Hi Marywj,

I must state first and foremost that I am not a doctor. As far as I know from my own experience of having a lumpectomy 12 years ago, followed by a double mastectomy the following year. First time I had 6 modes removed, which were fortunately all clear. Second time, my surgeon only wanted to take a maximum of 3, but didn’t get any, as he only managed to remove a lump of fat.

I understand that there are 20-30 lymph nodes in the axillae. People with enlarged lymph nodes may be considered for a sentinel lymph node biopsy The sentinel node is the first lymph node into which the tumour drains. As far as I know, if this is clear there is no need to take any more nodes away. If any cancer is found in this node, then further nodes may need to be removed and this is when an axillary lymph node dissection is carried out.

My surgeon explained to me that there are 3 levels of lymph node removal, but the more lymph nodes they remove, the more likely we are to develop side-effects. I already had lymphoedema in the first arm, where I had a level one removal and, this is why he didn’t want to remove any unnecessarily from the other axilla. The tracer injection is usually the blue dye. As far as I know, this covers the whole breast, so there shouldn't be any need for more than 1 injection.

Do you know when you are due to get your results back? Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine,

thanks for the reply.  Yes, I suppose they want to take as few as possible to prevent lymphodoema as you say (sorry to hear you had this).  I knew about the sentinel nodes being the first that the breast drains into, then there are more axillary nodes.  My understanding was that they take all the sentinel nodes.  Maybe I just had 1, not sure but I thought there were 3!

My surgeon (whilst amazing) isn't very forthcoming with information and I get the impression doesn't like to be questioned too much!  That leaves me with so many queries which I then have to take to my nurse!

I had the radioactive tracer injection before the op.  I think the blue dye is used during the operation if they can't get all the nodes with the radioactivity.  She definitely didn't use the blue dye.

im almost a week post mastectomy surgery and it seems to have gone well, very little pain.  I'm pretty obsessed that something will have been missed and that she didn't get everything  out!  I'm told they won't know full treatment plan until results next Wednesday, the 6th so that seems to be the last big hurdle.  I'm very worried.

Thank you again  M x

Hi Mary

I only had one node removed and my understanding is that the number of sentinel nodes vary between people. I had the dye and radioactive tracer with my lumpectomy as that was standatd practice  in my trust.

 I was told that a Sentinel Node Biopsy is recommended to be done even if lymph nodes look normal on ultrasound ( which mine did) to double check no sign of spread to lymph nodes so was happy to have it. My pathology report confirmed no sign in lymph nodes and clear margins on my 8mm IDC so good surgical result - also no evidence of lymphovascular spread in breast tissue. Also good

I did get a copy of my pathology report as like to double check these things so you might want to ask for yours. I've finished my treatment after 5 sessions of RT and on  anastrozole for 5 years

I am having a private consultation with a consultant oncologist to better understand my prognosis/ recurrance risk as my treatment was so quick I was never given the chance to ask for the level of detail I like. Having copies of reports/ MDT notes and clinic letters was needed for that. I was told I am low risk with a good prognosis but want a conversation to have some closure 

Hope that helps x

It does help Jolamine, thanks.  My nodes were clear on ultrasound.  I'm like you in that I like to see everything and ask questions, second opinions etc.  My feeling is that whilst we have to trust in the process, I feel the need to take some control back, read up and ask.  I will be asking for a copy of my pathology report as well.

I hope everything goes well in the future for you, I'm sure it will.   You're an inspiration and reading your experiences has been very helpful and reassuring for me.  Thank you so much. M x

Hi Dorestgirl,

Thanks for your reply.  I think my last message should have gone to Jolamine, sorry to both of you.

That's interesting that you only had one sentinel node removed too.  I've been worried about this in case there is anything in the ones she left in!!!!  My ultrasound was clear too but I doubt microscopic changes would show up on an ultrasound so I wanted all the sentinel nodes out!!!  Maybe I had only 1, just don't know.  
 

I get all my results next Wednesday so all I can do is hope for the best.  
 

Really pleased for you that your post op pathology was all good, that's brilliant news.  Wishing you all the best in your continued recovery.  Mary 

Hi Mary, 

It's great to hear that your nodes were clear on ultrasound. This is probably why they only took your sentinel node, just to make sure. You always need to ask questions, as this is the only way that you will get any control back. I always draw up a list of any questions I have before I see my consultant. This ensures that I don't forget anything important. You might find it helpful to do this too?

I am glad that you are doing well post mastectomy and that you have had very little pain. Try to put your faith in your care team. It is only natural to feel that something might have been missed. This is why your tissue went to pathology after it was removed. If there is anything untoward left, you will hear about it on Wednesday, but I sincerely hope that you get the all clear.

I shall be keeping my fingers crossed for you on Wednesday!

Kind regards,

Jolamine xx

Thanks Jolamine.  I get the distinct impression that these surgeons don't like too many questions!!  I'm keeping everything crossed for next Wednesday - RESULTS DAY!

Had to go back into clinic yesterday to have a seroma drained.  It was the wierdest thing - I could actually hear fluid 'sloshing' around in my boob and it felt sore.  The nurse drained off 2 big syringes of stuff which was pretty gross!  It's much more comfortable now.   Just hope it doesn't fill up again.  Despite everything I'm still glad I didn't have any drains after surgery and I dont think it would have made much difference.  
 

Dressing off now and she's certainly done a tidy job on me, I'm happy with it.  Still swollen so looks like a small boob still which I didn't expect.  All in all I'm very happy with the result and still feel at the moment that I won't go down the reconstruction route.  Can't face more surgery.

Hope you and everyone are doing well.  As ever, thanks for your great advice.  M x

Hi Mary,

 I'm sorry to hear about the seroma, but am glad to hear that you feel more comfortable now. I had several of these drained and the instant relief was amazing. I couldn't have reconstruction, due to other complications, but I manage well with an assortment of prostheses for different activities.

I'm delighted to hear that you are happy with the result of your surgery. Mine was a mess after my lumpectomy, which made it difficult for the second surgeon to get a decent shape second time around.

I haven't met a surgeon yet who likes to be questioned, but if they are not explaining things to us, we just have to ask. It is your body and you need to be fully aware of what is happening to it and why.

Look forward to hearing how you get on on Wednesday.

Kind regards,

Jolamine xx

Hi Dorestgirl,

Your recent response has stuck in my mind about getting a second opinion about prognosis.

I had all my post surgery results yesterday and thankfully they were all good.  No node or lymph/vascular spread, node clear (still concerned she only took one sentinel node out), DCIS and my grade 1 invasive out.  Oestrogen + and HER2 - so no chemo needed apparently.
 

Fundamentally my surgeon has told me I'm sorted and they have sent me on my merry way with Tamoxifen.  I never saw an oncologist or had any scans, although I did get my mammograms re-read for a second opinion as they missed an area of calcifications initially.  I was on a high yesterday but now I've come through it all I'm left feeling a bit traumatised by the whole thing.  Is this really the end of my tussle with BC??!

I struggled to get some answers from my team about questions I had.  I got the impression they occasionally thought I was being neurotic, but in general they were very good.  I, like you feel I just need to get a second opinion on everything as I've had so little treatment really.  Don't get me wrong, I was terrified at the prospect of chemotherapy but I was prepared to throw everything at this if needed to make sure it never came back!

How did you get on with your second opinion with the oncologist and was it easy to get copies of all your results etc.

Thanks.  Mary x

Hi Mary

I can totally relate to how you feel as that was/ is me ! My appointment is actually this afternoon so I will let you know how it goes and whether it was helpful.

In terms of getting relevant docs I needed clinic letters, most recent scan and pathology report to send through. I already had copies of the clinic letters and had asked for the pathology report when I saw the surgeon for the results appointment so had that too. The rest I had printed off by the nurse I saw after my final RT session- we went through my record and I got copies of the diagnostic Ultrasound ( as that was my last scan) plus I asked for the MDT notes so got those too. I then scanned them and sent them off to the consultant I am seeing today via Zoom. His private secretary told me that he should also be able to access anything else he needs ahead of the appointment. 

So straightforward really and I was a bit opportunistic in my post RT appointment to get some more stuff! 

Ironically I have just had my end of treatment summary come in the post today a month after the actual T/ C ! 

Hope that helps 

X