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24mm jumped to 42mm grade 2 to grade 3 clear nodes to positive nodes and more margin needed. GREAT!

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Kip Community Champion
Community Champion

Re: 24mm jumped to 42mm grade 2 to grade 3 clear nodes to positive nodes and more margin needed. GRE

At my diagnosis I was told Grade 1 22mm and nodes appear normal on ultrasound. After mri I was told there were some calcification so had mx.  Once it was out I was told Grade 2 55mm!!!! And 3 nodes infected!!! Like you I was devastated... When I asked my nurse how it had grown so much she checked my notes and explained that the tumour was still 22mm but I had a few speckled bits around so they took the measurements of it all... Wish they'd said that to begin with... I worried for weeks.  I would speak to your nurse a d ask her to explain. It all.  My nurse reassured me that whatever size, it was out and didn't matter as it was gone!! So that's what I try to focus on but it is a shock

Kip

Member

Re: 24mm jumped to 42mm grade 2 to grade 3 clear nodes to positive nodes and more margin needed. GRE

I really hope you don't think I'm nitpicking but a change from 24mm to 42mm is much nearer to a 50% increase than being double - I hope you might find this reassuring. I think it's a shame to give people an "estimate" after mammography, much better to wait and be more accurate after biopsies.

 

Unfortunately, treatment is rarely a straight line and sometimes you have to ride with the punches. Good luck.

Shi Community Champion
Community Champion

Re: 24mm jumped to 42mm grade 2 to grade 3 clear nodes to positive nodes and more margin needed. GRE

Liz1969 sending you 👭hug. When I was told it was bc, they measured 2cm and I was told grade 2 after biopsy, 6 weeks later operation and it had gone to 5cm and grade 3, it can happen. Again like you was initially told op and rads, well that went out the window with the grade3, so Chemo it was. If you can’t get in nhs earlier and can go private that’s a decision only you can make ❤️ Do what you need to do. I chose to think of the chemo like having extra doctor on inside giving any rogue 💩 a good 🥊🥊🥊🥊. Most importantly remember you are amazing and beautiful and we are all here while the kitchen sink gets thrown at everything 😘😘 be kind to yourself and this is your journey, you do what’s right for you every step of the way ❤️💕💕✨✨Shi xx

Member

Re: 24mm jumped to 42mm grade 2 to grade 3 clear nodes to positive nodes and more margin needed. GRE

Hi 

the core biopsy took a bigger tissue sample . Based on that had all nodes out but turned out they were OK . It was painful but manageable I have no issues now with arm . My cancer was half Grade 2 half Grade 3 so it had started growing fast but they reckoned had been there long time . If they are clearing margins most of cancer cells already gone so try not to worry 

Member

Re: 24mm jumped to 42mm grade 2 to grade 3 clear nodes to positive nodes and more margin needed. GRE

Hi

 

Whats a core biopsy compared to a needle biospy? 

 

So when they removed your nodes only one had cells less than 0.2mm in size?

 

Its confusing me. My ultrasound said my nodes looked normal except one which was "borderline" meaning slightly larger than 2cm ( I think thats the guide) so the needle biopsied it and it came back normal. 

So they removed just one node during my lumpectomy and thats come back positive! I was told by my nurse anything smaller than 0.2mm is negative so my positive means it must be bigger than 0.2mm in the node. 

 

I am dreading the removal. of all my nodes. I mean I was fine after the lumpectomy no pain no issues no pain killers but now I know she only removed one node, so its no surprise really.

 

She warned me she has to dig deep to get to them all and it WILL be painful and numb or nerve damage and I need to have a drain in my breast this time after she removed the margins.... (not sure why... maybe she meant from the node removals?) 

 

How are you doing now? 

Member

Re: 24mm jumped to 42mm grade 2 to grade 3 clear nodes to positive nodes and more margin needed. GRE

Hi

 

Its just everything every single aspect of the follow up was bad news. It doubled in size (never heard of that before a few mm's yes but not twice the size) It went from a grade 2 to 3 in how fast its growing. They need more margins.

The one node they removed was positive for cancer (After being told the needle biospy was normal) and told the ultrasound was normal for my lymph nodes.

 

I went in positive thinking it was "early detection" as they described it at 2.4mm and nothing in my node from the needle biopsy. I was 90% sure I was going to be told they got it out and my lymph nodes were Ok so no chemo and straight onto Radiation.

 

Now I have to start all over again only with much more sinister sizes and grades.

I was shocked when I was diagnosed but I came to accept it and was Okay. Now i feel I am right back to being freshly diagnosed again. 

 

I have an online friend who had BC and advised many women here on these forums and also in real life and she said shes spoke and communicated with hunderds of BC women and shed never heard of a tumour size going up to such a large degree from the images to pathology results so I am confused why. How can they measure it so "wrong" 

 

I rang the support line here and the nurse said "Oh my goodness! Did they give you an explaination? They owe you that as thats quite a leap" so I know its not normal to be told your tumour is twice as big as the scans lead us to believe. 

The nurse on the phone (from this charity) also advised I pushed for a faster operation as 4 weeks following that revelation is a long time and probably due to holidays. So I have, they will be asking other surgeons if they would operate on me any sooner and any cancellations will be mine. 

 

See I am worried its grown super fast in the 6 weeks since the ultra sound....so naturally I dont want to wait 4 weeks to have the margins taken and the lymph nodes removed.

 

Im alsoseeing a private doctor on Friday we will pay to get the operation done faster I cant wait 4 weeks following todays revelation. 

 

Thanks for your reply xx 

 

I hope you're doing well ? 

Member

Re: 24mm jumped to 42mm grade 2 to grade 3 clear nodes to positive nodes and more margin needed. GRE

 Hi liz1969 - I’m so sorry you’ve had a second shock so I’m sending you a big hug to start with. You have come to the right place to vent. You may well want to shout at me/my message - but before you read it, please know that my intention is to give you an alternative more positive way of looking at this (rather than a death sentence) and not in any way to upset you.

 

I’m not medical and these are just my thoughts. From reading your message I’m wondering if your lump maybe hasn’t doubled since you had your ultrasound/mammogram, but was already 42mm at that time? The reply you got did say that they couldn’t give you an accurate size until the pathologist had seen it. I don’t know how accurate ultrasounds/mammograms are, I wasn’t given a size until after surgery (or not one that I remember). I do think that if your team thought that your lump is growing very fast that they would have arranged further surgery faster. They will have been able to see from testing the lump what sort of beast they are dealing with.

 

I’m sure you will find the wait to get clear margins and have the nodes removed will seem a long time - so please stay on here and let everyone help you get through this.

Hugs, Evie xx

Member

Re: 24mm jumped to 42mm grade 2 to grade 3 clear nodes to positive nodes and more margin needed. GRE


@liz1969 wrote:

Sorry I am venting....

 

I am absolutely heart broken and angry..Im angry because I was told my lump was 24mm (approx) based on Ultrasound and mammograms. 

Had it removed and my follow up today and its jumped to 42mm!! Almost double! And the few people I have spoken to say thats unheard of and I should ask for an explanation. So I asked and was told

 

"ultrasound and mammogram give us a guide and we measure the mass seen on the screen but we did tell you then we wont know the exact size or grade until the pathologist had seen it" So...yes I expected some size increase but not twice as big?

 

Its gone up to grade 3 from grade 2 ( I expected that ) and they need me to go back under to get more margins to the side of my breast and under it (its not growing to the chest wall or muscle which is good news) and if more margins are needed I will need a mastectomy.

 

And if that wasn't bad enough ...the needle biopsy they did on one larger lymph node when I had the mammogram came back normal but the one removed in surgery is positive.

 

AND I have to wait FOUR WEEKS for the surgery to clear all my nodes and take more margin.. 

 

No postive "This is very treatable" talking this time around. Lots of sad worried faces as i sat there in shock for a second time (First time at the mammogram when I was told it was prob cancer) then I got myself together and felt at 24mm it was Okay....and after all my lymph node needle test came back normal so I had no reason to think that would change so drastically.. 

So ALL of that change in several weeks and they want me to wait 4 weeks before they get the margins out and pull all my nodes out?? The margin may have grown another 3mm in 4 weeks! 

I feel like I have a death sentence hanging over me. I didnt before. I was confident for some STUPID reason. 

 

I just wanted to say I had a needle biopsy which was clear then a core biopsy which came back with some cancer cells . I was also heartbroken . I had all my nodes removed then after surgery it turned out the cells were micromets in one node only and there was nothing else there - effectively the nodes were not an issue but I had weeks of worry . So thoughts with you x 

 

 


 

Member

24mm jumped to 42mm grade 2 to grade 3 clear nodes to positive nodes and more margin needed. GREAT!

Sorry I am venting....

 

I am absolutely heart broken and angry..Im angry because I was told my lump was 24mm (approx) based on Ultrasound and mammograms. 

Had it removed and my follow up today and its jumped to 42mm!! Almost double! And the few people I have spoken to say thats unheard of and I should ask for an explanation. So I asked and was told

 

"ultrasound and mammogram give us a guide and we measure the mass seen on the screen but we did tell you then we wont know the exact size or grade until the pathologist had seen it" So...yes I expected some size increase but not twice as big?

 

Its gone up to grade 3 from grade 2 ( I expected that ) and they need me to go back under to get more margins to the side of my breast and under it (its not growing to the chest wall or muscle which is good news) and if more margins are needed I will need a mastectomy.

 

And if that wasn't bad enough ...the needle biopsy they did on one larger lymph node when I had the mammogram came back normal but the one removed in surgery is positive.

 

AND I have to wait FOUR WEEKS for the surgery to clear all my nodes and take more margin.. 

 

No postive "This is very treatable" talking this time around. Lots of sad worried faces as i sat there in shock for a second time (First time at the mammogram when I was told it was prob cancer) then I got myself together and felt at 24mm it was Okay....and after all my lymph node needle test came back normal so I had no reason to think that would change so drastically.. 

So ALL of that change in several weeks and they want me to wait 4 weeks before they get the margins out and pull all my nodes out?? The margin may have grown another 3mm in 4 weeks! 

I feel like I have a death sentence hanging over me. I didnt before. I was confident for some STUPID reason.