you would think i would know better by now…
you would think i would know better by now… I’m going to change my user name to “Stupid,of Sutton”.For some reason I cannot yet fathom ,I have started trawling through the "john hopkins-ask an expert "site. I swore i wouldn’t do this again as, after diagnosis ,I nearly drove myself to an even early grave with worry.
Anyway -clearly the american pathology results seem to be more detailed than mine are -which caused me to re-visit mine. Needless to say it opened the floodgates of fear and uncertainty which I have been attempting (largley unsuccessfully to hold shut – think I need psychotherapy now but that’s another story!).
My question is (for you who are more informed than me as my head has been firmly in the sand)- I had 2/8 nodes positive. My report says x 1 axillary node positive, x 1 apical node positive. Now I know the apical node is from level 3 ( which at the time sent me into a chasm of despair), but since I remember the BC nurse telling me node involvement was sequential, how can only one axillary node be affected and then jump to a different level. I dont recall having my clavical treated (only got 3 tattoo marks-and i’m sure my friend had one up by her collarbone in addition to her 3). I am now worried that i have been undertreated. I should be reassured as I am treated at the marsden but i do recall the onc thinking i had only x1 node involved but the surgeon emphatic it was 2 (and reading the report this has to be the case as both nodes had different measurements. I know it’s a bit like bolting the stable door after the horse… but hey ho.
I would be really grateful if anyone can shed any light on this -meanwhile my head is going back in the sand.
love cherry x
Talk to the Marsden Dear Cherry
I have died a thousand deaths after reading things on the internet. Think how you are today. How well do you feel? Is it worth blighting your life for what may or may not be happening in your body? Some things are outside our control and to some degree we have to rely on the doctors making the best decisions they can with the knowledge and expertise they have. The Marsden is one hospital that I would recommend because it is a cancer centre of excellence.
Ask why you are getting the treatment you are, and if you feel you need to go and get a second opinion from another cancer centre of excellence, there are several in London e.g. Barts Hospital.
Are you nearing the end of treatment? That seems to be one of the worst times for many patients. Joining a support group may help. There’s a good one at St Thomas Hospital Fridays 11.30 - 1.30 run on a drop in basis, anyone can go. It’s in the Richard Dimbleby Centre in a large tower block opposite the houses of parliament, i.e. over the other side of Westminster Bridge
Mole
Thanks for responding mole, you’ve made me feel a lot better - need to give myself a good talking to ! and thanks for the tip about the support group. I haven’t accessed any support yet other than this web site. One of the problems for me I think was my BC nurse (who is attached to my surgeon, rather than the marsden) sent me on a real downer just after I got my surgery results. core biopsy had shown small tumour , grade 2, but the surgery results were much worse and she did’nt handle me well. I ran away and haven’t contacted her since (incase she tells me anything elase scary)!!
Cherry
Dear Cherry Sorry to read that you are having a difficult time at the moment. If you would like to speak to someone in confidence about your concerns and how you are feeling please contact our helpline on 0808 800 6000 Monday to Friday 9am-5pm and Saturday 9am-2pm. The helpliners are either breast care nurses or have had experience of breast cancer and would be able to offer you support and information to help you through this difficult period.
Kind regards
BCC Host
Hi Cherry,
I agree with Mole. You need to ask. I had 6/14 positive nodes including the apical node. I did have RT up to my collarbone but i only had 3 tattoos. I was told i needed to have this 3rd field treated because of the node involvement.
I did have extranodal extension. Perhaps if your cancer was microscopic they didn’t need to.
You do need to ask. I found the BCC phoneline was very good at giving information and talking things through.
Kelley
Hi Kelly
Thank -you that was very useful- I vaguely recall the radiographers saying something like " It’s 3 fields… " when they were “setting me up”! so maybe I did have the collarbone radiated -yes , need to ask.My node involvement was worringly macroscopic-although no extracapular extension -however they did measure 18mm & 1.5cm-I am amazed at this size that I couldnt feel them as raised -kelly, hope you dont mind me asking but did you have your axilla radiated too?
Gosh Cherryred,
what an interesting post. I too was treated at the Sutton Marsden and hope I had the best treatment going. How did you get such detail about your lymph node status. I had asked for more info about mine but it wasn’t forthcoming. I have not heard the terminology you use but am I right in thinking that the apical node is the same as the sentinel node and is extracapsular extension the same as vascular invasion. If not what are the apical node and extracapsular extension? My one lymph node was 1.7 cms so quite big. I had felt it rather than any lump in my breast. I really wanted to know whether there was any info available from the path lab as to how much cancer was in this lymphnode. I guess as I was not informed that they do not deem this significant . Do you know any more about this subject.?
Secondly I wonder if we had very similar experiences with the same BC nurse. I was not happy with some of the comments I received .
Frances
Dear Cherryred,
Me again, only to say I have just read your recent postings and thought I would say that I think we are on very similar wavelengths where our feelings about this disease is concerned. I am on Tamoxifen and I have had similar concerns about my ovaries. I have discussed this with the consultants but they do not seem keen to carry out the procedure feeling it is unnecessary.
I am trying to get on with my life having recently returned to work in the nhs which I love. But I have been feeling low of late worrying that the ache in my knee joint is the dreaded recurrence. I have spoken to my physio, Gp and friend who was a BC nurse and they all say that recurrence is very painful ad my knee is just bothersome.
I have nightmares that my periods will come back. I haven’t had one since the chemo turned them off in April but I’m always concerned that they may return. I have had my hormones checked (at my instigation) though this doesn’t seem to happen unless you ask for it and i am reassured at present that my oestrogen is low. Are you going ahead with Oopherectomy or have you put it on hold.?
I really regret not having been able to make contact with others in a support group. Just not available it seems if you are a private patient in this neck of the woods.
Hope you’ve had a good day.
Frances
Hi Frances… I had a copy of my path lab report -which i clearly remember sitting and wailing at for a couple of hours when I read it. I “re-visited” it recently when I was feeling brave (silly me)! It states one axillary node 18mm-positive and one apical node 15mm positive. Eight nodes examined in total As I understand it, the axillary lymph nodes are arranged in 3 levels-level 1 being closest to the breast, with levels 2&3 being further up towards the collarbone. My amateur research led me to discover (I think!!-but this IS the bit which confuses me), that the apical node comes from level 3. I know (from the “delightful” BC nurse) that the cancer moves through the nodes sequentially -hence if you have a clear sentinal node -it is very unlikely -though not impossible -to jump nodes.Extra capsular extension means the cancer has broken out of the lymph node into the surrounding tissue-not the same as vascular involvment (which I also had -oh lucky me), which means the cancer has invaded the blood vessels running through the tumour-hence another route the cancer can travel to places where you dont want it to be. I was amazed given the size of the 2 nodes that they couldnt be felt.I think oncs are more concerned about the number of nodes involved rather than the amount in them -but obviously -less is better!
Sorry to have droned on but I know if you ask for a copy of your report they will give it to you , the marsden is very open and will also send you copy of letters they send to your GP, or other professionals if you want them. Are you still being seen there?
love Cherry
i DON’T WANT TO KNOW Dear Cherryred
I think you are really brave asking for a copy of your results. I have decided to bury my head in the sand completely. I work in the histology Dept as a Medical Secretary and it was my boss who reported mine. I have decided not to look at any of the reports as I am scared that the fear will come back as I know a lot of the medical terminology. All I know is that I have ductal carcinoma (don’t know what grade), its Her-2 positive and that 7 out of 23 lymph nodes were cancerous with extravascular invasion (which means it has sprouted a little bit), one being 1.2cm, the others small flecks (boss told me that bit, not surgeon).
I too sent myself mad at the beginning of treatment and it was then that I decided too much information is not always a wise thing. I wrote down my worries and went to see my breast care nurse to get it out of my system and now I don’t look up anything on the internet unless it is survivor stories.
Sometimes not knowing much is better I think.
Mandyxx
ooo , Frances—spooky Dear Frances
I TOO work in the NHS!! and have been treated on robert tiffany!
cant remember where I posted the thread about my ovaries, so aplogies if i’m repeating myself. I have been a bit anal (sorry) about ridding myself of my ovaries. BUPA -who covers me have been very shortsighted and will not allow it as i am currently symptom free (expect they’d rather pay thousands of pounds to treat ovarian cancer -rather than a few hundred to laproscopically remove my ovaries)!They did allow a one off consultation with a gynae oncologist who unwittingly said that he was concerned enough to offer it on the NHS-so I got my GP to write to him asking to be added to NHS waiting list -so here Iam waiting --terrified the BC, or ovarian ca will get me first!
You were clever to get your hormones checked as I never did .worry now every abdominal cramp is their return–or worse!!
I actively avoided support groups as everything terrified me (still does really)-but I am a bit better now -but I do get low, so this site helps me a lot.
Have your knee problems started with the tamoxifen? i had a terrible knee with arimidex.Being nosy now (and please dont think you need to say because i know this is a public site)- but do you work in hospital/communtity etc?
Love Cherryx
Neither did I really… Hi Mandy
Like you, I so did not want to know anything -especially as I had a drip drip drip of “bad news” through out the diagnosis process.And I think I would have preferred not knowing anything at all,however-no matter how I tried ,I always became aware of “some” information -which led to curiosity and endless searching for more positive news. At the begining,I was really dumb and sat down and read through my report -it’s laughable now but some of the stuff i read eg"high nuclear grade"-I actually thought was good news!-i still wailed for hours after reading it -buried it somewhere and tried to forget. Recently I began thinking if I treat my cancer recurrence fear as a phobia , in so far as if I expose myself bit by bit -the fear will be less profound. This is what led me to re-look at my report .I still avoid “unofficial” BC sites and tend to aviod medical ones as they dont pull their punches! Anyway -the jury is out on Knowlege is power/knowledge is fear, for me!
Cherryx
Cherryred - axilla My axilla was included in the RT. Two fields covered my chest and part of the axilla. I had a bollus placed over these fields to so the radiation didn’t go so deep. This area burned and you can still see the outline of this area. The third field didn’t have a bollus so the radiation went much deeper and didn’t cause any obvious skin damage. This covered the area right up to my neck and the rest of the axilla.
My report didn’t mention the size of the lymph nodes.
Kelley
Hi Kelly -As the underarm hair on my affected side is still thin and pathetic (though not complaining about that!) -i guess at least part of my axilla would have been irradiated. I’m not sure what a bollus is -is it some sort of protection? I had x8 booster doses to the tumour area -not sure that’s the same?
Cherry