Newly diagnosed triple negative

[Whitfield]

Well done Amanda yiur almost there. Tax is hard to do and you're doing it.

Still have pain and stiff shoulder. Stitches still not completely out! Will this affect rads sessions??

Pam x

[Amanda10]

Just popped on to wish you all a happy Easter . Hope you are all having a good rest. How you doing after the surgery Pam? Hope you are healing well. Ive got last t this Thursday if bloods ok . Can't believe six months have pasted so quickly xx

[jackiek55]

Hickman line goes in chest rather than in the arm. As I've had nodes removed from both sides there is risk of lymphoedema if they use the veins in my arms. Glad to hear that docetaxol not too bad, Amanda. I had F, E and C last time but not together. I had Epi on it's own and then CMF

[Amanda10]

Sorry to hear you have to go through this **** again Jackie . I've just had the docetaxol, for me not as bad as fec. I have had the cold mitts on hand and feet and wore black nail varnish to preserve nails. Not had much nausea but felt quite tired. Had 3 so far one more to go xx

[Whitfield]

No I had eight 4 EC and 4 Paclitaxel, surgery then rads....

I think age, size of tumour and node involvement dictate what you get.

What is Hickman line? I had a PICC but became allergic to it.

Pa, x

[jackiek55]

Well here we go again, 6 rounds of docetaxol and cyclophosphamide, followed by rads. Due to start 22 April after having a Hickman line fitted. Anyone had this combination before?

[Whitfield]

Typo. - replace nine with none...px

[Whitfield]

Jackie. Good luck with results. Let's us know how you get one. Px

[Whitfield]

Amanda - what they said to me is the rads are based on your first diagnose position just to be safe. I'm having 20 as I had Cancer cells in my nodes. My lump was 31 by 21 mm but this completely disappeared with the chemo and four out of 24 nodes showed signs of decease but nine had viable Cancer cells in them. Basically my hospital give you the rads according to how yiu first present.

Hope this info is useful.

Pam x

[Amanda10]

Good luck for your results today Jackie. Hope your bad ear clears up soon Pam . How many rads will you be having Pam ? I think I will be having them after surgery but they say they will make final decision after op. I just want to throw everything I can at it. Im glad my chemo will be finishing soon but feel bit nervous about it as well . Hoping everyone is doing ok xxx

[Whitfield]

Got tats and appt so feeling like progress is being made. Ear drum is a mystery....

[jackiek55]

I hope your meeting went well Pam. Sorry to hear about your eardrum. Was that caused by chemo?
My results day tomorrow and hopefully my drain out as well. Getting pretty uncomfortable now! Will let you know my treatment plan after appointment, Jackie xx

[Whitfield]

Fingers crossed.

Went to GP yesterday re running in ears which I thought was a SE of chemo but apparently I have a perferated ear deum😿 so more hospital visits at some point.

I'm hoping the hositial today will look under my other arm as I'm sure I have a lump there.

Good luck everyone.

Px

[Amanda10]

Hope your rads meeting goes well today Pam.
Hoping everyone else is doing ok. I'm off to see onc later then last t next Wednesday if bloods ok xx

[Whitfield]

Still working on cording! Will update everone after meeting tomorrow.

Hope everyone is doing good.

Px

[jackiek55]

Hope everyone is doing well. Good luck with the rads meeting tomorrow Pam and I hope your cording has been sorted x

[Whitfield]

Rads meeting Tues next wk. px

[jackiek55]

Thank you Pam and Amanda. I had chemo 6 1/2 years ago, 4 epi and 4 cmf. I didn't work through it as I worked in a college and was worried about infection. The chemo wasn't too bad and I managed without too much nausea. Hopefully it will be the same this time x

[Amanda10]

Yes Jackie let us know your plan. The chemo is doable , a few ladies I know worked through it. I didn't work as I had a few ses but like pam said there are lots of medication available such as emend to help. I've not long had cycle 7 have one more to go. Hope you are going on ok pam ? Have you finished your treatment now or are you having rads xx

[Whitfield]

Good luck Jackie you can do the chemo. Let us know what your plan is and when you start. Just remember that they now have much better anti sickness drugs so let them know ASAP if you suffer from seasickness as that means you are more vulnerable and my need Emend....

Px

[jackiek55]

Just had a call from my breast care nurse, results are in from clearance. One more lower level node with micro traces of cancer so will need chemo. Clinic on Wednesday to discuss further treatment. Relieved that it has not spread further.
Hope the rest of you are doing well xx

[Whitfield]

Still not myself. A bit depressed today. Still feel lump user other arm but hospital cannot see anything!

Px

[Brewster]

Ho are you doing Pam ? Xxx sending best wishes

[Whitfield]

Thanks for wishes. I think I'm down as the pain under the arm will not let up even with painkillers.

Px

[Amanda10]

Hope you go on ok today pam xx hoping everyone else is feeling ok xx

[Brewster]

Pam, good luck with your ultrasound today, hope all goes well. Thinking of you xxx

[Whitfield]

Jackie55'. Thanks for good wishes I'm just so scared I have more Cancer.

You seem to be doing we'll post op. I'm still struggling with much pain and cording. Doing the exercises regularly helps.

Also have rad meeting this afternoon and that is another part of the process.

Pam x

[jackiek55]

Good luck with the ultrasound today Pam x
I hope your op went well on Saturday Teacher39 and you're feeling ok x

[Whitfield]

Cording is very painful. Anyone having node clearance should look out for it as the sooner you get working on it the better.

Nuisance having BC!

I have raised nodes under left arm which is not the Cancer side and am now having an ultrasound for this on Monday. A, sooooo scared.

Pam x

[jackiek55]

Hi Judith, sorry to hear you're back on the roller coaster but your diagnosis sounds good. Do you know what treatment you will be having?
Teacher39 had my 2nd op yesterday to clear my nodes and up and about today, being told to rest by OH but I feel ok in myself. I suppose we're all different.
Pam my left arm is still numb from 6 1/2 years ago so not expecting to get much feeling back this time either. You get used to it. The pain is manageable with tablets but I sympathise with you as I know cording can be very painful.
Jackie x

[RuthieG]

Thanks, the DCIS was 20mm and the invasive cancer was 4mm. I will wait and see what the oncologist has to say when I meet with him. I'll let you know how I get on.

[Judithvr6]

Hi

I don't technically count as triple neg as 22 years ago they didn't even have a HER2 test to make triple testing but I didn't have any hormone treatment so have guessed I was at least ER-.

I was told nothing of size, grade or actual chemos used in treatment but I do know I had 3/8 lymph infected from a random sample. I had wle, radio, chemo.

After 22 years I thought I had put all this behind me but have just been diagnosed with a new primary. Stage 1, grade 1, ER+, HER2- so I know I am a pretty good, bad place this time round.

But I guess I would have classed as triple neg all those years ago. I have requested another 22 years please.

Best wishes to you all and it can be done :):

[Whitfield]

Teacher-39, hope op goes well. You mdu need help the first week as I couldn't get in or out of bed. And ensure you keep bowels running well as some of the drugs bibs you up. Get some pain killers in as well and start the exercises next day.

Good luck.

Pam x

[Whitfield]

Jackie - how's it going post surgery?

I still have pain and now cording. Keep an eye out for that and do the exercises. Top arm still numb!

Pam x

[Whitfield]

I also had chemo first, then surgery and waiting for rads. I think I needed chemo first as I had node involvement and it was31mm so much larger than yours.

Do ask for this discussion re the benefits of chemo and let them know how you feel.

I knew mine was TN as the U.S. biopsy they took a piece for examining prior to starting agin treatment. Sounds like your diagnosis was post surgery.

Px

[Weeannie1]

Hi RuthieG, although I had ER+ BC and not triple neg, my oncologist insisted on discussing chemo options with me when I met with him, even though my surgeon and BC nurse had both told me that I was only to have rads, I was given all the info from my oncologist and I decided to go along the chemo route and I've never regretted that decision. You may find this to be the case, although I must stress that my cancer was lobular and 37mm, while yours is obviously at a much earlier stage. Take care and let us know how you go. X x

[RuthieG]

Hi, no I haven't had Chemo and it hasn't been offered to me, just radiotherapy. I am seeing the oncologist to talk about this on the 16 April. This has just come as a bolt out of the blue. When I saw the surgeon last week she never mentioned it was triple negative. I think I had a right to know and for her to explain what it meant.

[Whitfield]

RuthieG - Sounds like you caught the TNBC early so don't worry too much. There is not much we can do but fight on and you have dine of that already with a positive mind. Did you have chemo as well? I know it must be frightening and annoying that no one told you so register with your hospital that you want to have copies of all letters to you GP. That's what I did and I get a copy of each letter after each procedure which is sent to my GP.

I also think most grade 3 cancers are TN as they grow so fast. Good your nodes are not involved.

Pam x

[RuthieG]

I was originally diagnosed with DCIS in December after a routine mammogram. I had a WLE on the 26 January. No nodes because it was early stage. When I got my results the surgeon said they removed 20mm of high grade DCIS. However they also found 4mm invasive grade 3 ductal carcinoma so they decided they should carry out sentinel lymph node biopsy. Two nodes were removed. When I went to see the surgeon for the results she was very pleased to tell me that the nodes proved negative. She advised me that I would not need any follow up drugs but I would need 15 sessions of radiotherapy. She said that I would hear from the oncologist with a date to discuss this, which I have and I've got an appointment on the 16 April. Today I received a copy of the letter the surgeon wrote to my doctor where she has stated that the invasive cancer is TRIPLE NEGATIVE. This is obviously the first I knew about this and I feel quite angry and upset that no one has mentioned it to me. I have been so positive all the way through this and I've not really been too worried about it at all, but having read about triple negative now I'm not so sure.

[jackiek55]

Home from hospital, not feeling too bad ☺️ Being looked after by my lovely OH. Will start my exercises in the morning. Hope everyone else doing well

[Amanda10]

Hi everyone
Hope your op goes well tomorrow Jackie and also for you on Saturday teacher 39. Hope you are doing ok as well pam and healing well.
Harriet I'm due to have my third t tomorrow if bloods ok. I've had 4 fec already and it's planned for me to have 4 t. I was dreading t but overall have found it better than the fec. I did the cold mits for hands and feet plus black nail varnish. No pins and needles so far and although nails a bit sore they are still on. The mouthwash worked well for sore mouth. I have felt a bit more tired but it's doable. Have you had surgery yet? Xx

[Whitfield]

No one knows how long they have and this is life. Must keep focused on treatment taking a step each time and keeping informed. Survival rates are getting better and I know being TN is hard but we are here for each other.

Pam x

[HarrietHare]

Thank you for your post. I am in exactly the same boat as you.. TNBC and clear nodes. Having the same chemo ( due to start T next week and so far so OK). My kids are 6 and 7 so thank you for inspiring me. I know I can do it, and it's nice to know a survivor!

All the very best to you xxx

[Whitfield]

I'm also TNBX with 4 nodes tested positive for Cancer. I've had chemo already which strunk the tumour in the Breast from 31mm to nothing so had lumpectomy and am now moving towards rads. I know it's very scary but this site does offer good support so keep posting.

I will say full mode clearance is the gold standard but be prepRd with pain relief as its pretty painful but doable. NyQuil must so the exercises as prescribed from the next day after the operation.

I have appt at hospital tomorrow as I have developed cording!

Hair starting to grow back.

Chemo,was four EC and four Paciltaxel....

Px

[jackiek55]

Hi, as you can see from my previous post I am almost in the same position as you. I had mastectomy and SNB 3 weeks ago and am going for full node clearance on Thursday as one out of two nodes showed signs of disease. Good luck on Saturday and keep in touch, Jackie x

[teacher39]

Also just been diagnosed with triple negative BC with lymph node spread. Already scheduled for a lumpectomy and node clearance this Saturday. The combination of triple neg and nodes has not left me feeling very positive.

Would really appreciate hearing from anyone who has triple neg and lymph nodes.

[jackiek55]

Hi thank you for your replies. I've been for pre-assessment at hospital for my Thursday op this afternoon and missed a call from nurse when I went up for bloods. I'd turned my phone off and forgot to switch it on until I got home and too late to ring. I suffer from white coat high blood pressure and that was up at my assessment so hope they are not planning on postponing things. Jackie x

[Amanda10]

Hi pam
I thought I had one big lump but apparently I have some little ones as well ... I think that's why they doing a masectomy . Mri scan showed no lymph nodes involved but they said they can never be sure until op. Xx

[Whitfield]

Brewster - sorry yiur oost was on dare of my operation so I have missed it and not replied.....

Taxol is hard but it will do the job.

Px

[Whitfield]

Sorry you find yourself here again Jackie. It seems so unfair. We are here if you want to now of steam or come for general advice. I'm also in the Seotember sunbeams who have helped me deal with this horrid decease.

Good luck.

Pamx