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New Triple Negative diagnosis

26 REPLIES 26
jomich50
Member

Re: New Triple Negative diagnosis

Hi everyone

I am exactly the same about Triple negative, and know for sure that is me now, Invastive Ductal BC Triple and 20mm and swollen nodes but won't know about how many yet.    I rang mcmillan and they were super explaining it all to me felt better now try not to google.     Have my oncologist apt next week.    To top it all I have to get some dental work done before now too, going to feel battered and bruised!  Chemo likely to be first for 4 months I think every 3 weeks starting by end of month!  Scared of that and the picc line and suppose need covid swab too!  I have two young boys 7 and 11 they aware but know this will be eye opening for them.     I go through stages of up and down feel better when I know what is going on and have plans.  Work being great, had compassionate leave, now doing a bit of sick leave so I can sort things out thne adjusted duties throughout.   People are right don't get hung up on Triple negative, I am just glad I went to my first mammogram and they caught things early.  Also MRI spotted some suspicious scattered paint likely v early sign of another tumour coming, but biopsy tomorrow to be srue then will be masectomy.  Do you think I will need chemo after too, guessing surgery after chemo so likely next year... good news it hasn't spread from scans at least.     Good luck to all, will join the chemo monthly group once I know if October or November x

ttyler
Community Champion

Re: New Triple Negative diagnosis

Hi everyone,

I had surgery first and then chemo and are about to start radiotherapy at the end of the month. I can relate to what you are saying about feeling you have got this and then certain time’s worrying about the triple negative diagnosis and wandering if it will come back. In my mind I know the cancer has gone as I had clear margins and nodes after surgery, but then I think if I have in my mind that it has gone will I tempt fete and it will come back? Luckily the days of negative thoughts are much less often than the positive. I also read on the site, think it was the lady that has been 4 years clear and shared her success story in a post that there will always be times when you worry that the cancer will come back, but as the days go on these thoughts become less.

 

 In regards to node involvement, this is not necessarily bad news and mean they have done what they are meant to and caught the cancer before it spreads. My oncologist explained to me they the chemo will kill all cancer that has escaped the primary site and that is why you have it with a triple negative diagnosis. It’s you best friend basically! The icing on the cake.

 Stay positive and hold onto one another because together we will beat this!

 Lots of love 💕 

Tara xxx

LouJP
Member

Re: New Triple Negative diagnosis

Hi

Remain strong and positive - I didn't get too concerned about the whole Triple negative bit - think just decided so many different types and the treatment plan was put in place very quickly and it is treatable, mine had gone after chemo so surgery was removing the footprint and the radiotherapy was the icing on the cake.

Of course every mammogram I will be worried sick and emotionally I am all over the place but all the jargon they use is scary in itself (and I did use dr google oops).

We all seem to have it in different orders etc. too.

I am not on medication at all now and for that I am also very thankful.

Keep us posted.

xx

 

whiters14
Member

Re: New Triple Negative diagnosis

Hi everyone I too have had a triple negative diagnosis. I’ve had a lumpectomy and nodes removed no spread to the nodes and start chemo on Monday.

I have been really positive as my team have said it’s treatable and after the lumpectomy it’s about preventing it coming back, however today the triple negative is playing on my mind. Am I being too positive!!  I have two boys aged 6 and 10 and I really want to be strong and survive this for them. I can’t let it beat me!! 

LouJP
Member

Re: New Triple Negative diagnosis

Hi

I did have chemo - ECT - then surgery and radiotherapy - the works.

Yep the wording is scary - i remember having to google!!

Keep positive 

xx

jomich50
Member

Re: New Triple Negative diagnosis

Ps happy birthday to your mum, I hope 2020 goes away very soon, what a year, hideous can't wait to see the back of it xx

 

jomich50
Member

Re: New Triple Negative diagnosis

Thank you for you post.   It is reassuring to see success stories when nodes involved, the letter to my GP I got copied in scared the life out of me, but I rang McMillan (as couldn't get my nurse) and they talked me through it and the words and the fact that Doctors used words that Nurses don't like as well. 

Did you have Chemo or just surgery?  I think if I am TTBC then that maybe reason for Chemo.  I am not even sure what the node involvement is, the node showed a lump I think at my ultrasound as well as the right small lump but the letter just says right auxillary which means it can spread hence all the scans, what joy there are.

Sometimes I can't believe it is me going through this, my emotions are up and down but lucky to have great support from family friends and work.   xx

 

LouJP
Member

Re: New Triple Negative diagnosis

Good luck and let us know the final results please.

I had lymph involvement too and had full lymph removal the same time as the lumpectomy.

Although no history of breast cancer in the family, my consultant was insistent on genetic testing (a questionnaire, phone call and blood test) and it came back negative.

This site and Macmillan are amazing, they step in where the NHS dont have the resource too.

Happy 50th - my mum was 90 on Easter Saturday this year and because of Covid and the fact that I was shielded, could not see her - we have made up for it though since and although physically she cannot help me, we speak every day.

2021 can only be better than 2020.

xxx

 

 

 

jomich50
Member

Re: New Triple Negative diagnosis

Hello everyone,

Your stories are really helping me.    My name is Jo, and one week ago I was diagnosed with breast cancer, grade 3, possibly triple negative (will find out Friday) as ER & PR were both negative and waiting for third result.   I agree hearing the word triple negative is scary and I understand it is more about knowing how to treat it and treatment has advanced so much in last few years.    Likely I will have chemo first..  I have two sons, 7 and 11, have told them as advised, it is pretty rubbish now between all the scans, apt and then friday should have all test results.  I have a small lump 20mm in right breast and there is node involvement which is scary so be so pleased once scans done and results in.        there is a history in mums side so wondering if TNBC then will be offered genetic testing.    I am very luck the support from work has been overwhelming and friends and family but have my bad days whilst waiting and this forum is great as were the macmillian nurses I rang yesterday as I received the copy of the letter to my GP and some words used scared the life out of us, but they explained it better.     Good luck ladies, sounds like a rough year ahead but we are in good hands.    2020 what a year .... I am 50 just had my 50th few days before result after every treat we booked had been cancelled in the year !  xxx

LouJP
Member

Re: New Triple Negative diagnosis

Hi

Yes the waiting is endless - I went thru xmas and new year not knowing.

Please let us know the outcome

x

ttyler
Community Champion

Re: New Triple Negative diagnosis

Hi Christineliwillb,

 welcome and good on you for posting, I know how hard the first one can be!

 I agree the waiting for test results can make you feel anxious, but remember your medical team need to know all of the details so that they can get the best treatment plan  for you. Yes triple negative breast cancer is aggressive and this puts fear into you, but it can be treated and many people survive for many years afterwards often dying from non cancer related reasons. It may be aggressive, but I see it as I have more aggressive feelings towards ensuring it never takes over me. Not sure about anyone else but since the moment I was diagnosed I have been determined not to let this beat me! 

 A lovely lady called Shi that is a great support to the site has listed survivors of triple negative breast cancer. It may help to look up their stories?

 I do hope you get the news you hope for when your results come through. 

 Keep posting on here when you need to or if you need support. You are not alone.

 Lots of love 💕 Tara xx

 

 

ChristineIwillb
Member

Re: New Triple Negative diagnosis

Thank you for a positive post, I have just been diagnosed with TN, but have to wait for more mammograms, an mri scan before seeing an oncologist, it is the waiting to have these further tests, the doctor mentions the word aggressive and then you are just left in limb.  I joined today, my first post.

ttyler
Community Champion

Re: New Triple Negative diagnosis

Hi ladies,

I too am part of team triple negative! My name is Tara, I am 37 years old l, have 2 boys 9 and 7 and was diagnosed on the 20th March this year.

 I was unable to have chemo first due to COVID. I had a therapeutic mamoplasty on the 9th April. This is a lumpectomy to remove lump and margins with an uplift. I was previously an F cup. Would say I am about a D cup now. 

 I began chemo in the 11th June, 3 cycles of FEC and have just had my second of 3 Docetaxel. Fingers crossed I should finish chemo on the 24th September. I will then have radiotherapy and an uplift to my good side. In my opinion chemo has been doable. I found that with FEC I felt nauseous, but was not actually sick. Take the anti sickness they give you when you feel sick, don’t wait to be sick before taking them. Also when the C part of the FEC was being administered I had a sinus headache pain. Check with your team, but aa long as your temp is down  below 37.5 I was told you should be able to take a paracetamol before chemo to help with this. Also I found sucking a mild mint helped with the nasty salty taste in my mouth. 

 Docetaxel has been different. I have not had the nausea feeling or been sick so this is a bonus, however I did get oral thrush. No problems just called the rapid response number they give you and antibiotics prescribed, which had got rid of it. 

 When I found out I would be having chemo I said to my oncologist I don’t really want to be sick as I wanted to help take care of my 2 boys. The youngest had aspergers and although my husband is great with him it is down to me to help him sequence what is happening in his mind. I have taken the steroids and sickness tablets as advised and have not been sick. I get up with my boys each morning and although it takes me a little longer to do things I feel I am still a I’m and can be part of their lives. Like others have said take help when offered. My mum stays over the first 2 nights after chemo to help with the boys so that my husband can focus on me and my Monster in law does my washing for the first couple of days. Nicest thing she has ever done for me lol 😝 

 in regards to telling people about what you are going through, this is totally your choice. I work in a school so went and told the head teacher right away as I had to shield ready for my op. I am not at work for now and don’t return until I feel well enough. Remember Cancer is an illness you need to recover and feel good in yourself first!

 We were just in the process of buying our first house when I was diagnosed. Luckily completion was delayed due to the build not being ready, so we were able to pull out. I can’t imagine being faced with a diagnosis and having to pay a mortgage? I really feel for you ladies with mortgages.My mum recently brought a house that she refurbed and she has let us move in, so I rent off her at the moment. Family rates lol. I did used to be a mortgage advisor before having the boys. Check your policies because, critical illness or accident, sickness and unemployment cover may pay off your mortgage without terminal illness. This will take the stress off.  I hope this post has answered some questions. I am always happy to share my experiences if anyone needs me.

 Oh and ladies, we will beat this together. Remember, stay focused and where there is hope there is life!

 Love 💕 and hugs to all 
 Tara xxx

 

mumbear3
Member

Re: New Triple Negative diagnosis

Hi,

I didn’t want to scroll on by... I was diagnosed at the beginning of lockdown with TNBC and all your fears are mine too. I’m 41 and it hit me like a train!
Fo me Chemo wasn’t an option as it had been cancelled for most patients because of Covid. I was booked to have a mastectomy- 2 days before the op, they cancelled it and I began chemo the following week (22nd May). I’ve just completed 6 of 8. It’s tough but each round, you’re one step closer to completing. I haven’t been scanned since end of March as the scan showed no lymph node involvement.. This scares me as what if I get that curve ball that it actually has and they were wrong! I also don’t know how much it’s shrunk but take comfort in that I can hardly feel it now (it was 3cm). 
Dr Google is evil and you only find the horror stories. As tempting as it is, only go on trusted UK sites like here and Macmillan. 

I’m also currently awaiting Gene testing with GOSH. I need to know for my children’s sake (1 girl, 2 boys). 
I also have life insurance but it only pays out if it’s terminal - if it can be treated, then they won’t.. but defo follow up with your policy. 

On the telling people, because of lockdown I decided to only tell close friends and family. I felt I didn’t need to share it but that’s just me as I didn’t see anyone. But as we open up more, that might change...  I have a wig, false eye lashes and the most amazing microfilling pen from benefit for my eyebrows - not that I go out much but when I see friends in my garden, I feel me again!

Sending you lots of love and strength. we all have a bumpy road ahead and fears but positive thoughts as much as you can.

xx

helpplease
Member

Re: New Triple Negative diagnosis

That is very encouraging, Emma! Hope the treatment is successful and continues to have minimal side effects x

Emma_B
Member

Re: New Triple Negative diagnosis

Good news on the critical illness. 

I'm in the exact same treatment plan, followed by radiotherapy. It’s not been too bad so far, just lots of naps required but I also get lots of good days where I feel totally fine. 

x

helpplease
Member

Re: New Triple Negative diagnosis

Thanks so much for your replies. We are actually looking into critical illness payout at the moment. We have it and I remember saying to my husband “what a waste of money” but hey maybe not! It seems too good to be true they will pay off the mortgage when I hope this is a temporary thing but hey I won’t complain if we have a windfall to hopefully enjoy lovely holidays in the future with what we’ll save on the mortgage!

 

i had a letter from the hospital today saying I am not eligible for a trial here because I am androgen positive. This is the only thing my otherwise amazing team didn’t mention to me. Does anyone have any idea what relevance androgen status might have on my treatment or prognosis?? I have been told my protocol will be 4 cycles of Carboplatin/paclitaxel and 3 of EC before surgery. Lumpectomy maybe, or possible double mastectomy if my genetics are wonky.

hope you are all in good health today and thank you again x

Emma_B
Member

Re: New Triple Negative diagnosis

Regards telling friends and family, I was happy to let people know as I don’t like hiding things and tbh I don’t see the need to. I didn’t, however, put anything on Facebook until recently and that was only because my husband is doing the CRUK cycling 300 miles in September thing. 
With a few friends I text them first to see if they were free for a call and then text back to say “I’ve got some bad news”. I wasn’t worried about ruining their day as such but I think someone needs a little warning. 
It got a bit hard to keep telling people and going through it all so I let them pass it on to other friends for me which helped a lot. 

I now have a private Instagram account where I can keep everyone posted on what’s going on. Everyone would keep texting to ringing to see how I was, which is obviously lovely, but it got difficult to keep going over everything. 

Regards work, I have a friend from chemo who’s managed to work throughout (at home). I think she does 6 hours a day 4 days a week . She’s struggled though some days. I unfortunately/fortunately left teaching in December before ALL this happened so haven’t been able to get another job. I’m kinda glad. Still waiting for my critical Illness pay out though. Have you checked whether you got that when you got your life insurance with your mortgage?

 

take care, emma x

 

Emma_B
Member

Re: New Triple Negative diagnosis

I had a genetic test. Took about 5 weeks to get results so I just tried to just forget about it. I’m learning to try not to worry about things I can’t control, especially where the worrying won’t make any difference to the outcome. It’s hard though. 
So many things to worry about 😬

LouJP
Member

Re: New Triple Negative diagnosis

Hi

I can't help on the fertility stuff (I was 54 when diagnosed) sorry.

On work I have continued to work throughout (at home as we shut the office once covid hit) as although have had support, it's a small company and I need to pay my mortgage also.

Telling people is hard but I just wanted people to know so people could decide if they wanted to be part of my journey and tbh I am a wear my heart on my sleeve person so all my close friends would have known something even if I'd kept quiet.  It is amazing when people do know because support will come from unexpected places - people will react differently but also remember it is your journey and you share, tell them as much as you want to share and tell them and don't be overwhelmed with other people's opinions, advice etc - take your advice from your medical team, here or wherever you feel comfortable.

Good luck

xxx

 

helpplease
Member

Re: New Triple Negative diagnosis

Oh also, did anyone else do egg freezing? We were just about to start trying for baby no 2 but I am fearful of delaying treatment...

 

also did anyone else do genetic testing? I will do so, but worried I have passed it on to my baby.

helpplease
Member

Re: New Triple Negative diagnosis

Thanks so much everyone for your replies and sorry to hear you are also going through this. I feel a little better a few days on, although I am constantly fearful of another curve ball of eg being told it’s spread. I have also been put on beta blockers by my gp which had taken the edge of my anxiety. Still struggling to sleep though. It is a good point that my doctors also have not emphasised their tnbc aspect, and also more stated that the treatment will be aggressive rather than saying that about tnbc.

i am meeting my oncologist today (wow, I have an oncologist now - that’s weird) and I’m hoping to feel positive coming out of that. I still have to tell everyone other than one friend who had bc and my husband. Dreading telling people - any tips on how to do that would be appreciated! I hate sympathy and the feeling that I have ruined someone’s day. MIL will be especially difficult as I predict I’ll end up comforting her rather than vice versa... Also she’ll want every detail, want to send some bull**bleep** healing remedy etc... 😆 

 

what is everyone doing about work? Tbh I would rather take time to spend with my baby and focus on health but I think I will have to keep working so we can pay the mortgage. 

Emma_B
Member

Re: New Triple Negative diagnosis

Hi,

I have also recently been diagnosed with tnbc and I have a very active 4 year old.
My lump was about 30mm and 3 nodes involved. 
When the doctor first gave me the diagnosis he didn’t dwell on the triple negative bit and it wasn’t until later that I read what you’ve probably read online. 
However, my oncologists have always spoken to me like this is going to be treated aggressively and we’ll beat it. My chemo has so far shrunk the tumour so much that I can no longer feel it (it was close to the skin). I am also on a clinical trial so I’m getting an additional chemo drug too. 
Tbh, I am still fearful of the tnbc, I am managing to put it to the side for now and just focus on all that’s being done to get rid of it. 
It is super hard with a young child. Luckily the first 4-5 weeks of chemo were surprisingly easy and it’s only now that I’m struggling a bit. Take all the help that’s available with your 1yo, we even decided to send our son to nursery, despite Covid, so I can rest as much as possible. 

If you have any more questions please feel free to get in touch. 
Sending hugs, Emma

LouJP
Member

Re: New Triple Negative diagnosis

i agree with dr google but the breast cancer site is very informative as is Macmillan and the Cancer Research site - these have tended to be my go to places i.e. official cancer focused sites

good luck all

xx

 

Shi
Community Champion
Community Champion

Re: New Triple Negative diagnosis

Please do keep off dr google, a good book that helped me is surviving triple negative breast cancer by Patricia prijatel, it’s not for everyone but it did help me, she is a tnbc survivor. Others are Robin Roberts and Joan lunden (USA tv presenters) and there are lots of us tnbc survivors here too. Take it one step at a time and one treatment at a time, use the threads for questions about surgery, chemo and rads when you know what your teams plan is for you. Also ring the number on here and use the someone like me option and the speak to a nurse option. Tnbc is treatable and your team will know what to do 👭💕💕Shi xx

LouJP
Member

Re: New Triple Negative diagnosis

hi

our journeys are all different but i was diagnosed on 3 jan this year with triple negative and lympth.

after 2 chemos went into lockdown but 4 chemos more, tumours had gone, lumpectomy on 13 july and full lymph removal just need radiotherapy to rubber stamp.

wont lie cheno was awful at times but i am here and determined to carry on.

fingers crossed you will be the same - stay strong

  xx

helpplease
Member

New Triple Negative diagnosis

Please help. I am 38, just been diagnosed with triple negative, tumour is 2.7cm, and a biopsy of a lymph node also positive. I had resigned myself to the cancer diagnosis but the TN status and the node were the worst news I feared. I have a one year old and I feel I’ve been handed a death sentence. Will the treatment only make me feel awful and then in the end it doesn’t work? I want to see my baby grow up...