TRIPLE NEGATIVE Post Surgery Results

Hello everyone, I had r/s MX and ANC (Level 2) on 18 July - recovering really well apart from seroma which is now quite tender and starting to get in the way of daily routine. Had post-op results on 31 July - no longer two-foci as indicated by initial core biopsies, instead one larger 5.5 cm tumour, with 12/15 nodes affected (guessing this is pretty serious!). Will not benefit from hormone or targeted therapies, but have been told I should respond well to chemo and rads. My consultation notes confirm IDBC Grade 3 (no stage mentioned) Triple Negative Type. CT and Bone Scans this week before meeting with Onc hopefully within two weeks - chemo is likely to start sometime in September. Would love to hear from any Triple Negative ladies out there, either just starting the treatment process, part way through, or on the other side of it! Thanks.

Hi Elma55
Sorry to hear about your diagnosis but these forums are great for support and help.
I am triple negative as well. Had first lump removed in 2011 left breast had WLE chemo - EPI _ CMF and radiotherapy. Unfortunately I have just had another triple negative lump removed from right breast!!! Had WLE and saw oncologist today am starting chemo on Tuesday this time having 6 taxotere and the radiotherapy again. My nodes were clear both times.
I am also being tested as have had in both and as under 50 may have faulty gene.
There will be a thread for people starting there chemo in September that you should join and you can “speak” to people going through it at same time as yourself.
I think that triple negative counts for 15% of breast cancers so not as common as some.
Good luck with your scans hopefully they will be all clear
Take Care

Jill xxx

Hi elma55

I had a triple neg grade 3 BC 14 years ago was treated with lumpectomy, chemo then rads. Had another primary last December in othe breast also grade 3 had 4 taxotere first that shrunk 5cm tumour to nothing then mx and now on rads. I am a BRCA 1 carrier so hence having BC twice.

Hope all goes well in your journey. It might seem a long haul but you well get there and put all this behind you very soon. X

Hi Elma55

I have also been told have TNBC. Had right mx in July 5/19 nodes infected. Starting chemo in couple of weeks then on to rads. Have pre chemo assessment and heart eco tomorrow and ct scan on Thursday which I am quite worried about. xx

X

Tolliebelle - thanks for your reply and sorry to hear about your second diagnosis. At this stage, I don’t know if I’m eligible for genetic testing given my age (55) but I am more concerned that I might have passed BRCA1/2 (if I have either) to my daughter so will definitely make enquiries. Hope all goes well for you.

Wendy56 - Thanks for your reply. Sorry to hear you’ve had a recurrence but a 14 year gap is pretty amazing given the nature of TNBC. Prior to surgery, my Consultant thought I might still be Herceptin positive so recommended mx first - at that time my main tumour appeared to be only 1.5 cm (although it felt much larger to me) with a seperate area of thickening and one positive node identified through ultrasound/FNA. I do wonder, if I’d had chemo before surgery (regardless of TN status), would the tumour have shrunk thus proving that chemo was working and would I have had wle instead of mx - of course I’ll never know. Hope all goes well for you too!

kaz1961 - Looks like we’ll be going through the rest of our treatment at roughly the same time! I had my first ever CT scan today, was very anxious prior to, but genuinely surprised at how easy the procedure was. I was having a scan of the thorax, abdomen and pelvic area so had to arrive about an hour before the scan appointment so I could have a contrast drink (fruit-flavoured so not unpleasant), then I changed into a set of ‘scrubs’ (wanted to take them home with me but they wouldn’t let me!), answered a few general health questions, had a tiny cannula fitted in readiness for the dye that they used during my scan. The scanner wasn’t at all intimidating, looked like an up-ended polo mint, not very deep so no feelings of claustrophobia. The photography was finished very quickly and I was able to put my surgery-affected arm in a position that suited me. I had also been concerned about my seroma ‘clouding’ the images but this was not a problem. I now feel much more confident about my Bone Scan on Wednesday. Hope this helps and good luck for tomorrow and Thursday!

Flori35 - thanks for your helpful comments. It’s good to know that all of this is doable. I’m guessing I need the scans because of the amount of nodal involvement. I will PM you if I have any questions - thanks for the offer! Must be a good feeling to be close to the end of all treatment - hope all goes well for you!

Hi Elma55, yes I think we will be going through it at the same time. When do you get your CT results? Thats the bit I am dreading. After my chemo assessment this afternoon will have to start looking at hats etc. Cant believe will have no hair in 4 weeks time. I still think this is all a dream x

Hi kaz1961, I’m guessing my scan results will be sent to my Onc as my next meeting is with her, although it was my Con who requested them. I’m trying not to think about the results until I have to - was hoping that the recovery period between surgery and further treatment would give me a bit of a ‘holiday’ from all of this, not just yet though! Sounds like a chemo assessment is yet another date for the diary. Yes, possible hair loss is a bit alarming, but only temporary, keep telling myself as long as I can get through the treatment without picking up an infection I will be happy …

Hi Elma55, I know there is not much of a holiday from it all. I have had my heart checked this morning and now assessment this afternoon. Am seeing senior onc next wed as the onc I saw last week was very brutal with her deliverance and I was even questioning whether I should have chemo? BC nurse said speak to the top man because i shouldnt have walked away from onc feeling negative. Might get a date later today to start chemo there are 3 sessions at my local hospital and 3 sessions at another hospital further away. Also my rads will be at this other hospital 15 sessions 1 per day!!!

hi Elma

i had tnbc 4 years ago (hormone pos 3 years before that). i had grade 2 stage 1 no nodes affected… had wle, chemo and rads. two years ago i got tnbc again in my chest lymph nodes and had wle, chemo and rads… axilla lymph nodes still neg… had all the scans, ct, bone scan chest xray and although my bloods were abnormal for my liver the scans were all normal.
TNBC is unpredictable… my friend had tnbc in 2008 with 12/20 nodes positive, and no recurrence i had neg nodes in 2009 and still had a recurrence in 2011… she has brca1 mutation and i have brca 2… but still here to tell the tale.

chemo’s not fun but you get through it. good luck xxx

Hi Elma, I was diagnosed in Feb this year with grade 3 TNBC followed by WLE and SNB neg. I had my last FEC chemo last Monday, aand have being doing a happy dance since. I start my rads next week! Chemo is doable and side affect very from person to person, but it was not as bad as I thought it would be and rads should easy in comparison. I never looked at the length of time it took just took each session at a time, can’t believe I have now finished that part.
I am having genetic testing in a couple of weeks as my mum and cousin also had BC, I was referred by my surgeon, so just ask.
i would definetly join the September chemo thread, I have found it invaluable on this journey every one understandwhat by you are going through.
good luck on your journey xx

Hi Kaz1961 - Glad your assessments are out of the way. My first Onc appointment came through today - end of August so bit of a wait, but also bit of a break! I think I can have rads at my local hospital but will have to travel 30 miles each way for chemo which will be a pain, esp if we have a Winter like last year. Hope your new Onc puts your mind at rest.

Hi Lulu 34 - thanks for your reassuring comments. I didn’t know it was possible for one person to have more than one (cancer) cell type - this disease is so complicated! Sounds like you’ve had a bit of a battle - hope you’ve banished it for good this time. All the best!

Hi Philomena_b - great words of encouragement, thanks! I’ll be pushing for genetic testing. Enjoy your happy dance!

Hi love I am out the other side hopefully.I was dx with TNBC in September 2006.I had chemo [4xfec and 4xtaxotere] and 15 rads after a WLE and node sampling.So far I have been clear :slight_smile: Good Luck xx

Wow Horace, that’s good to hear, all the best to you!

Hi Elma,
I am triple negative and waiting for my appointment with oncologist. The lymph nodes are clear but am also terrified having read some very scary things about TNBC. Good luck and hope it all goes well for you.

Hi Jaxg, Great news that your nodes are clear! I think there is probably a risk of recurrence with every type of breast cancer and whilst TN ladies don’t yet have the back-up of something similar to hormone/targeted therapies, it doesn’t necessarily mean that we will definitely get a recurrence - there are plenty of TN ladies out there who haven’t. The waiting (as always) is the worst part, hope all goes well for you too.

Jax i echo what elma has said… Most people with tnbc never get a recurrence and do very well after treatment even without targeted therapy as tnbc tends respond better to chemo than other types of breast cancer.

lots of the terminology used to describe tnbc is very negative, but in actual fact the average survival for hormone positive bc is around 90% and for tnbc is around 75%… This is where the ‘poorer’ outcome tag comes from but its still pretty good from my viewpoint.

also the stats they use are the ones for 10 years in the past not for 10 years in the future and they can learn a hell of a lot in 10 years… Lost of the treatments used today werent invented 10 years ago.

heres to the next 10 years… and beyond!

Lulu xx