Elinda
Also had 4 positive nodes so am expecting the full 9 yards although Grade 2 - I was originally told at beginning of May when diagnosed it would be lumpectomy and rads by the time I have finished it will be mx right side with reduction on other breast following first op then chemo then rads - I think they just dont know until they have all the information from the lump. Clearance was the bugger though I wasnt expecting the numbness and then pain from that!! I am er+ but still dont know about HER status - will have to make note to ask about that next visit. Have had some very black days to be honest but as a result of diagnosis have had CT and bone scan which came back clear so hanging on to any positive things that I can.
Denise
Hi Elinda
Don’t think you are alone in this. I worry about the extent of my lymph node involvement. I also had lobular breast cancer Grade 2, Stage 3b. I noticed changes in my breast for over four years but my GP said I had nothing to worry about and I was refused further investigation. Hence my cancer was allowed to develop to the extent that when it was found it had made its way into 15 lymph nodes. I know my prognosis because I’m taking matters further and these are the kind of things you find out. But these are only figures and I have to believe that even although I had large lymph node involvement I will lead a long and happy life. I’ve had four years free so far and I try not to look for trouble.
Keep well.
Jeannie
Nice to see so many prompt replies. Thanks especially to Lucy(BCC) for the link on cancer fatigue. It may be that I’m over the worst where the ‘fatigue’ is concerned.
I probably should start doing some regular cardio training (running) to help increase fitness and start getting strong again. I’m hoping this will also improve my concentration levels and memory!!
Salopets, what is PM? Sorry I’m new to this. Personal Message perhaps?
Regards to all,
Didi
Jeannie
I was really interested to read your comments as I too went to my GP 3 years ago with a tiny lump I had found smaller than a pea and was told it was nothing, possibly hormones. Went back again a couple of months later with the same thing and discharge and was still told nothing it was just because I had very fibrous breasts. I have now had a 3.5 cm lump removed from the same place and all the surgeons I see tell me it probably isnt the same lump. I’m not buying it frankly and I wouldn’t have carried on for so long had I not been told that it was just how my breasts were. I have lymph involvment 4/23 and will have chemo rads tamoxifen. have just had bone and ct scan and they are clear but I cant help feeling that they are just a snapshot at that time. I was interested to read that you are taking this further, you keep well too.
Denise
Dear Momo
Someone said to me the other week that it is anger and the determination not to be dragged down by the system that keeps me well. I actually think they could be right. You will, no doubt, have come to realise that taking matters further is very difficult and with the “closing of the ranks” it is almost impossible to get any fairness and justice. With regards to your own breast cancer, you do not say if you were diagnosed with a Grade 2. I’m no expert here but my independent clinical oncologist said that a Grade 2 is considered relatively slow growing which makes me think you have probably had your cancer for quite a long time bearing in mind the lump was 3.5cm. Interestingly, I also had very fibrous breasts. At least your bone and ct scan were clear which is great news.
Good luck.
Jeannie
Thanks for the words of encouragement - I was probably feeling a bit sorry for myself at the time. I keep reminding myself that I’m not a statistic and women do live long lives in spite of lymph node involvement.
Jeannie, it’s much harder for them to close ranks if you get a good solicitor, someone who specialises in clinical negligence. Are you going down that route? It is a toughie but stick with it because that sort of GP attitude is so wrong. I think more of them need to think what would they want done if it was them or their wife or daughter.
elinda x
Hi Jeannie
It was Grade 2 and I have to say although the doctor i saw at the time has now left, my surgery are now very much ‘anything we can do to help’. I really do wish you luck with the course you have chosen and I dont count myself out from eventually pursuing that same course but first I have more surgery - I have had therepeutic mammoplaty sorry one glass of wine and the typing is crap - mammoplasty which was great but they have now decided i need a mastectomy and it is my choice whether or not I have bi lateral. That will be followed by chemo and then rads and tamoxifen but should I choose I can have ovaries removed - 43 and three kids- I wont have any more! i am still reeling from the shock to be truthful, feeling a bit defeated, and if I am really honest I feel really disappointed with myself that I didnt pursue something that deep down I wasnt happy with. That coupled with the fact that my father was very ill two years ago with a bad back, weight loss etc and saw his doctor thirty odd times before calling an ambulance and died three weeks later from pancreatic cancer. My surgeon is great but doesnt understand why i won’t trust anyone - go figure! Although the next person that tells me I am still in a ‘moderate’ group or leans forward telling me it will all be fine I will thump!!
Ha! yes anger and determination its all coming back to me now!!!
I was interested to hear on the Dawn Porter programme that cancers take between 5 and 10 years to become palpable so i suspect your’e probably right, somedays i do feel like no one will ever give me a definite answer again.
Lots of rubbish typing and another half glass of wine I am off now - love to all - this thread is a very informative one!!!
Denise
Hi Denise - I know what you mean about not being sure you are being told everything. The team who are looking after me now are great, but 4 years ago the same breast was investigated ( by a different team)and after a fine needle aspiration and comparing previous mamograms was told all OK. Now I don’t know if they made a mistake or suddenly a non-cancerous fibrous mass plus fluid filled cyst can just turn into cancer, which seems to be what has happened. Wish I could just concentrate on getting better now and not think what might have been.
Clare
Hi Girls,
Just a wee question about grade 2. My lump was grade 2 but I’m Her2+, if I decifer that then it would mean a realatively slow growing tumor but Her2+ makes the cells divide quicker making the tumor happen faster??? Can you see my confusion?
Can anyone throw light on this?
Fiona. X
Hi Fiona
I think you are spot on! But my understanding is that it is unfortunately very rare to be HER2 as well. I am HER2 and Grade 2 by the way but hardly anyone else on here is. I was told my cancer and probably been there for quite a long time. I was lobular - hard to detect on mammograms. I think it must have been there 18 months earlier when I had a mammogram and they didnt see it. What I havent figured out yet is whether Herceptin responds better to Grade 2 cancers. If they are only intermediate logic seems to suggest that it would. I was told Herceptin would only make a 7% difference to me.
Hi there
I’m grade 2 ER+/ PR+ HER2+. I too was very confused by how a HER2 cancer could be ‘only’ a grade 2 as it is very aggressive.
My understanding is that the added aggressiveness with HER2 is accounted for when grading the tumour. In other words, without the HER2 we might have been grade 1. Hope this makes sense?
Hi
That sounds good to me. I would really like to think so. Grade 1 without the HER2 bit.
x
Hi,
I had the grade 2 result 2 weeks before I had Her2 result? Would be nice to think that was the case of grade 1 without but not so sure. Funny thing is I don’t ask Onc enough questions, he’s a bit brisk!!!
Fiona. X
Hi all
Just jumping in on this one.
I was Grade 3 and HER2++ (HER2 result given 3 months after other results), so therefore should be very aggressive. But had 0/9 nodes and no vasc. inv. or spread anywhere, all nicely contained and out with 1st wle.
Weird isnt it?
I can see that I must get more involved with my own treatment as I don’t know a lot of the facts that others do. Will rectify that soon. Dx in Jul '09, lumpectomy done, no lymph involvement. Stage 1, grade 2. To decide chemo or not tumor was genetic profiled. Has anyone else had this done? I came out a 15. 18 is definite chemo. Sounds great, but onc intern I saw drops to an 11 to make sure. Will see regular onc next week, but I want some info to make good decision. How did some of you figure the percent of increase in your odds if you took chemo?
Hi sh57
Welcome to the forums, I’m sure other users will be along to support you soon.
In the meantime you may find it useful to contact our free helpline on 0808 800 6000, opening hours are Monday to Friday 9.00 – 5.00 and Saturday 9.00 – 2.00
Best wishes
June, moderator
Got my results from my op yesterday . Stage 1 and Grade 2 for me too ! Diagnosed July 17th op August 10th ,WLE and SNB .
Just under 2cm ,no node invovement . Started Tamoxifen yesterday and waiting for appointment to commence 15 sessions of rads.
Seems like most here had rads first then started tamoxifen.
Hi gocat - I think some people just request a delay in starting tamoxifen - my rads finished in July and am not starting until September - my decision - couldn’t face it before (am still not entirely happy about it)
Hi,
another grade 2 here,dx Feb 08, 2.3cm, ER+, PR+, HER-. I had just the sentinel node removed and it was clear. Scans all clear. I had 8 x e/cmf chemo and 15 rads, finishing on New Years Eve. I started tamoxifen (well bullied onc into nolvadex-d and no sweats at all but do get a bit hot) on the day I went for rads planning. I was told they do this in our area to keep continual cover. The last chemo covers you until the rads, which are 3 weeks later. They start the tamoxifen then because it takes 3 weeks for its protective effect to kick in. They then say you are protected as rads finish. Chemo for everyone in our area under 50 so just did what they said, after being told we are a centre of excellence. What a sheep!Unfortunately heard too many stories of little tinies coming back like a piranha so just had the lot and for me that was the right path but we are all so different.Very stiff, feet like cement when I first get up.
Lots of luck to you all
Lily x
that’s interesting Lily - v similar dx to you 2.4 cms ER+ PR+ clear nodes from SNB - was just given 15 rads, no chemo - I’m 50, so I guess past the cut off possibly. My onc and surgeon were ok about my delaying tamox. (I was doing a big job with deadline at same time as rads so felt it’d be a bit much starting tamox. at the same time)