Hi
I’m getting confused here. Have just had first meeting with onc and was told that although my lymph nodes were clear and grade and size of tumour would normally entail rads and hormone therapy because there is evidence of vascular invasion he recommends I go through chemo.I realise every onc has a different opinion but I just wish there was a common agreement among them all as to what was considered important. I don’t like the idea of putting myself through chemo if it isn’t going to have a real benefit. I wouldn’t wish this disease on my worst enemy but sometimes I get so annoyed by conflicting advice that I do wish it on oncs. Maybe then we could get somewhere near a shared understanding. Sorry just p*****sed off tonight with the mountain of learning I’m having to do.
Trish
Hi Trish,
Sorry to hear this. I think most oncs would recommend chemo if you have vascular invasion. Something like a third of people without node involvement subsequently get recurrence/mets and among those are people who had no nodes with cancer but had vascular invasion.
Did you talk to your onc about % benefits? Sometimes it can help to know. You could also push your onc on whether s/he thinks yours is one of the er+ cancers which will benefit from chemo (there’s another thread somewhere about the oncotype test but this test is still only in trials.)
best wishes
Jane
PSThe oncotype test is used more widely in the USA. It is a test given to women with er+ tumours with no node involvment. The test examines the genes in the breast cancer and on the basis of some complicated testing decides how high the likelihood of cancer recurrence is. On the basis of the oncotype score the oncologist can then decide whether to offer chemotherapy or not.
Hi Jane,
I think he mentioned adding an extra 6%. He threw ‘vascular inasion’ at me towards the end of an hour long consultation. I’d been sitting discussing everything feeling a tad arrogant about the amount of reading and learning I’ve done, and he’d commented and even made jokes about me being an ‘academic guardian reading teacher’. When chemo came up as being necessary the arrogance in my balloon didn’t just evaporate, it gushed forth.
Have been in touch with GP who is very angry cause I’m very geographically isolated, don,t drive and live on my own. Consensus is that I’m too unsupported to go through chemo on my own here and now an urgent referral has gone off to Christies in Manchester where at least I will be near my son and daughter.
GP said if he’d had any notion that chemo was a necessary he would have asked for referral sooner. There a slight panic on now cos I’m already outside guidelines for waiting times . I know there are people much worse off than me but I just so wish the goalposts didn’t keep shifting. I feel I’m bach inside the nightmare bubble I was in when first diagnosed. I think I posed the question on another thread that I’ve been questioning what the benfit all my learing and reading will have on the likely spread/progress of my own cancer. Seems I’m living through the answer to that question.
Hope you enjoyed your day out. I wish all my good wishes for more good days for you personally could work but we’re both realists, (no cyber hugs, just sharing my thoughts and compassion)
very best wishes
Trish
Hi Trish, I can’t help re vascular invasion, but just wanted to send positive vibes for your need and efforts to understand what it happening to you - it’s not arrogance, you mustn’t think that. You have a right to be able to make informed choices. And there’s nothing wrong with reading the Guardian or being a teacher!! This sh*t is easier for some of us to cope with if we know what is going to happen next and have as much information as we can absorb.
My chemo starts Monday and I’m really wimping - one of the reasons being that I have no real understanding of the pros and cons of the different possible treatments. It’s all very well to just go along with what they recommend, but it’s just not how some of us are used to living our lives, is it.
xx
I saw my bcn on Thursday,she has a counselling service and you can just ring for an appointment.One of the questions I asked was about lympho/vascular invasion which had never been mentioned to me.She said tht any bc which was not encapsulated had the potential to be invasive,hence IDC=Invasive Ductal Carcinoma.However, that does not mean they have definitely spread,just that they could have.She said they first looked at the tissue surrounding the tumour,the margins,and if they got a wide clear margin then invasion was unlikely to have occurred.She also said that,in my case,the oncologist would have told me if there had been any invasion.My chemo was because of my triple neg status not because of any invasion.I thought I might ask the onc at my next appointment,then I thought '‘what the H**l’'it doesnt make any difference now anyway.So I wont!!Love horace(the ostrich)xx
Dear Swissmiss
I had “perineural invasion”. I asked BCC about it some time ago. They were not able to help me - told me they did not think this was the kind of information that is usually given to patients and suggested I take it further with my consultant. I haven’t done this. However, I have done a little research on my own. My own pathology report says: “Tumour is present within perineural channels”. My understanding is that my cancer had chosen to settle in the perineural channel. There are plenty of other channels in which it could have settled but it chose the perineural channel because it found this an easy pathway. Cancer spreads by taking the easiest road and for some of us it’s the perineural channel. I hope that is helpful to you.
We are often not told the full facts about our BC. I have only just found out I have calcifications in my left breast over three years later. I only found because I was misdiagnosed and now have full access to all my medical notes etc. I asked my consultant about my calcifications on Tuesday when I saw him for my two-yearly mammogram. He said he was not in the least worried about them and that thousands of women have calcifications and that this should be the least of my worries. I really didn’t feel I wanted to probe any further.
Good luck and keep well. Spring is just round the corner.
Love
Jeannie
I too have calcifications some of which have been there for years.The new ones were biopsied at my original dx and are apparently totally benign.No change at 1 year mammo.They are in the healthy breast so I am very aware of their existence.
Love Valxx
Hi Jeannie,
Thanks for replying - thought I was on my own with perineural invasion. It doesn’t surprise me that cancer finds the easiest route to take! My understanding was that lymphovascular invasion was invasion of the blood vessels and I think (although I am not completely sure and may be wrong here) perineural invasion is something to do with invasion of nerves. Although I couldn’t take in everything my onc was telling me on dx, I have checked with my husband and he can’t remember this being mentioned. I don’t suppose it matters now because as Horace says, it won’t make any difference and I can’t change it. Unanswered questions though become demons when I wake up at 3.00 a.m. and can’t get back to sleep again, my thoughts turn very dark indeed. I have finished most of my treatment, last herceptin was in January and just on tamoxifen now. Do you mind me asking Jeannie how long ago was it that you finished treatment?
Yes, spring is on the way, I walked round the garden today and saw new buds bursting through on some of the shrubs and trees. I also think that the lighter mornings and evenings help a great deal with especially if the sun is out, you just feel better don’t you. Take care. Love xxx
Dear Swissmiss
Good to hear you have finished your herceptin. I’m also on tamoxifen. I’m getting on OK with it. However, I have put on over a stone in weight and of recent, it’s been getting me down. Whilst I know it’s not a serious problem, it does affect how you feel about yourself. I would like to think that now we are coming into a better period of weather I can lose some weight. Must try hard!
I finished my treatment in November 2005. However, I have had medical negligence - GPs refused me a mammogram on three occasions saying I had nothing to worry about and I was not eligible for a mammogram as I was under 50. You could say I have had a double blow. By the time I put myself into the system my cancer was at Stage 3 and I had 15 lymph nodes with cancer. I am taking it further and I guess for this reason, BC is never far away in my mind. I do lots of campaign work which I find helps my psychological state. My e-Petition finishes on the 23 March 2008 so if any of you care to support it that would be great. petitions.pm.gov.uk/JeannieBC/
With regards to perineural, I have taken the following wording from a cancer site.
“Sometimes breast cancer cells grow around the little nerves that are in the breast. This is called perineural invasion”. I think you are correct in your understanding about it being invasion of the nerves. My BC was found within the perineural channel which I see as a lymph channel that surrounds a nerve trunk.
Whilst I know we cannot change things, I personally feel I benefit from knowing what I had etc. I met a lovely lady when I was first diagnosed. She said to me knowledge was power and I have to say I agree with her. I didn’t want to know anything when I was first diagnosed. From memory, I think it was about a year before I started to get interested, then I went like a sponge and absorbed everything. I’m now three years down the line and I would like to think I have a more balanced approach to it all.
Love
Miss Blobby (Jeannie)