TN with lymph node involvement and now poss liver and abnormal abdominal nodes

[EmmaW1979]

Hi Sam, will join 🙂 although I'm a newbie to FB (!) hope everyone doing ok xxx

[Brewster]

Emma/Dcmf/anyone

There is now a private FB page for dec/ January chemo starters . We are slowly growing and I realsied I am the only TNBC on there. Please come and join us . Only the ladies in The January Crew fb group can read posts and its specifically for all those about to come ce on chemo.

If you fancy joining us pm me your FB name and photo description so I know it's you and I can add you

Sam x

[EmmaW1979]

thanks June, much appreciated.

[June_BCC]

Hi Emmaw1979

Your Private Message facility is now working.

To use the PM system you can do it two ways, one by clicking on the messages tab at the top right of this page (near the sign out button) this takes you to your private message area and where you can search for the user you are looking for - using their user name. 

Alternatively, if you click on the icon of the user you want to send a private message to (within a thread)  this will take you into their profile and then there's a link from there for you to send a private message.

You can put your email address in a PM but not live on the forums, this is because anyone searching the web could get access to it.

Best wishes

June, moderator

[EmmaW1979]

Hi, sorry to hear you in discomfort, hopefully it will sort itself out quickly. Thanks re the info, because I've just signed up, I am not sure I'm allowed such privileges! I couldn't see anywhere to switch PM on. Would be interested to read. Am I allowed to give my email address on here or is that not allowed? Thanks Emma x is anyone here have the genetics testing? X

[Whitfield]

Hello Sam - thanks for reply. I'll need to discuss with hospital when I get to the point of removal which will be around March next year. Still four more Chemos to do but as least I've done four so half way.

Pam x

[Whitfield]

Jinny - Thanks for reply. I'm with you on stress for lumps in other the lther Breast. I know I have a 7mm cyct in the other Breast being a B2 code but there are so many others and I'm like you anxious that I will miss something after they hospital remove the current Cancer and I finish treatment. Let me know what they do for yiur other Breast and good luck.

Pam x x

[Brewster]

Hi All

Pam, I had a double mastectomy because it has been caused through receiving chest radiotherapy for lymphoma whn I was younger, so very high risk of developing in. It's boobs, so it wasn't an option to just have one done
DMCF, I am also sloshing around with fluid, which they don't want to drain as I have healed so well. So I am also struggling with exercises and absolutley HATE the feeling in my chest. Feels like a vice and everything sloshes about when I mobe. Yuk . It actually makes me feel sick

Two weeks post op now and they assure me things will improve but that it does take some time

Lots of love to all

Sam

[jinny2611]

Hi whified i asked for double but they wouldnt do it. Im trip neg and had 2 tumours in left breast and 9 pos nodes i have a fibromenda in right breast which is causing me lot of anxiety so this will be sorted when i get bit stronger x

[Dmcf]

Hi Emma I've tried to pm you but you have your private messages turned off. Just trying to point you in the direction of something that may be of interest to you as a younger person x x

[Dmcf]

7 days post wle & anc. And I have a seroma which is accumulating in my boob! I sound like a sloshing hot water bottle lol. Pain meds have been increased so hopefully that starts to help. But I have to stop doing my exercises which is actually making me feel worse right now! But I have been reassured this will pass. How is everyone else getting on x x

[Whitfield]

Sam - did you have Cancer in both breasts? Just wondering why they have you the double mx? As you know Im so worried about having so many breast cysts in both breasts I'm pretty keen to ask for both to be removed but am unsure if you can elect yiur surgery?

Pam x

[Whitfield]

Emcf - many thanks for replies. Yes, I have read doing the exercises paramount. I will try my best and get some Jammies in the sales.

I'm dreading starting the Tax!

GCSF injection pains pain now kicking in but I suppose that means theyre working!

PAm x

[Whitfield]

Hi Emma - so sorry you find yiurself here but as others have said there is lot of support on this forum. I'm 55 yrs old with an initial lump of 31 mm so I'm having first then removal then rads. Unfortunately I do not have children but have good family support. My chemo is EC x 4 then Tax which I will start on 24th Dec as I have already done the EC x 4. I also have node involvement so the hospital have said to me that they will removal all nodes.

If you are to start chemo you will find the treads really useful but if you want to ask anything please do so. It's hard but doable.

Wishing you well.

Pam x

[EmmaW1979]

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.

[Brewster]

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

[Brewster]

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

[Lucy_BCC]

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:

https://www.breastcancercare.org.uk/younger-women

Take care
Lucy BCC

[EmmaW1979]

Hi there,

 I was diagnosed on 20th Nov, triple neg and had my WLE and SLNB on Wed 10th. My lump is 23mm, I will get my results on 29th Dec. I'm 35 and have 3 girls - 9, 7 and 2. I will start chemo some time in Jan (depending on whether more surgery is needed node or margins wise). I am not in too much pain at all which is great. Im trying to be positive most of the time but sometimes it just gets to me! Im sorry everyone has this to go through too.

[Dmcf]

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

[Whitfield]

Thanks everyone for explanations. I will need to,get the Jamie's but probaby after Christmas.

I'm told it will be a day case.

Is the pain bearable?

Wishing yiunare well.

Pam x

[Dmcf]

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

[Dmcf]

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

[Brewster]

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

[Whitfield]

What are Ki 67 indicators?

Mine is close to the chest wall as well but theyre saying lump removal. Can I elect for full removal. The hospital are not really saying much at all at this point which is worrying me. They just say concentrate on the xhemo first.

PApAm s

[Brewster]

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

[Whitfield]

Brewster - I'm having chemo first and am wondering if you had surgery first?

My tumour was 31mm grade 3 with node involvement so hositial have said rhey will take all modes out when the operate. Everyone seems to,have less of tumour size, grade or with no node imvolvement and I'm getting scared.

My hospital are not telling me much at the moment hence my question about auxiliary node removal. ,is the total removal?

PAm x

[Brewster]

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

[Whitfield]

Dcmf - good yiu have had the surgery. Can you explain if poss auxiliary clearance? Does this mean you have had all the modes removed?

How are you post surgery? Is there anything specific we need to,buy?

Pam x

[Dmcf]

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

[Brewster]

Thanks ladies. Feel like I'm going to burst open with all the swelling !! Got my cyber hugs thanks you xxxx

[tanz]

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.

[Whitfield]

Brewster -sending you love and positive vibes. Px

[Brewster]

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

[Whitfield]

Hi Tanzania and Dcmf, for some reason I'm not getting notification on posting to this TNBC page so I will need to take a look at that.

I'm also Grade 3 TNBC with node involvement. Move had four EC chemo cycles and now on to Taxol fro 24th Dec, then surgery then rads. I was diagnoised August 28th with chemo starting early Sept.

It is a rought ride but we can do this. like you guys I have had scans and have been in hositial with infections and to boot minor operation but I'm back on track.

I wishing you well with yiur treatments.

Pam x

[Brewster]

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

[tanz]

i hope you get your op date confirmed asap and then you can cross the days down in your diary knowing that you are a day closer to the end of this.

Cannot believe the further developments in your house!  Poor you guys .. Big cyber hugs x. As if you didn't already have enough to contend with.  You are sooooo overdue some good news and luck! 🍀

I had the cold cap for 2x EC but no it going to bother for my third.  Hair started to come out at about a week after #2 EC in significant tufts.  So it has delayed but only delayed the inevitable for me.  In reality was only ever going to just delay.  Hair too fine to really stick around or not be noticeable. 😁 Oddly enough though I am not upset about my hair loss, in fact rather fascinated in seeing how little or much comes out when brushing!?!? Will have to shave off but leaving until really no option.. At the moment when wearing a wooly hat it looks like I have a head full of hair as sticking out under hat.  So much so that I have only told close friends, so at the moment the whole BC thing is under wraps, literally! LOL 😁 

[Dmcf]

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

[tanz]

Dmcf, hello!

Goodness me you have a lot on your plate at the moment, what can the Drs suggest or is it a case of monitoring and adjusting your sons diet?  I understand your thoughts are about looking after your son, but don't forget about you!  If only for 2 minutes!  ( a difficult task when you are a Mummy I know) so I am sending over cyber hugs x

Are you booked in for surgery yet? I am looking at surgery but have 6 or 7 rounds of chemo first, having EC chemo (also TNBC).  Meeting with ONC gave me the all clear in so much that it hasn't spread further than u/arm lymph nodes so for the timebeing it is the best result I could have hoped for 😀 what a rollercoaster hey!

[Dmcf]

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

[tanz]

Dmcf - excellent news from your scans, must be such a relief and now at leat you can rest assured that they will monitor and keep a check on this for you.  Do I take it that you are surgery first (if you dont mind me asking)?  I am chemo first (on round 2) and then the plan was surgery and radiotherapy 

... I am currently at home awaiting the iminent onc meeting this afternoon to hear back the results from my latest CT and PET scans from earlier in the week.  In reality I have over the last few weeks tried to get my head around the 'worst case' scenario and implications for my family... but still scared stiff.  Dont think you can ever really fully prepare but for me, knowledge is power and then I can then take some control.  Still finding this all a bit odd... as if I didnt know I had breast cancer then I would be walking around totally clueless as to what is going on inside my body?

In reality though all of this is just one hurdle of what will probably be many and like you say, work to a plan, be it the current one or a new one - an excellent idealogy and one I subscribe to!

[Dmcf]

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

[Sam_BCC]

Hi Tanz

I'm sorry to read you're having such a tough time at the moment.  As brewster has mentioned, do give the BCC helpline a call on 0808 800 6000  Here you can talk through your worries and share your thoughts and concerns with somone who wll offer you a listening ear as well as emotional support and practical information. Lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.

Best wishes Sam, BCC Facilitator      

[Brewster]

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

[tanz]

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!