Diagnosed grade 3 TNBC and lymph node involvement on 24th September and now after MRI and CT scan looking at suspicious liver area and abdominal nodes! Waiting on booking and results of PET scan.
So my initial thoughts are that two seperate areas flagged on CT scan cannot be good … Just wondered if there is anyone else with a similar history and if it all turned out OK? Not a gambling person but at the moment feel that the odds are stacked against me. This last month has been one big nightmare!
So sorry to hear this Tanz. I am newly diagnosed TNBC but have not had any scans but having sentinel nodes removed next Monday and start chemo on Nov 7th I am sure if you search around you will be able to find others in similar positions and everyone on here is incredibly supportive. You can also contact the helpline for a chat. I hope all goes well for you and everyone on here will offer you support along the way.
Xxx
Hi tanz, I was dx 22/10 with grade 3 idc triple neg. Due to some pain (feels like a deep bruise) I am experiencing in my upper abdomen (kind of under my ribs) I had an abdominal ct with contrast. Last week I got the good news that nothing untoward at this time has shown up on the ct but they will keep an eye on it and I’ve got to have further testing once my bc treatment is complete. I won’t know about lymph node involvement until my surgery due in the next few weeks but so far from my mri they look promising. I do have blood vessel involvement in the Breast but they seem to this this is caused by the tumor effectively blocking the blood vessel as opposed to anything else. Please keep us updated. I’ve kind of adopted the idealology that I’m not a stat I’m my own person and That there is no bad news only a new plan x x
How did you get on today. I was in the hospital all morning with my 1 year old son for allergy & eczema testing. Just found out he has egg, nut, gluten & wheat allergies as well as eczema herpeticum so lots going on with that right now which is taking my mind off of me. Yeah surgery first, then chemo (hard hitting because it’s tnbc) then radio after that x x
Awaiting my op date any day now. It’ll be before dec 5th so only a couple of weeks left to wait. I take it your mass is quite large then is it? I haven’t discussed a chemo plan yet only that they’ll throw everything they can at it and I’ll be expecting to be on it for 6 months. Not sure how many rounds that is. Is 3 weekly the norm. We had a further development at home on Saturday when my husband and daughter came down with hand foot & mouth as a result of my sons eczema herpeticum!!! So we are all on anti viral meds now (me as a precautionary measure so as to not delay my surgery) so we are all hauled up at home with the washing machine on boil wash overtime & the place stinking of dettol lol so still no time to think of me. Still at least with the kids it gives me something to keep going. Have you lost your hair if so how long did it take if you don’t mind me asking. I want to donate mine to charity before it makes it to the bin and I don’t know wether to have a bob or just go for a really short pixie style and just be done with it. I’ll go with the latter if it happens pretty quickly. So glad your ct was clear. It’s a weird kind of celebration isn’t it x x
Hi Dcmf/Tanz
Always good to chat to fellow TNs !
Dcmf, omg how much more can be thrown at you! Gives you one hell of an excuse not to go out in public, even more germs out there ??
Hope the family is on the mend. Let me know how you get on re surgery as we will be similar times, I am in on 28th
Tanz, good to hear you are cracking on with treatment and also re hair that’s good to know . I was expecting it to come out so have had a pixie crop ready for chemo after Xmas and wish I had it done years ago, I love it. Like you am going to go for shaved look once I start
Sam x
Hi Pam/DMCF/Tanz
Just reaching out to fellow TNBC ladies. Get my results from bilateral mx on the 15th am so scared. They have taken some of my chest wall to test as the tumour was sat right at the very back of the breast against chest wall. Just need to try and get some positivity but struggling at the moment . Post op one week on is actually worse now than last week. Think I may have lymphedema .
Dmcf, have you got your surgery date yet?
Tanz and Pam, hope you ladies are doing ok
Strength and love xxx
Big cyber hugs coming your way… Have you got them? It seems to be the way, tests and awaiting results… Seems to be the hardest part of this journey.
Thanks ladies. Feel like I’m going to burst open with all the swelling !! Got my cyber hugs thanks you xxxx
Hey everyone! I’ve only just got the notifications from this post…how annoying. I’m
2 days post op right now. Wle but they found the bloody stuff in at least one of my nodes so my sentinel biopsy turned into an auxiliary clearance & I find out the full results on the 23rd. How are you feeling now Brewster x x
Dmcf, that’s not good news about your nodes , big hugs. At least it’s all OUT now.
Did you have bilateral or one side ?
Like you am just keen to get on with things now. I know that I will be starting chemo but no date yet. Results from surgery were Triple negative, grade 3, 18 mms, Ki67 was 58%!!! It was sat right at the back less than 1mm from chest wall, which is a worry but nodes were clear.
Sending you lots of positive vibes . This post op recovery is a bit worse than I imagined to be honest , but just trying to get on with it xxxx
Hi Pam
I have had surgery first, although this was a change of plan. When they do your surgery I assume they will do mastectomy and lymph node clearance but check with your team
It’s so hard not to worry, I know. My tumour was less than 1mm away from the chest wall and the Ki67 indicators were very very high, so although my nodes are clear I am also left with some big risks.
All we can do is to focus on getting on with things and hope to beat this thing. Many of the ladies on here have been in worse positions and have done ok, all we can do is focus on that
Sending you lots of hugs and try to stay strong xxxxx
Hi Pam
I think you CAN ask for full mastectomy if that’s whatbyou feel happier with,myou should ask. Although it’s pretty. If surgery, which I am hating the recovery .my previous two caesarains were a walk in the park compared to this.
Ki67 is a rumour marker which can be useful in telling them how aggressive the BC is. They will usually test the tissue once it’s removed
Sam x
Hi Pam in answer to your question I ended up with a full auxiliary node clearance. All I know at the moment is there was at least 1 positive node and estimated tumour size 20mm. I had a wle (lumpectomy) as I have young kids healing process is quicker. Having reviewed all the options with my surgeon I could have had mx but new evidence shows you are no more or less likely to have a reccurance from lumpectomy or mastectomy. My lump was in the upper left quadrant of my left breast so perfect location for wle & I should end up with a great cosmetic result. Not that that was any way influential in my decision. My recovery so far has been great. I’m uncomfortable but by no means in any pain. I have a drain in till Friday which is causing me more hassle than anything right now. I was told chemo is the first port of call for tumours over 30mm which is why I’ve had surgery first with chemo to start in the new year x x
Get yourself some open fronted Jammies. Ear plugs (if you have to stay in) lol. & yes a full auxiliary clearance is all the nodes removed x x
I should have been a day case but ended up being kept in over night. The pain is completely bareable. Just got to keep on top of it & remember to do your exercises x x
Hi Emma and welcome to the forums
I am sure you will find he support you are looking for here, in addition, our helpliners are on hand with further practical and emotional support for you so please feel free to call. Lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000
You may find the younger women’s area of the site helpful too, there is lots of information and support ideas including our ‘Younger women together’ events where you can meet up with others and share support , I hope you find this helpful:
breastcancercare.org.uk/younger-women
Take care
Lucy BCC
Hi Emma
Sorry that you find yourself here but hope you get support from this forum. There are a bunch of lovely ladies on here and I have found it incredibly supportive and also a good source of information.
I am triple negative, 18mm , had bilateral,mastectomies and now just waiting for chemo start date.
I have two boys 17 and 12 .
Sam xx
Emma.
Also forgot to say that on the chemo monthly threads we have started a Post Xmas chemo one for all the ladies starting chemo in January so you will get to know a few of us on there too
Sam x
Thanks very much Sam, will join the chemo forum for Jan. Everyone does seem very lovely. I hope you are recovering well from your op.