with a skin problem.

hand and u derarm still giving pain.

pam xx

[Skybabe777]

I am in the middle of treatment. Just finished 4 rounds of AC and now I start 4 more rounds of Carboplatin and Taxodere this Friday. I'm hoping this will be easier side effect wise than the AC.

[Taran]

Hi Katydaw, I'm sorry you aren't finding the support great. I've had some amazing support from family and friends but have found people definitely forget all about it once treatment is over. They don't seem to realise you still have a lot of recovery (physical and mental) to do at that point. How is your little boy getting on? My daughter is 1 next month! I have no idea where the year has gone. My eldest will be 6 soon too which is even more scary!xx

[Katydaw]

Thanks skybabe. Where are you at with your treatment? I've nearly finished rads. Skin very sore! Xx

[Skybabe777]

I have found that once people know you have cancer, they just don't know how to be supportive. Some feel like they are in the way and won't contact you at all, while others can be overbearing. I've had both extremes. 

My mom had breast cancer 10 years ago, however, hers was a different type. She understands what I'm going through up to the point of chemo. She had a lumpectomy and radiation. She even stated it's hard for her to balance her support. 

Talk to your fiends and family. Let them know that support is part of the success in going through this.  Then tell them how you want support. Also tell them you will have your up and down days and not to take it hard when you just don't feel up to company. 

Keep your chin up.  Good luck. 

[Katydaw]

Hi everyone

It's quiet on here. How's everyone doing? My little boy is nearly 9 months now. Can't quite believe it! Still finding the fear very hard to deal with. Did anyone else find the support from family/friends not as great as expected? Anyway, hope you're all doing well xx

[Fishandchips]

There's lots of fb pages about treating breast cancer with cannabis. Lots of articles confirming cbd oil is not effective. It's all about thc oil which is very hard to make in U.K. and impossible to source.
Cbd oil will not help you.

[VirginiaL]

Can you give me any links to the use of high THC oil for TNBC.  I have be using the CBD oil but see that you recommend the THC instead.  Especially interested in suggested doses.  Thanks.

[Skybabe777]

What is 'quimi for reduction'?

[Skybabe777]

Hi Linz,

I was diagnosed Stage 2 in late November. They started me out on chemo right away. I just finished my 3rd treatment with 5 more to go. My genetics test came back negative for the BRCA gene thank god.

I'm still not sure what my surgery options are yet, however, I only want to go through this bump in the road once in my life so if it means double mastectomy then so be it. So far the chemo has been a learning curve for my body but I am taking it one day at a time.

What mixed emotions do you have?

Sherri

[Dizzias]

Hi

i have just recently been diagnosed before xmas, and had lumpectomy on 23rd December with lymph node biopsy.

I have Stage 2, Grade 3 triple negative breast cancer - will start chemo on 01 Feb.  Have mixed emotions about stuff too. 

Been referred for for genetics test on 08 Feb.  

Linz 

[ChrisAsh]

Also meant to say Evelyn that if you are on Facebook there are 2 UK based groups which you might be interested in joing - triple negative warriors and triple negative Breast cancer UK support. Let me know if you're interested in joining them but can't find the link

chris 

[ChrisAsh]

Hi EvelynQ I was diagnosed in July 2016, had chemo first then lumpectomy just before Christmas. Will be going on to have radiotherapy next. How are you doing? 

Chris 

[EvelynQ]

Hello
I was diagnose on tSeptember 2016, finished quimi for.reduction on Dec.22..Looking for persons to chat.