Any triple negative survivors out there?

[Taran]

That's a great analogy Bel. Katy, it's so very normal to struggle. I do think time will help. It's just getting to that point. I find it hardest when I think about the possibilities for the future for my children. But I plan on being like Bel and still being here to see them grow. So until someone proves otherwise, that's just how it's going to be!xx

[Sue H-S]

Hi Bel,

so well put!

Hugs

Sue xxx

[bel]

Not surprised you're finding it hard to come to terms with, Katy. Totally brutal how one's life changes from one minute to the next (and yet all around you everyone else's are just carrying on as normal). Cancer is really hard at any age, but I think it's even tougher when you're young - I was 31. Don't feel bad about finding it a struggle - I think it'd be weird if you didn't! But I found that time really did help. My oncologist described it well: it's like a stone thrown into the water and the ripples closest to the stone are really big & close together, but gradually the ripples fade and become more spaced out. xx

[Whitfield]

Thanks for coming back once again Bel with your storey. 

P x

ps I also read that reoccurrence is greater in first two years then we drop into sync with other BC s.

xx

[Katydaw]

Thanks Bel, I'm glad you're doing so well. I do panic a lot about the tn element and also because I had two large tumours with lymph involvement. I just never expected something like this at the age of 36 with a very young family. Rightly or wrongly I am still finding it all so hard to come to terms with xx

[bel]

Hi Katy & everyone else,

I'm so sorry you are going through this nightmare. I am a 14+ years survivor of triple neg. Mine was small & had not gone to my lymph - so I am not the perfect example you seek -  but I did have vascular invasion & it was grade 3. I think you have to remember that most people who have had BC & are fine now will not be coming on this site anymore & are getting on with their lives, so that's why it's hard to get the answers you want. I didn't come on it for years after my diagnosis, and the only reason I came back was because I discovered, a few years ago, that I was a BRCA1 carrier, and I came back as I was looking into preventative surgery options, and somehow came across this thread. 

I do know of SO many long term BC survivors (who I've come across outside of this site), and some of them absolutely had large tumours & node involvement - and they are fine now. I don't know if they were triple neg or not, but I personally would try not to get too obessed about the triple neg thing - when I was diagnosed I didn't even realise there was a distinction made between that and other tumours so I gave it no thought. And us triple neg people have an advanatge over the others, in that once we've made it to 5 years I think we are pretty much considered cured - according to my drs at least.  

BC treatment is excellent these days, and getting better by the year (eg the chemo regime has changed since my day), and chemo is potent stuff that can be very effective, depsite the horror of going through it. I'm also a fan of eating well, ttaking he supplements like turmeric (though check what's recommended while on chemo) & generally just giving yourself the best chance possible to look after yourself and heal well. Happy to answer any questions. 

Wishing everyone all the very best with their treatment.

Love,

Bel xx

[Katydaw]

Thanks Taran and Pam. That's a great story Taran I just wish we had something like herceptin! Pam I long for the day I don't think about it everyday. I just feel tormented by it every waking moment. I just want the long life with my children I always expected. Xx

[Whitfield]

Katy,

Im not sure you would call me a long term survivor just yet but my tumour was 31mm and four nodes involved plus TN.  I was diagnosed in 2014 and am still here.  I recall Bel or Bev being fourteen years clear but cannot recall her original status.  I know having larger tumours and nodes involved is more worrying as reoccurrence and not surviving is a worry but we are all different.  TNBC can respond well to chemo and also long term Survivours probably don't post anymore so please try to stay positive. I take each day as it comes and try to enjoy the moment.  I know this is almost impossible when going through treatment but as you get to the end and things return to your new normal you will feel little more upbeat.  I recall thinking about cancer all the time, then every day and you know what now a day or two may pass without me thinking about it.  Worry and stats just add to our stress levels so try to keep positive.

maybe Bel or Bev will repost her story as she has done before.

seniding a hug.

pam X

[Taran]

Oh, and the link would help too 😂

https://www.breastcancercare.org.uk/information-support/vita-magazine/vita-blog/little-bit-hope-seve...

[Taran]

Hi Katy, I saw this shared somewhere else today. Although not triple negative, this woman had a large, aggressive tumour with lymph node involvement and is now 9 years clear (blog is 2 years old) so might be worth reading? I'm sorry I can't be more help. Are you on Facebook? If you are, I really recommend joining the Young Breast Cancer Network (UK) group. The support on there is amazing when you are struggling with things xx

[Katydaw]

Anyone???

[Katydaw]

Hi all. Feeling a bit ropey today after chemo yesterday. I'm always looking for positive survivor stories but most I come across had small tumours, no lymph node involvement or vascular invasion. Does anyone know of long term survivors with lymph nodes and large tumours? Xx

[hope]

Hi Kat, we are very much out there, not just surviving but thriving. I was diagnosed in 2009 and I am still very much here! Stay strong and believe that the chemo is extremely powerful...will be even more tailored to your needs by now. I had a mastectomy too didn't do rads but you are hitting it with everything you can so you ae doing the very best you can.

My thoughts are with you, it's a tough journey but there are amazing moments when you feel you can do anything, at least that;s how I felt on my good weeks mid chemo. I hope you have those moments too but even if you don't, believe that the horrid swamp juice will do the job it's been given. Good luck to you xx

[1852]

Thanks bekah hope all going ok for you and all going treatment you will get through we have gone through what you are I do feel for you with little ones to look after as well take care DEN💐💝

[Bekah78]

Thanks Sue

Looks like a good excuse for some retail therapy.

Hugs Bekah xx

[Sue H-S]

Hi Bekah78,

The reason for the dark nail varnish is that many of us become more sensitive to sunlight and ultraviolet light during chemo.

Yes, there is some advice - and you may wish to explore some postings with regard this on this thread.

https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Chemotherapy-Tips-and-Tricks...

Preferrably water based nail varnish - and also possibly change your varnish remover, too - so it does not contain any suspicious 'nasties'.

Like always it is our personal choice - and of course sometimes our budgets may not stretch....

Hugs

Sue xxx

[Bekah78]

Sorry you're surrounded by cancer 1852. I'm sure they'll be grateful for the support.

Pam, I saw the mention of dark nail varnish through treatment. Does it need to be a particular type of varnish or will any type do? Xx

[1852]

Hi pam I am waiting for result of mammo I am still having a lot of pain in lt arm which keeps me awake but ha ho I am alive hubby is fine thanks one of my good friend,s hubby is having bladder removed in next couple of week and my b-in- law is having part of bowel removed in next couple of week so once again surrounded by cancer but I hope I can support them as they did me take care x

[Bekah78]

Thanks Sue. I'll look at those xx

[Sue H-S]

Hi Bekah78,

Here are some further links, which you may wish to expore to support you and your husband

https://forum.breastcancercare.org.uk/t5/Younger-women-and-families/bd-p/4449

https://forum.breastcancercare.org.uk/t5/Partners/bd-p/Partners

Hugs Sue xx

[Taran]

Yep, evenings and nights are not your friend!! I used to lie awake for hours thinking. Luckily at the moment sleep is not a problem thanks to chemo tiredness...slept most of yesterday and still slept all night!! Retail therapy sounds good. Make sure you treat yourself as well as baby though.xx

[Bekah78]

I'm doing ok today thank you. You?

We've done some retail therapy. Bought a jumperoo and some other toys to keep little one entertained. Planning for days after chemo when energy may be low but he needs entertaining. It's helped keep our minds off things today. I find evening/night times and mornings when it gets to me more. When I'm doing normal life things I'm distracted for a while.

[Taran]

How are you doing today Bekah? Hope your little one is keeping you occupied!!x

[Bekah78]

Thanks ladies. I'm so glad I've found this forum. My husband is doing his best to be supportive but he's scared too. We do have lots of suport from friends though, as well as hubbies support team (24/7) but it's great to be able to chat to others who are going through it too. Makes it feel less lonely. Xxx

[AnnDaw]

Hi Bekah sorry you've found yourself here but we will all support you. You will manage this and be strong you already are as you are supporting your husband who is disabled. Also if he can't support you physically he maybe can give you the mental support that you will need. The word support is used so much and if you have that your halfway there. All of us I believe can fight this tnbc diagnosis just look through the posts of ladies who are here quite a few years after initial diagnosis its not a lost cause at all any cancer diagnosis is a heartstopper. It's a major shock but gets more manageable and less scary as treatment goes on. When you have a treatment plan in place there will always be someone here to answer any questions you may have. Anne xxx 

[Whitfield]

What is going on with so many young mothers getting TNBC?  I feel so for you all and am happy to answer any questions you may have.  That said I was 54, without children when diagnoised so very different to you.  I was TNBC 31mm lump with node involved.  So chemo X 8 first (4 EC then 4 taxol), surgery including full node clearance and 20 rads.  It's doable but be kind to yourselves.  

sending love and advise to get on counselling list now as having someone to talk to really helps.

macmillian are great and can offer money advice and therapies.   You now get free medication so apply for free exememption charge card.  Drink as much water as possible during chemo and take drugs at the right times with or without food as this helps control sickness.  If anti sickness drugs do not work ask for different ones.  There is more than one type.  Some NHS hospitals offer cheap wigs, wear dark nail varnish during chemo as this helps keeps nails attached.  Also grab all the help you are offered.

Some people sail through treatment and some have a harder time but you can do this.

Den - Nice to hear from you.  Hope you and hubby are okay?  I'm still getting there and have mamo booked for 24th August so a little freaked out.

pam 

[1852]

That's rotten marina hope all goes well with next lot of treatment . Hello to all newcomers sorry you are having to join us we are here if you want to rant or need someone to talk to about treatment if we can help we will love DEN

[Katydaw]

Thanks Anne. I need to get to where you are head wise but glad to hear it's normal to feel panicky sometimes. You're right, it's having the little ones that makes it really hard. I'm scared because I feel like my life has only really just started. Hi to Beckah. I was diagnosed when pregnant with my little boy. I also have a 4 year old girl. Terrible this is happening to anyone but it seems especially cruel when you're a young mother. Listen to Taran, I still haven't quite come to terms with the situation myself xx

[Sue H-S]

Hi ladies,

If you really wish to understand more about what s being done for TNBC - you might find these links of help.

Please only read, if you feel up to it, as it is a scary time, but I do hope it gives you some hope- so much is being done and these links do not yet talk about the most recent trials, which have started in the UK. 

http://www.breastcancer.org/symptoms/diagnosis/trip_neg

http://www.macmillan.org.uk/information-and-support/breast-cancer/understanding-cancer/types-of-brea...

http://www.macmillan.org.uk/information-and-support/breast-cancer/understanding-cancer/types-of-brea...

Hugs

Sue xxx

[Taran]

I hope Friday comes around quickly for you. The waiting is the worst bit. The treatment plan is likely to be similar, but maybe in a different order. I had positive lymph nodes and had my surgery first. Then 6 rounds of chemo, 3 weekly. Then radiotherapy. I'm sure you'll feel better when all the results are in and you can start treatment xx

[Bekah78]

Thank you Taran. I'm sorry to hear you're in the same boat too, but grateful not to be alone my next appointment is Friday when should have the scan results back from CT and bone scan. They're expecting these to show it hasn't spread yet. If the sample they took Friday comes back negative from lymph gland they are talking about starting chemo the week after, once they've put a marker in the lump. I've been told I'll have chemo once every three weeks over 18 weeks. Your treatment similar? Xx

[Taran]

Hi Bekah,

I'm sorry you have found yourself here with us. I don't have any great words of wisdom I'm afraid. I was diagnosed in May when my baby girl was 8 weeks old, so I know the place you are in right now and it is more than scary. Since then I've had a lumpectomy and full node clearance, and had my 2nd round of chemo last week. It's been a tough couple of months, but the days and weeks around diagnosis were definitely the hardest. Once you get a treatment plan in place and you can see where you are heading, the focus changes and I felt different after that. Hopefully you will find the same too, especially as this first part seems to be such a whirlwind there is no time to sit and take on board all of the information and emotions properly. Have you got your next appointment lined up or any idea what treatment they will start with? You'll get lots of support on here so use us to vent/share with as much as you like.xx

[Bekah78]

Hi ladies.

I'm new to this forum. I found a lump 7 weeks ago and was told a week ago I have breast cancer, and on Friday that its TNBC.

I have a son who is 13 weeks old and my husband is disabled so I'm scared. Really scared! Not for me but what will happen to them if treatment doesn't work. Any advice gratefully received. I will look back through posts on this thread too.

Bekah x

[AnnDaw]

Hi Katy yes im sure we all still have those moments.I've finished treatment now until I have implant and I'm going back to work mid September. I don't cry anymore about what might be I concentrate effort on diet and lifestyle but by the same token I'm not giving up on things I enjoy either. I feel I'm striking a good balance. It's probably affecting you a bit more Katy because of your young family and I can totally see why that would be. I didn't cold cap I couldn't do with the extra stress at the time. I hated the baldy head so in the house I always wore headwear and never step out of doors without a wig. I'm at the stage now where I've got about an inch of growth all over and it seems quite thick so hopefully in a couple of months I'll be able to have some kind of trendy cut. I know its no use me telling you not to worry I can only tell you im in a much better place now than I was when at the stage your at. I think for me once the chemo was over I cracked on in leaps and bounds. I can't remember Katy if you have had your op or having chemo first. This rubbish time you're going through is temporary and you will get normality back believe me. I bet you're baby boy is coming on well and his big sister. Take care Anne xxx. 

[Katydaw]

Hi ladies

I haven't posted for a while but have been lurking. Hope you are all doing ok. I'm about 8 weeks into my chemo. Having weekly tax and carbo at the mo. I've been cold capping which I thought had been pretty successful but my hair has started to thin now which is a bit depressing. I don't know why I care really but I suppose continuing to look like me makes things seem more normal. I'm still upset and panicky quite a lot of the time. I'm just terrified of what could happen. I'm ok for a bit and then it just comes over me in a wave of panic. Does anyone else feel like this? Xx

[Whitfield]

Yes, I'm on a trial but it's just giving parts of tumour during chemo, post surgery and bloods every now and then.  I think they want to see the optimum amount of chemo required for TNBC at different stages. It won't benefit me specifically but goes towards future knowledge bank of information and may help others.

I'm now looking towards second mamo post surgery and although would like to take part in a trial I've not been offered any.  Thing is to enjoy life as much as you can.

px

[Sue H-S]

Hi Chris,

There is some infor on this site

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...

I would, however, suggest to discuss the possibility with your oncologist, as there will be strict criteria for specific trials, to ensure that the data is undoubtable for the specific case in which the trial is done.

Hope this is of help.

Hugs

Sue xxx

[AnnDaw]

My onc put my name forward Chris. During my chemo she asked if I would be interested if any trials came up and I said yes. If you are interested you could do it in reverse fashion and ask them to consider you to take part. Xx Anne 

[ChrisAsh]

AnnDaw/ Sue thanks for the info about supplements which I will definitely look into once my chemo is finished ( initial appt on weds). Can I ask where you get your info re clinical trials etc as I am interested to know but in a way scared to google anything in case I scare myself even more - if that's possible.

thanks chris xxx

[Marina]

To answer your question I had tumour removed in Oct 2015 and the cysts appeared during chemo. They decided to wait and finish the 8 sessions before operating, only to descover that the walls of one of the cysts was cancerous. Now waiting for date for 3rd op to get clear margins.
Am taking my diet very seriously now, juicing etc.

[AnnDaw]

Thanks Sue and from reading your posts and following some of the links you have mentioned  I get the impression that you possibly are pretty much on my wavelength regarding how we let this affect our lives. I've been to holland and barret this afternoon and purchased the solgar turmeric capsules to go with the other supplements I'm taking. The clinical trial im taking part in  is to trial aspirin would you believe. I may get to take 100 mg 300 mg or the placibo. I'm hoping to get randomly selected to get the highest dose but could end up with the dummy drug. Might even buy a chemistry set to see if I'm on the real thing lol.xxx 

[Sue H-S]

Ann - you are brilliant! And so very right....
Hugs
Sue xx

[AnnDaw]

Hi Sue I totally agree with what you say about the research into xxx neg it is at the top of the list. I have been asked to take part in a clinical trial which I have agreed to. Results take about 5 years to come in and hopefully will help others further down the line. That being said I feel very positive and won't sit around waiting to see if my cancer comes back or not. Whilst we sit around worrying about it we are not living life to the full. Xxx 

[Sue H-S]

Hi Marina,

that must have been quite a shock - and you must be worried.

When did you have your initial op? How long ago?

A decade is a long time ago and chemo, combination of chemo drugs have changed dramatically since then. Also chemo treatment for lung and colon cancers is different to that of breast cancers, too.

Unfortunately there is only so many funds universities and cancer charities can raise, to facilitate the relevant research - and then, of course the question is - which of the many cancers do they concentrate first.

Triple negative BC is one of the priorities for research at the moment - and recently trials have started (only this year) in the UK to explore the effectiveness of the newly researched immuno therapy, which has given positive results in other cancers in the US. So many adjustments have to be made for it to attack TNB cancer cellls and ensure a positive outcome for the long term - so it will take time. But at least the trials have started, which is good news.

I am not a medical person, nor a scientist, but take a great interest on what is being done to help us beat this more than challenging diagnosis.

Huge Hug

Sue xxx

[Whitfield]

Oh Marina such a shock . Have you already had surgery and this is a reoccurance?

Do stay in touch and good luck.

Pamx

[Marina]

Hi ladies, A bit of bad news. Had surgery last week to remove 3 cysts in same place as original tumor, and one of the cyst walls was a tumor. I ask myself how can a tumor develop whilst having chemo. They decided to wait till I finished chemo before operating. And I've just read an article that a decade ago they realised that chemo is no good for breast, colon and lung cancer. It can only reduce tumors.
Now waiting for another op to get clear margins.
Marina

[AnnDaw]

Hi Warcol I started taking supplements again after rads as I figured whilst having ops and other treatments it's being kept at bay. Don't take my word for it though ask them who know best like your breast care team. Wherever your at with treatment though I was told some supplements may affect chemo.xxx 

[AnnDaw]

Hi Suzanne holland and barret stock solgar products and they have turmeric root extract no sugar salt starch etc. 1 per day 60 capsules 15 99p hope that helps. Xxx 

[Sue H-S]

Hi Suzanne2

the best one I have come across, and it is not cheap - is full spectrum Curcumin, wich is also free of sugar,salt, gluten, wheat, dairy, soya, yeast, preservative, sweetener, artificial flavour, colour and starch. It is a Solgar product. It may be an idea to google this product, as they explain very well on their website why their product is called Curcumin rather that tumeric. Curcumin is the substance in tumeric, which is so beneficial to us.

https://www.solgar.co.uk/SolgarProducts/Full-Spectrum-Curcumin-185x-Softgels.htm

don't forget to check it against and medication you are on for contraindications.

Hope this helps

Hugs

Sue xx

[Warcol]

Hi
When do you start taking tumeric! Ive had my last chemo and now due for surgery and rads when is best to start? Xx