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Lumph node+ & vascular invasion = chemo?

24 REPLIES 24
kilimanjaro
Member

Re: Lumph node+ & vascular invasion = chemo?

Hello hopefulholly

 

As you say, you have made the decision that is right for you and that is all that matters.

 

Assuming that all is well with my blood results it will be a case of "Thunderbirds Are Go" for my 3rd session of chemo  next Thursday. x

 

 

hopefulholly
Member

Re: Lumph node+ & vascular invasion = chemo?

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

 

 

Tess1950
Member

Re: Lumph node+ & vascular invasion = chemo?

Hi, hope you don't mind me joining in.  I had two types of cancer plus HER2 Positive and had a mastectomy. Apparently with the types of cancer I have it is rare to be HER2 Positive. All I could think of to say was I like to be different. When I saw the surgeon I asked for a copy of my report which she gave me. When I was referred to the oncology consultant I had done some research which really helped in knowing what to ask.  I start chemo on monday so my head is all over the place and I am walking around as though I have no brain.  The actual chemo is not the problem.  It is not knowing how I am going to feel.  I was told I was having chemo then injections then tablets.  I hope you get a copy of your report as it should help you understand and then you will know what questions to ask.  This forum keeps me from completely going round the bend.  I have to smile at the minute as I am typing and my cat Simba is thinking about leaping on my hands.  He is very mischievous Cat Wink

Let me know how you get on.

Thinking of you.

Love Tess

xxxx

Gaynor1
Member

Re: Lumph node+ & vascular invasion = chemo?

Hi Vic 55, my results from surgery on 21st may are the same as yours but they have sent mine off for a Oncotype Dx test as they said I was borderline for chemo. However I did have a reduction on my good breast ( while I say good breast but they also found some intermediate Dcis ) to match the other. Did you have an Oncotype Dx test or were you recommended to go straight for chemo? I'm still waiting for my results but hopefully back next week . Do you mind me asking why they recommended chemo for you? Just want to get an idea of what they consider etc ( or probably trying to work out what there going to tell me more like !!!!) I hate all this not being in control.
kilimanjaro
Member

Re: Lumph node+ & vascular invasion = chemo?

Hi hopefulholly

 

You're certainly right about a sense of humour being invaluable at a time like this.

 

At my first meeting with my breast surgeon I remember him examining my right breast and trying to locate the moveable lump. At first he couldn't find it and he touched my nipple. Before I could stop myself, I said," No man, that's my nipple. I know what my nipple is." My friend, who was behind the curtain, started laughing.

 

On my second visit when I was told I had breast cancer, my surgeon explained the forthcoming operation and told me about the blue dye. Imagining that my right breast would turn completely blue, or resemble one of those marbled cakes ( whatever those cakes are called), I looked at him and laughed. "Are you serious?" was all I could say.

 

During that visit we also discussed reconstruction. I just looked at him, in disbelief, when he explained that sometimes tissue from your bottom was used to pad out the breast. "So, I could have part of my bottom in my bra?" was my answer to that one.

 

On the day of the actual surgery, after a hi-tech radioactive dye being injected into me, a guide wire sticking out of my breast to guide him to the bit further back in the breast, he then took out an ordinary black felt tip pen and put a cross on my right breast. " It's old fashioned, I know, but we want to make sure we operate on the correct side." " Quite so, " I replied.

 

Finally, as I was wheeled towards the operating theatre, at what seemed like 50mph, it was on the tip of my tongue to say, "I guess this is rather like being in a sedan chair." I decided against sharing my thoughts with the nurses, who were wheeling the bed, because it didn't seem to be the "normal" thing to say.

 

Looking back at it all, I've decided that there's no such thing as "normal" in the breast cancer world.

 

I'll pm you in the next few days. Take care. x

 

 

hopefulholly
Member

Re: Lumph node+ & vascular invasion = chemo?

Hi Kilimanjaro - I'm sorry I haven't replied earlier but I had a bit of a meltdown last night, had a few tears and felt quite sorry for myself so decided to stay off this site and give my brain a rest! 

 

I asked my GP for a copy of the pathology report but was told he'd only received a praises so not much help. I'll ask the oncologist next week (Tuesday).

 

It's interesting that your surgeon discussed radiotherapy, even if he did skip over it (broom cupboard made me laugh!), my surgeon just said you need to come back in for an ANC in 3 days. I was in shock to be honest and didn't question it. I felt like I was caught up in a series of treatments with no time to think.

 

And this is how it's been since my diagnosis following a routine mammogram (a year later than it should have been but that's another story).  Recalled on 7 April - mammogram, ultrasound & biopsy, results on 14 April with choice of MX or WLE; surgery on 22 April but postponed until 29 April as I had a chest infection, results 12 May,  ANC on 15 May then results of that 11 days later. I appreciate that compared to others, my surgeries and results have been super quick and for that I am extremely grateful. However, it's now 3 wks since the ANC and I'm concerned about long term problems. I know it's early days but I'm still quite swollen on side of my  breast (I am very big busted!), and under my arm. I'm managing to keep up with the exercises but keep getting a frozen shoulder. I have arthritis in my neck which causes pain across my shoulders, esp the side that has been operated on. I did mention this to the medical team but they didn't see it as a problem. At the end of the day, I would probably have opted for the ANC because I'm a worrier, I just wish I had been better informed.

 

It's a bummer that one of yours was grade 3 - and the loss of your nipple - your 'farewell and adieu' line made me simultaneously laugh and cry. Don't know about you but I think a sense of humour is invaluable. With the warmer weather coming, it's time to get my pale and unshaved legs out. I told my sister that I'm waiting to find out whether I'm having chemo before I shave them !

 

I think we're alike as I do write things down as I think about them but don't always get time to ask them. I'm also a 'what if' kind but find that the nurses tend to focus on the next stage whereas I prefer to know the bigger picture.

 

I've been getting info in dribs and drabs and I find that frustrating. I'm seeing the oncologist next Tuesday and, whilst I don't relish the thought of chemo, it is something that I need a full and frank discussion with the oncologist about and not simply a crude online tool as my fears will also need to be taken into consideration. 

 

I have remained positive throughout, and played it down to my children (adult boys) and siblings i.e. it's unlikely to be cancer; it's only small; it's unlikely to have spread to lymph nodes; it's only in 1 node etc  My husband knows how scared I am and he has been the voice of reason. Being positive doesn't mean that I'm not scared.

 

You didn't but I'm afraid I have waffled on a bit. Thank you for taking the time to reply. I will continue to research in prep for next week and if you would like to pm me that would be great. X

hopefulholly
Member

Re: Lumph node+ & vascular invasion = chemo?

Hi Vic, mine was grade 2 but I think it will be the positive lymph node / extracapsular spread and localised vascular invasion that could result in a question mark for chemo. My BCN said it was only a small area of vascular invasion, to which I replied that it only takes one stray cell to cause problems, that's my greatest fear right now.

 

As you said, it may be a difficult decision if the benefits are low. I'm actually hoping that a more significant benefit might show up from Adjuvant Online so it becomes a no brainer! 

 

Thank you for taking the time to reply. Wishing you all the best with your treatment. X

hopefulholly
Member

Re: Lumph node+ & vascular invasion = chemo?

Hi DizzyDee, thanks for replying to my post. I will certainly look into Zoladex and discuss this with my oncologist next week. I will definitely be having radiotherapy, followed by 5 yrs of Letroxole ( I'm post menopausal). Wishing you all the very best x

hopefulholly
Member

Re: Lumph node+ & vascular invasion = chemo?

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

DizzyDee
Community Champion

Re: Lumph node+ & vascular invasion = chemo?

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
June_BCC
Member

Re: Lumph node+ & vascular invasion = chemo?

Hi

 

Here is a link to our publication on Understanding your Pathology Report http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/understanding-your-patholog...

 

best wishes

June, moderator

kilimanjaro
Member

Re: Lumph node+ & vascular invasion = chemo?

Hi missmore

 

I think it would be a good idea to have a look at one of the understanding your pathology report sites before you go. I think there is a link somewhere here on this site, which tells you about it and what questions to ask. x

kilimanjaro
Member

Re: Lumph node+ & vascular invasion = chemo?

Hi Dizzy Dee

 

I must admit that I was somewhat taken aback, to put it mildly, that I was told that I couldn't be given a copy of my pathology report at the meeting I had with the breast surgeon and that I had to apply for it via the Access Record Dept at the hospital.

 

Apparently, under the Data Protection Act, you can request a copy of your records and this request should be met within 40 days, although the government guidance for the NHS is that this request should be responded to within 21 days. Either way, 21 days or 40 days is just ridiculous when it concerns something like your own pathology report.

 

I do get copies of letters sent to the G.P. because this is now standard NHS practice and I did not have to register to get the copies sent to me.

 

As you will have read, in the end, I did not get my pathology report via the Access To Health Records Department but was given a copy by my oncologist. 

 

Personally, I would have wanted this report before I saw the breast surgeon but I can understand that not everyone would want to be sent a copy before the meeting to discuss the pathology report.

 

Reading through the threads on this site, I am amazed just how much procedure varies throughout the country, despite the fact that there are government guidelines as to what should be done and when concerning procedure. x

 

 

hopefulholly
Member

Re: Lumph node+ & vascular invasion = chemo?

Thanks missmore, I've added you as friend (my first one yay!). I will rewrite my replies over the weekend when I sit down and relax with a glass of wine!

missmore
Member

Re: Lumph node+ & vascular invasion = chemo?

Hi holly add me as friends and try using pm xx
missmore
Member

Re: Lumph node+ & vascular invasion = chemo?

Oh dee it's a flaming game of poker I feel!
DizzyDee
Community Champion

Re: Lumph node+ & vascular invasion = chemo?

Didnt get ur reply but got this one hopefulhollyxxx
hopefulholly
Member

Re: Lumph node+ & vascular invasion = chemo?

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

DizzyDee
Community Champion

Re: Lumph node+ & vascular invasion = chemo?

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
missmore
Member

Re: Lumph node+ & vascular invasion = chemo?

Hi Kilimanjaro

Just read your post to hopefulholly and found it very interesting

I have had my lumpectomy and sential node removal on 25 may - I will go back to hosp to see my surgeon on 18th june to get my results, all I know so far is that it was an invasive mucinous carcinoma around 5cm with no evidence that there was anything in the lymph nodes and the expected next step will be radiotherapy

It has all happened very very quickly biopsy on a Tuesday, back to see the surgeon the following Friday and was told I could have my op on the Monday if that suited! er yes I said in a daze! So although I did as much research as I possibly could whilst getting my head around the fact I had cancer I am dreading my result meeting - you seem very well informed and wondered if you could perhaps point me in the right direction as to gathering as much info as possible before my meeting?

much love

Sheena x

DizzyDee
Community Champion

Re: Lumph node+ & vascular invasion = chemo?

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
kilimanjaro
Member

Re: Lumph node+ & vascular invasion = chemo?

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

vic55
Member

Re: Lumph node+ & vascular invasion = chemo?

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

DizzyDee
Community Champion

Re: Lumph node+ & vascular invasion = chemo?

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
hopefulholly
Member

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.