TNBC Grade 1

Hi there,

I guess they must have assessed that it’s localised enough not to need a systemic attack of chemo. Mine is grade 3 stage 1 so it’s chemo for me. Have they offered you genetic testing? I have just been through this and again, think it’s something that should be offered to all TNBC patients (under 60) - for some reason if over 60 sadly not offered!

I would be asking more questions I think.

Jan x

Hi Jan,

Many thanks for taking the time to respond.

Yes, I have been offered Genetic Testing as I am 54, so will be going for a blood test soon. I will definitely ask more questions when I go for my CT scan on 6 June. 

I hope your treatment is going well if it has started and you are not feeling too poorly?

Lynnx

Hi Lynn,

I had the genetic test too as at 59 I just made it! It took 12 weeks to come back and unfortunately I am a carrier of the PALB2 gene (pretty rare) so have stark surgery choices to make.

Really interesting you have been offered a ct scan - I haven’t here in Leeds and neither has my friend also having same treatment iin Leeds for TNBC. We keep asking why and the say it’s a national protocol not to overscan - but I may have to insist. Did they say what specifically they were looking for on ct scan or is it just elimination of anything anywhere else? They keep telling me there is no evidence of any spread and I keep tellling them that they haven’t looked! (Apart from fact that lymph nodes are clear).

I am half way through chemo now - to be honest I have tolerated it pretty well - none of the the horrible side effects people talk about apart from some days of tiredness. I have cold capped and kept my hair - but it’s all a journey on the emotions. I am a fairly positive person and am mostly remaining strong.

Janx

Hi Jan,

Sorry to hear you have the PALB2 gene and you now need to make difficult decisions. 

No, its the same here in Southampton re. Scans! The CT scan is not a diagnostic one, but the one they do before I start the radiotherapy - I think it's to see where they need to target! I know what you mean as I've not had any other scans and sometimes wonder what else could be happening in my body, especially as I had my lumpectomy on 17 March and I am still waiting to start Radiotherapy! Like you my Lymph node was clear so I have not been offered any other scans. I was a little concerned as I've been having back pain a little but the Oncologist just said that we are all getting older, and will experience all these aches and pains!! Great!

Great to hear that you are tolerating chemo and you've not lost your hair.

I too am trying to be as positive as I can be but totally understand the emotionally journey! Cancer sucks!!

Lynnx

Hello did you get offered immunotherapy also? And do you mind me asking what chemotherapy you are on and how often please? Just been diagnosed with stage 1 grade 3 and trying to decide between two treatment options per surgery 

Hello,

I wasn’t offered immunotherapy  as lump was less than 2cm and no lymph node involvement. I started with three rounds of EC (once every three weeks) and have now had 9 weeks of Paclitaxel weeekly (last one this Friday) and three of carboplatin on week 1, 4 and 7.  I had a complete response to treatment half way through which was great. However I have a faulty gene mutation which is not great. Basically it has taken 5 months to get through treatment and I will see the breast surgeon tomorrow to discuss the next stage.

Hope this answers your questions,

Jan 

Thank you it does. How have you found treatment? Was the weeks you had multiple drugs the worst? Was your first one the worst? So so conflicted on which treatment to choose I’m finding it very stressful and have to decide by the morning.

and great news on your complete response but hopefully the gene mutation hasn’t complicated things too much. 

I found it all tolerable to be honest - although have been very tired this past few weeks and I have at times felt spaced out. No other real side effects for me. I have even kept my hair as did the cold capping and it worked for me.

EC is meant to be pretty harsh, but for me it was ok, Paclitaxel less so. I think docetaxel is meant to be harsh too - I do know people who have struggled with this but everyone is different. I wasn’t given different options and would have struggled if I had been I think.

I kept to a very healthy diet, out walking every day and yoga - I think these kinds of things make a difference to how you manage the journey - plus building in treats and resting when the body says rest!

The gene mutation is tricky as it probably means a double mastectomy even with complete treatment response if I want to reduce my risk of recurrence from 30% to 3%.

There does seem to be always another curve ball to deal with - just have to be prepared for that and deal with them as they arise.

I think I would be asking the oncologist what they would be choosing if it was them in your situation - they like to put it back to the patient (in this patient led world) but in all honesty I want their expert opinion that they have spent years training to reach as opposed to my thorough but possibly misguided googling.

Yes I am very much struggling to have to decide between the two. It’s like 12 weeks intensive regime carboplatin with pax and then pembro with better odds of complete response and better rates of non reoccurrence. But longer term side effects of pembro. Or go with standard chemo. I asked what they would recommend and he has flipped back and forth with me as much as I have. My mind is fried with over analysing it. My mother has had triple negative twice (separate cancers in breast not recurrence) and has also had her2 positive breast cancer. But genetic tests her side have come back negative. However they think it must be some kind of genetic situation for me to get it at 36. I think double mastectomy with implant or other reconstruction ideally retaining the nipples although loads of great options now with tattoos would be my preference in your situation to give best chance. Glad your treatment experience so far has been tolerable