Lumph node+ & vascular invasion = chemo?

I would be grateful to hear from others in a similar situation as I think that I may be faced with making a decision about chemo.

 

My story in brief: 11mm IDC with Intermediate DCIS within measurement. Had WLE & SNB, clear margins but 1 node positive. So had ANC with remaining nodes clear.

 

Here’s my concern, I learnt last week from BCN that in addition to small area of focal vascular invasion there was extra capsular spread in the nodes and the node that was affected had 6mm of cancer in it. Presume that makes it macro? I’m ER+ (8) & HER2 neg which I know is good.

 

I keep learning more about my pathology report in dribs and drabs even though I’ve said from the very start that I prefer to know as much detail as possible. I’ve asked for a copy of my path report but told I have to request this in writing from medical records. My BCN thinks it unlikely that I’ll have significant benefit from chemo (1% over 5, 2% over 10 years) but also that I’m in a grey area.

 

I’m meeting the oncologist next week so researching and gathering as much info as possible in preparation. I’ve used Predict but it doesn’t include vascular invasion or extra capsular spread. I felt better when I was told I would ‘probably’ have chemo as whilst it wasn’t something I was looking forward to (!) I felt it would be a belt and braces approach to prevent recurrence and spread, both of which I’m terrified of. I have been very positive throughout this and don’t want to lose the plot now. 

 

I’m 54 and in good health. I have had excellent treatment in a short time frame just feel overwhelmed by having to make big decisions (I chose WLE not MX). I would appreciate any thoughts from you lovely ladies.

 

 

 

Hi hopefullyholly,
I was 56 mm ILC grade 2 and er+8 and HER2 neg. i was told post surgery that chemo might be an option like you but mine was because the tumour was larger than expected. So they wanted a belt and braces approach. Left the decision to me. The hospital said for my case it would improve survival odds for 10 years by 3% and Adjuvuct Online which they use too said 7%. I was told that Adjuvuct Online tend to be more pessimiatic when detetmining odds as their are several factors that they dont account for. My tumour was 15mm solid at centre but them brached out spider like with tentacles. But the online prediction tools calculate it as a solid whole mass.

I thought for a long while and decided not to go through with chemo I’d been through enough. I live alone too and this was. Nig factor in my decision. I have started on tamoxifen and rads. Next onc appointment in August will be to put me additionallly on monthly injections of Zoladex. They said that would negate the fact i didnt have chemo. I would rather have the monthly injections of Zoladex than chemo. Its such a personal choice but your hospital ahouls be able to give you stats about your 10 year survival with no furthet treatment or with hormone therapy or with rads and hormone. For me it was the tamoxifen that really made a difference to my odds. Hope this helps and good luck xxxx

Hi holly, did they give you grading on tumour? Mine was 21mm, er+ her 2 neg, no nodes…but a grade 3. Am doing chemo as onc suggested, and the grading on mine i think made a big difference. Belt and braces, but my attitude was to throw everything at this. Am in for horrible time, but Im wanting to try everything they suggest, i dont want this back! But, each to their own, i could have gone straight to rads, the difference for mewas much higher over 10 years. I did think though if only 1 or 2 % then it would have been harder. Good luck in whatever you pick

Hi hopefulholly,

 

I saw that you popped in on a reply to Jilly1998, so I thought I’d go to this posting to answer you.

 

Here’s my take on things:

 

Pathology Report

 

Under NHS guidelines you are entitled to a free copy of your report if you have attended hospital within the last 40 days. At my meeting with my breast surgeon after my first operation he went through the report with me. I asked politely to have a copy of the report to take home with me. He explained it was procedure to request a copy from Access Health records at the hospital. I did get the forms but when I read through the applicants guide it said that the report would be with me within 40 days.

 

It is at this point I made what I think is a big mistake.  I am writing this paragraph not so much for you because you have had ANC but anyone else who is reading this. All correspondence and the pathology report is sent to your GP. I didn’t know about the pathology report being sent to the GP but of course it makes sense. I should have gone to my GP and got her to go through the pathology report with me then before I had the ANC.

 

I was in the broom cupboard with the breast surgeon, breast care nurse, hospital registrar and my mother-in-law when he went through the pathology report. ANC was discussed or radiotherapy to the armpit but the radiotherapy not focused on; he focused on ANC. I regret making the decision there and then to go for ANC and feel I did not give myself time to reflect on what that meant and to research exactly the implications of this. Remember it was 1 out of 3 nodes that was positive and I  was not expecting this because the biopsy appeared fine. Research shows that 1 in 3 nodes has shown that it is likely (93%) that no other nodes with be affected.

 

Anyway, going back to the pathology report. I did not see the GP until after my ANC because it was only then that chemo was mentioned and it was then that I could really look at   the report for the first time in GP’s office. " The oncologist will discuss chemo with you as well as rads and tablets," was what I was told by my breast surgeon. This was despite all the other nodes being clear. I assumed ( one should never assume) that nodes clearance would mean no chemo.

 

So, after the GP I saw the oncologist the next day, or may a couple of days later. At the meeting with the oncologist we went through predict on line and various other things. I also asked her to go through the pathology report with me and said that I had not seen/ did not have  a copy of the report. ( The GP could not print it out for me when I saw her because the printer was not working.) I told the oncologist that I had been told by my breast surgeon that I had  to fill in a form to request the report. Smiling sweetly, I asked if she could print me a copy. As there was no printer in the room she said she would give me the copy from the file and print out another copy for the file. " That’s very kind of you," I replied.

 

I had 2 cancerous sections in my right breast. One 7mm (grade 3) by my right nipple and the other 2mm(grade 2) further back in the breast. There were cancerous “legs” going into the right nipple, which meant the nipple had to go along with the aerola. The night before the operation I said, “Farewell, dear friend, you’ve given me lots of fun but now it’s time to say adieu.”

 

I don’t know which day you are meeting your onocolgist but I am sure you are doing plenty of research. I had no vascular invasion in the blood, or lymph fluid. The sentinel node did not have “legs”, which I think is what capsular spread means. 

 

I am, as I have said in the other post, having chemo. I didn’t want to but my husband begged me, given that the 7mm cancer was grade 3. 

 

At the end of the day, The Medical Team can only advise you and ultimately you make the decision. It’s a lonely place to be.

 

I asked my oncologist why they strongly recommended chemo. More to the point I asked if it would have made any difference if it was 4, 8, 12 etc nodes. In the end, I got the oncologist to admit that because it was in one node I ticked the chemo box, along with the fact that the 7mm bit was grade 3. To which I said, " I understand that but I am a person not a statistic and a box to tick." It was a very friendly conversation and I ended it by saying that I would think about it, discuss it with my family and then get back to her.

 

I’ve waffled on here, so if you would like I can send you a private message with my thoughts on chemo and anything else that comes to mind concerning making a decision.

 

I’ll p.m. either later today or sometime over the next couple of days, if you would like me to do so.

 

Make sure you go with lots of questions for the oncologist to answer. I began the meeting by shaking hands, sitting down and then getting out my notebook and saying, " I have one or two questions to ask."

I smiled all the time and my mother-in-law came with me and she asked questions and took notes. I’m used to being the one who asks the questions so it was easy for me and this time I was very focused. I could kick myself that I was in too much shock at the beginning to really focus at the time but such is life. xx

Thank you for the post Kilamanjaro. I find it quite shocking that you had to ask for your reports. Mine were all given to me at consultation with surgeons and oncs. The NHS operate a letter to patients initiative which i opted into when i registered at The Royal Marsden. All letters to GP etc i get posted out a copy. Do ask about this as i have found it very informative in making decisions. Hugs xxx

I was exactly like you Sheena. Mine was 5.6 cm. it was bigger than they thought it would be. I was not prepared for them to suggest chemo to me at results meeting as i too had been told next step radiotherapy. I was givena week or two to think about it and they done all my 10 year survival stats. Chemo only increased my odds by 3% so i didnt do it. Everyone is different but i was told if the tumour is over 5cm even if it only improves your odds by 1% they will suggest it. You may be fine but its worth preparing yourself as it came as a shock to me and i got quite upset. Cxx

I’ve written replies to DizzyDee, vic55 and Kilimanjaro but none of them posted. Just checking this one works.

Didnt get ur reply but got this one hopefulhollyxxx

I found that BCC booklet really helpful as sometimes at the hospital they talk to you like you are a fellow surgeon/onc so its good to be able to understand what they are saying!!! Xx

Hi, I’ve just found my responses from last week, even though they they weren’t posted, they were saved, duh! I shall re repost and give an update. Thanks everyone x

Hi all, thank you for your support and words of advice.

 

I’ve resisted logging onto the forum for a while because it was becoming addictive and I was on the verge of information overload! However the advice and research I’ve conducted elsewhere proved invaluable when I met my oncologist who began our consutation by ‘booking’ me in for radiotherapy based on the Predict toolkit and summary report from a bcn.  After a long discussion and use of Adjuvant Online, it was decided that I would actually benefit from chemo, which starts next week. 

 

Of course I’m apprehensive about the side effects of chemo but feel better that a decision, that is right for me personally, was actually made. For those who like to know as much as they can about their cancer and treatment options, I recommend thorough research and going to mtg with onc with a written list of questions. Mine wasn’t an easy decision to make but, as I’ve said, it was my own research and honest discussion with onc that helped me decide. 

 

Good luck and best wishes to you all x