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results from MX/SNB panicking need ANC

21 REPLIES 21
swampy1901
Member

Re: results from MX/SNB panicking need ANC

Just wanted to wish you well tomorrow - our NHS is the best xxx hugs xx
swampy1901
Member

Re: results from MX/SNB panicking need ANC

It depends how brave you are feeling -in my case it just so happened that when the consultant was giving the news there was a different BCN and we raised the issue with her. Perhaps if she is there next time you could say something along the lines of ........ with the best will in the world I don't feel supported, give examples of her evasive behaviour and how she makes you feel when you ask questions that she avoids answering and then turn to the consultant and ask if a change can be made. Nothing personal in it you just don't feel supported and you would like to try someone else. It shouldn't be an issue.

Powdow
Member

Re: results from MX/SNB panicking need ANC

Swampy, I know, someone else said to ask for her to be changed. I get on ok with her but I don't think she is very keen on being asked questions, like yours - evasive - but also like she's giving me a row for asking and being worried, and Im pretty sure I'm not a major worrier. Trouble is, how do I ask to change her, she is always there when I see my surgeon, and she is my point of contact.
I'll see what happens after op as I'll be in the care of the breast nurses at the plastic surgery unit, then depending on what happens next im not sure how much contact I'll have. I may bring ur up with my surgeon if I get a chance though.
In hospital just now, settling in for op tomorrow.
swampy1901
Member

Re: results from MX/SNB panicking need ANC

As for your BCN ask to change her - we don't always get on with people because of personality differences. Neither my daughter or I were taken with my first BCN. She was way too evasive when we asked questions. When we mentioned it - no questions were asked and we've never seen or spoken to the original BCN since.
swampy1901
Member

Re: results from MX/SNB panicking need ANC

Powdow

From what I remember it is possible to have radiotherapy with a DIEP - not ideal but better than with implants! The ANC would be an operation through the ampit but whereas 5 years ago they would cut out a chunk of muscle which nodes would or not be within - now they are more discerning and just remove the nodes - a little more intricate but one of the many improvements which is always being made in medicine.

The SNB is considered the first point at which cancerous cells could be found in the nodes. - so if they are clear you avoid the need for ANC. With hindsight perhaps I should have said to do the ANC if the SNB was positive but as it was in only one node............... the possibilities are endless.

But I'm not looking forward another operation as I dont do well on anaethetics and have a tendency to favour technicolour yawns after my operations but that would be preferable to chemo! Cat Sad

 

 

Powdow
Member

Re: results from MX/SNB panicking need ANC

Swampy, sounds like you have a good BCN there, I've only been told it's lobular, one bit 11mm one bit 4mm, ER + HER-. In one node taken out but didn't say how much was in it. When I questioned the clearance and also what about radiotherapy instead surgeon said I couldn't have radiotherapy after recon (which I was confused as thought it was only if having implants but I am having DIEP) and that also once the recon was done she wouldn't be able to go back in and take out the nodes. It all was a bit confusing and perhaps I should have questioned it to get it clear in my mind, but I also feel I trust her, and can't see why they wouldn't be doing the best for me and my particular situation. Reading your post however, you sound in a very similar situation and yet have been offered choices.
I am thinking back to various conversations with surgeon and although I'm sure she said she couldn't go back in after recon, the reason I got the snlb before mx was that she said snlb is not so invasive and she preferred to do that first then if I did need a clearance could do it at same time as mx, whereby if she did the slnb at time if mx and it was positive I'd be going back in for another big operation. So that contradicts what she said. Oh it's a bit confusing but my BCN is not very understanding when you call so I've given up!
swampy1901
Member

Re: results from MX/SNB panicking need ANC

Hi Powdow

I know exactly where you are coming from - every appointment seems to paint a slightly blacker more alternative picture to what you already know. So much so that my BCN went through pathology reports with me before my mx/immediate recon. I now need to do the same for the later results so that I get my head round around the latest news.

 

It's rubbish when it seems like more bad news on top of what we have already dealt with isn't it?

I went for my results on Friday and of the two SNBs one was full of cancer and the other was clear - all the test results so far show that Chemo is fairly unlikely. Hormone receptive, HER2 Negative, etc etc some other test K summat? is low - all positive factors!! But I have an appointment to see the oncologist as my consultant thinks I need to discuss statistics etc.

If I have ANC and  they are clear then won't need Chemo but will have had technically an unneccessary operation to clear nodes but it's the only way to be sure it's not spread further. Still need radiotherapy for one area where margins are too close and could have radiotherapy to the nodes too to avoid operation. Then I could have chemo to treat everywhere and not have Radiotherapy etc etc  Decisions! Decisions!

 

 

Powdow
Member

Re: results from MX/SNB panicking need ANC

Good to find this post.
I'm in a similar situation where all along (Dx early May) they have been confident that there was no node involvement. I had SLNB end July, surgeon just took one node and it was positive. I'm getting mx and recon on Wed and they will do full clearance then as well. Surgeon says she doesn't expect anymore to have cancer in them, but I'm not as confident. Feel like every appointment so far has all been bad news, it's just been constantly added to, so confidence has left me 😞
Just looking forward to waking up after op on Wednesday as that is kinda freaking me that I'll bit wake up!
Rachele12, good luck with your IVF. I also went through IVF, not cancer related, just unable to get pregnant, unfortunately although my 3rd go was successful, it ended in a miscarriage, but we went onto adopt a gorgeous little boy, who is now 9!!
Annietre
Member

Re: results from MX/SNB panicking need ANC

Thank you  Moijan, it's hearing positive stories like yours that help focus the mind on the future. I had my CT and bone scan results today - all clear feel like I'm dancing on air but I know the war is not yet won - chemo starts in 2 weeks . Hope I am around in 15 years to tell my tale to help someone else through the darkness x

 

 

rachele12
Member

Re: results from MX/SNB panicking need ANC

What a lovely post moijan had a sleepless night and bad morning and just what I needed to hear xx
Moijan
Member

Re: results from MX/SNB panicking need ANC

Hi ladies,

 

i was thinking back to when I was diagnosed with b.c. In 2001........ They took 13 lymph nodes out...12 were cancerous and the cancer had grown outside the nodes into the fatty underarm tissue. I also had less than 1mm clearance. I remember being told I had a 1 out of 4 chance of the cancer NOT returning within 2 years.!

 

needless to say, that freaked me out and I began searching to find people who had had so many involved lymph nodes and were still with us......surprisingly, I found quite a few ladies who were in that position!

 

i myself retired at 52, thinking I'd be gone in 6 months! I had opted for extra (post op) taxotere and opted for underarm radiotherapy. i ended up with lymphoedema in that arm after an infection. However, today, 15 years + later, here I am....still going. I was pleasantly surpised that I coped with discovering I had secondaries 12 + years later!      

 

The message I am trying to leave you with, is that there are lots of us who are still around many years later.

you just need to get through your current treatment and then travel hope-fully!

 

best of luck to all of youxxxxMoijanx

rachele12
Member

Re: results from MX/SNB panicking need ANC

He said he could get me in next week to take more lymph nodes and like you the though of more surgery so I burst into tears and he said he would wait until after my chemo and that should be fine to do it that way. I feel like surgery was traumatic for me and the general anthesetic had a real effect feel like I'm just starting to feel half normal now after 3 weeks I'm such a wuss ha. But I have a holiday 2 weeks on Sunday with my family and I have just started the IVF process to collect eggs before then then when I get back its chemo time xxx
Wendloui
Member

Re: results from MX/SNB panicking need ANC

Hi Annietre

I'm in the same place as you right now, had WLEand SNB on the 14th june, 2 nodes removed, both positive, going in on tuesday for ANC as well as a shave, didn't get clear margins, as if the treatment isn't daunting enough i'm ER PR HER2 positive so already facing chemo, herceptin, radiotherapy and tamoxifen, was dealing with this so well upto being told i needed more surgery, another setback and another lot of waiting 😔
Annietre
Member

Re: results from MX/SNB panicking need ANC

Sounds like you had unwelcome surprises to Rachele , think it's the thought of more surgery that got me down rather than anything else... Def wish I had a fully node clearance the same time so didn't have to do surgery again. Are you having another operation soon ? All the best x

rachele12
Member

Re: results from MX/SNB panicking need ANC

Hiya sorry to hear this I remember you messaged me we had our mx on same day I had one node that was positive but they still want to take more wish they had just took more on the day. I was shocked as they found 3 tumours but were quite small. I hope your further tests come back clear and wish you all the best. At least we are all in the best hands and treatment these days is the best it has ever been. Xx
Annietre
Member

Re: results from MX/SNB panicking need ANC

Thanks everyone , just had a call from my breast care nurse the multidiscipline team met yesterday and discussed my case , oncologist wants to get on with chemo and heceptin before any more surgery , not sure if this is a good or bad thing ? Everything is still pending scan results, not sure I asked any apprpriate questions so that I could understand why this course of action , must write a list for when I see the oncologist.  Hope all of you are doing well , I definitely hate waiting for results and being in limbo . After surgery being in control of my own recovery to a small extent . SCarletBea I hope you are home soon. X

ScarletBea
Member

Re: results from MX/SNB panicking need ANC

Hi Ani - just wanted to let you know I'm lying in my hospital bed after having had ANC, following the results of my mastectomy and SNB that I had 3 weeks ago.
I also freaked out a bit when I found out the need for another surgery, but all's ok.
After all, they just want to treat us well, minimise bad stuff hapenning.

Good luck!
Vintage
Member

Re: results from MX/SNB panicking need ANC

Just wanted to say Jen Jen.
Your advice is what I keep trying to tell myself. You are right. Hopefully it will get through to my brain and stick soon.
X
Vintage
Member

Re: results from MX/SNB panicking need ANC

Hi Annietre
I also got most of my results yesterday after a MX and SNB 2 weeks ago.
I am back in that feeling I had at first diagnosis today, panic. It's like starting again to try and get your head round the new unwanted news.
My husband says why am I in such a state because it's been taken away, but I think it's a process of that roller costed we are all on.
I had had many biopsies mamogram 2 ultrasounds and MRI before surgery so was not expecting much to change from what I already knew.
They have found a new third larger tumor that never shown on any scans and grade has now moved up to a grade 3 like yourself. And the margin on that tumor is only 0.1mm. But my surgen is not wanting to go back in for larger margin. So I have to accept he is right.
I already new I was her2 positive and er positive. So my treatment plan is not changing , still chemo herceptin and hormone treatment but perhaps now radiotherapy as well.
I am also waiting on a date for a CT scan as I have been having pains in my ribs on the MX side. So I totaly understand more waiting and stress for these results to come back. It really is the pits waiting on results. I already had a bone scan and it was clear. Yey.
Also waiting on oncologist meeting . I think it will be a few weeks time.

Keep in touch, We will come out the other side of this.
Loads of hugs x

JenJen
Member

Re: results from MX/SNB panicking need ANC

Hello

I thought id share my story which may help you feel a bit better.

I was diagnised with grade 3 stage 3 IDC in October 2015 my lump which was 7.5-8cm in size plus another small one in my lymph nodes were Her2+ and ER/PR- like yours. I had neoadjuvant chemotherapy so only had my MX & full ANC 8 weeks ago. In October I was where you are now and waiting for CT results despite the massive size of my lump they were clear and there is a very very big chance yours will be to. My lymphnodes were clear on removal so proof chemo does work and if there are any stray cells odds are it'll zap them. My oncologist used the words at my first chemo check up "plan to send you off into the sunset in a few months time cancer free" they werent overly worried about the lymph node involvment which helped me deal with it a lot better.

I cant tell you not to worry its a very scary time but I can advise that worrying doesnt change the outcome it just makes you miserable in whats already a stressy time if you find yourself worrying stop ,pull yourself into the here and now and if you want to think of the future think of that holiday you are going on when this is all over. You will feel calmer and better when you get a treatment plan in place and things get moving. Believe it or not 10 months in and even though I am still waiting for radiotherapy I now have days where my first and last thoughts arent cancer it does get easier. You are stronger than you ever thought you were believe me x

Its OK to be scared its ok to feel what you feel but for the sake of you and your sanity you need to just stay calm and focus on doing whatever it takes to get over this b*gger of a disease

Take care and big hugs
Jen x
blueash
Community Champion

Re: results from MX/SNB panicking need ANC

Hello,

 

I have the same as you HER2 positive and hormone negative. I am awaiting my path report - I had a lumpectomy and Sentiel node biopsy last week.

 

It is a club none of us wanted to join, a journey none of us wanted to make and yet here we are. Nothing I can put into words can change it but please know that you are not alone. I have phases when I come on here for support and then I want to stay away because I am so fed up with it all. I recognise that and I know that my emotions are all over the place and yours must be too. It is perfectly normal to be upset, unhappy and afraid and I think it helps to acknowledge that. Some people are the opposite and want to deny it, shut it away and if that works for them then great. It does not work for me and I have to say (well write) how I am feeling. I hope I have been of some comfort to you xxx

Annietre
Member

results from MX/SNB panicking need ANC

Went for results today after Mx .Moved from grade 2 to grade 3 multi focal invasive ductal,  hormone neg , HER +,  4 nodes taken in SNB all positive . I was in a positive place all the way from Dx to surgery and recovery but I have no idea where my head is now, I haven't been able to stop crying, everyone kept saying no node involvement was good when it looked like mine were clear - how bad is this ? The thought of further surgery is overwhelming , I knew I was likely to have chemo and had made my peace with that, this just feels like a bolt from the blue, and I'm convinced it's a death sentence. Have bone scan and CT next week then three weeks to ANC , assume results will be 2 weeks after that, I think I have just hit panic mode , which is just not me I am everyone's port in a storm . Sorry for the overflow of self pity x