No I wasn't on a trail. I think I was put on it when I was diagnosed because they knew at that point that I was er+.
My dx was a little unusual because I had a microduchetomy so therefore they had a lot of the pathology of my cancer at the time of dx.
I was determined to be er+ at the point of dx and was put on Tamoxifen immediately. I was off it for two weeks prior to my surgery then have been back on it since. I am having my radiotherapy now.
Thank you so much ladies - I still dont know what I will decide but it is really helpful to hear others opinion - and sorry that you have had such a bad time starfish. I was having the cold cap and wondered whether if I kept my hair on FEC I would continue with that but I think that hair is coming out anyway so at least I wont feel that it has influenced my decision. Which sounds horribly vain. I had 4/23 nodes affected and have had reduction mammoplasty already followed by a m/x which was all before chemo, so wondered whether this is whether they were offering tax too but it just seems to depend on the onc you have at our hospital.
Have a good weekend
I was Grade 2 lobular with 6/21 affected lymph nodes. I had 4 FEC/4 taxotere. I am 57. I was not given a choice. I had the attitude have the attitude that at least if it comes back I have had and done everything | could. I think you need to know the percentage difference between 6 FEC and 3 and 3. Taxotere is said to be very good. But I found the side effects appalling. You may be lucky and suffer few on taxotere. If you do suffer side effects there are few antidotes unlike FEC. Yes you have the sickness tablets but there are a whole raft of extra very unpleasant side effects which can be suffered. I guess what I am saying it is not something to be undertaken lightly and only if you absolutely need to have it. I feel I am still suffering the side effects one year after finishing and also feel it contributed to the onset of the lymphodema I now suffer from as I was so ill and in bed on taxotere and there unable to exercise and keep the lymph flowing. I hope this helps with your decision.
I agree - would take the taxotere. I was given 4 ec and 4 tax before surgery to shrink the lump. The ec had a small effect, but the tax really gave it what for. The lump went from 5.5 cm to 2cm.
Well tax has been described as the current 'gold standard' chemo for primary bc and not all oncs are willing to offer it.It is very expensive.On the other hand if your cancer comes back and you have already had tax it is unlikely to be offered again.
Myself I would have it now [I did].
Hi everyone - well first one down 5 to go - s/e's bearable bit like early pregnancy for me. Hope everyone else whos just started chemo and everybody else is ok. Worked out today that last chemo is Xmas Eve - guess what I'll be having for Xmas this year! Have even been to work today as I'm thinking I might go back for the second two weeks of each cycle if I can manage - tons of people do I know - can't bear being in the house on my own now the summer hols are over. My onc gave me a choice of 3 fec 3 tax or 6 fec - is anyone else in that position - dont have to make decision yet but if it doesnt make any statistical difference and I can manage fec might just stick with that but how do you make an informed choice!?????
yo ! just updating - 17 days now on tamoxifen and all ok..can't decide if tiredness & general anxiety is my usual state or tamoxifen-fed 🙂 I suspect it's my usual state really.
Hi Lyn and everybody else,
Thought I'd bump this up in case anyone wants to share any news or chat...
You're right Lyn we do have to trust what they say, but it's hard isn't it, especially when you read on here of people being offered different things to you despite similar diagnoses ?
Sorry to hear about the sickness Lyn. Hope it soon calms down.
I am now 2 weeks (approx) into Tamox and have rads planning on Monday.Not really chuffed about either but getting on with it.
How is everyone else doing ?
Hi second graders
this thread has calmed down lately - I am in touch with a couple of people on another chemo thread but thought I would catch up with the rest of you. I asked my chemo ONC why I have not had other scans and he said that any cancer cells left behind after WLE and ANC will be microcells and not visble on a scan. But you still think 'could there be secondries alreadyor Bigger cells?' Just have to trust what he says I suppose - from their stats grade 2's dont require them - di have pre op chest xray and ecg etc.
I had my first FEC 100 yesterday - not too bad until the evening when the sickness reeled in - managed to sleep a few hours and rested a few more. Very dizzy/heavy-headed like flu or hangover - bright red face - took masses of tablets this morning and still have a few more ant-sick up my sleeve for later. Don't really feel like eating though. Love to you all Lyn x
interesting about the clips. Mine was tunnelled up as well to save my cleavage they said! our surgeons are all onco plastic surgeons so I think they all do that. Then the cardio vascular surgeon made a big scar right across my chest and round my neck when he put the port in and messed it up! Ask about hormones if they don't themselves. We have to start them at the same time as rads as tamoxifen takes 3 weeks to protect you. They are really into chemo in our area, basically anyone under 50 and quite a lot who are over 50 too. There is so much different advice around but you have to make sure it is a thought out decision and not just a cutting costs exercise to not give scans, etc.
Lots of luck to all of you just starting off
good luck for your meeting tomorrow - I hope you get the answers you need. I have a meeting with my oncologist tomorrow as well, so guess we are mirroring each other all the way!!!!!!!!!!
Yes it was your post I saw on another thread !!!
we had our ops on the same day !!!Same op as well
Diagnosis virtually the same( mine was 11mm plus 2mm DCIS) but they say I don't need chemo...(I am 43, so a little bit older than you)
Am hoping to ask about it at meeting tomorrow, but i think that might be just with radiologist/radiographer (or whatever they're called) so there may not be an opportunity for more general questions.
just been reading this thread and have found it really interesting.
Annalou - I have titanium clips because of my WLE scar not being over the lump, so they are markers for the rads treatment - was it my post that you saw???
Well, I had a 13mm grade 2, HER - ER + and PR + and a 6mmDCIS, WLE and SNB on 21st August. Nodes clear, no vascular invasion and meeting with onc tomorrow to start FEC x 6 then rads then tamoxifen. Oh and I'm 37.
I have found out on another thread what the clips are !! And found someone else who has them !!
Apparently, if your scar is not directly over where the tumour was, they use the clips to mark the spot for rads etc. My lump was right on the bra line of left boob, over a rib, so she made the incision a good way further over towards the nipple. This is for cosmetic reasons, so I can still flaunt myself in bikinis and low cut tops without showing a scar !!LOL
So... mystery solved!
Have planning meeting for Rads tomorrow. What fun.Need to get long list of questions ready...I just hope the onc/radiologist is approachable like my surgeon and lovely BCN.
Hope all other grade 2s doing ok today...?
Anna I have my appt to see Oncology radiologist on 17 September, then I will know whether 3 or 5 weeks needed. Not heard about those clips you described although I was originally due to have a wire inserted as tumour not felt as a lump, but that wasn't done in the end, just lots of pretty drawings in blue pen. Really want to get on with it and blast away any of those pesky little cancer cells that might still be lurking. Yes I know our friends and families have their lives and I am definitely not forgotten, its just they cant understand why I need to worry anymore. Glad you are feeling a bit better with anti-deps. Big hugs to all you other grade 2 ladies.
Hello again ladies
The grade 2 club is getting bigger
I did not know anything about titanium clips but my surgeon did say he would identify the tumour area for the radiotherapist, maybe thats what he meant. I am poking about trying to find them now!
I asked for a copy of my histology report - very technical - but readable.
Kerry you have got to wait a long time for your results! That is awful - you need node results to find out what further treatments are recommended - does seem very slow, you just want to get on with it - especially after all that surgery.
Anna I am glad you are feeling the benefit of the anti-dep at last - saw my chemo Onc today and he said I had one of the modern 'good' one's - cipralex (escitalopram) similar to yours? Does not help with sleep though.
I will be starting 3 x FEC then 3 x TAX in a fortnight so look out for new chemo post. The extra benefit re 10 year mortality of the chemo is 9% and 9% for aromatose/tamoxifen (combined 16%!) so worth going through all the SE's - hugs to you all Lyn xxx
never heard of the clips, will have to ask when I go in October. I am post surgery, chemo and rads but still not brave enough to see my results on paper. Maybe one of these days and then maybe I'll keep my rosey glasses on a bit longer, the view might be better.
Hi to all the new ladies and fingers crossed for you all both through treatment and after. I had 42 prescriptions while on chemo and a few while on rads too so might be able to help if you are troubled by side effects. My speciality 🙂
Yes daisy I think it is something like that, but I am not having chemo. My consultant ( when asked) said there were some 3-4mm metal clips left in me that were used to close off blood vessles and to pinpoint where the tumour had been for future reference. Also in the armpit where I had 4 nodes removed...
Hi I had a tag inserted into the tumour before chemo and surgery this was to use as a marker when they scanned me and to show location of tumour.On ultrasound it was a little breast cancer ribbon shape, also had blood vessels clipped.Don't know if this is the same thing you had annalou.
Also Grade 2 1.5 cm IDC with DCIS. Had core biopsy (which came back B1) then lumpectomy which came back as Grade 2 IDC with DCIS and then had Mx on 21st August with ANC. I am still awaiting results of ? lymph node involvement and receptor testing. See the Consultant again in 2 weeks and have yet to have meeting with oncologist. It all seems to be taking ages. I think next appointment I will ask for a printout of my histology, just out of interest, and because I haven't really been given a massive amount of info...hoping they don't think that because I'm medical I know what's going on! I don't.
So..I have no idea as yet what's next. The sooner I know that the better. This site has been a brilliant source of information though and the ladies on it :-).
Good luck to everyone and thinking of you all. I'll post more when I know what's happening next, no doubt...
Lyn, I am now noticing some benefit from the citalopram antidepressants ! Hurray !! Have slept almost normally for 2 nights, am eating well and feel able to act almost like my old self again.
( fingers crossed Tamox doesn't interfer with this positive effect, trying to get as much sleep as I can before the advent of hot flushes etc )
Laurasue when is your planning meeting? Like you, I have also noticed a decline in messages/support from friends and relatives. They seem to think I am "better" now I have had the op !! I suppose it's only to be expected, they have their own lives to get on with !
By the way, did anyone else know about the little metal (titanium) clips they leave inside you after WLE to show location of the tumour? They did not even tell me about this. I read it somewhere and asked, and now I am sure I can feel those things tweaking me...
Take care everyone,
goldwing i cant help much with the dizziness but the bone pain is really common on arimidex and that is one of the reasons they send you for a dexa scan.
it often means just taking strong pain killers to counteract the pain.... my mum has been on arimidex for years... she takes naproxen which is an anti-inflammatory for pain but has to take omeprazole along with it as it upset her tummy.... she started getting pains and woken from her sleep almost immediately... she has changed beds mattresses, got mattress toppers etc but nothing helps... she wasnt keen to take the pain killers regularly but as its been so uncomfortable she has done... and she wont know if it will go away until she stops the arimidex next year.
i would recommend if you are getting other symptoms either speak to your gp or medical team to find out if its a side effect or something else coincidental.
hope things improve.
It's my first time on this site posting. I was diagnosed with Grade 2 lobular last August, after going for a check up as I had a large cyst the other side. Nothing showed up on the initial mammogram- but the MRI scan found something suspicious. After 3 WLE operations during the following months 4 small tumours were removed. Luckily I didn't have chemo as my lymph nodes were clear. I had 18 sessions of rads and now take Arimidex. I have returned to full time work but constantly wake up with back/hip pain. I have had some random dizzy spells and get really breathless. Is this anything anyone else is experiencing? My GP doesn't seem concerned. I have a mammogram in October which I am not convinced is the right procedure for Lobular cancer. I try not to worry but it would be nice to hear from anyone else with similar experiences.
Hi i am grade 2,mixed lobular/ductal cancer 5cm with lymphovascular invasion and skin involvement er+ her2+++.I've had snb, tch chemo x6, mastectomy, rads and now tamoxifen and herceptin.I think I,ve got a bit of everything!
Hi Ladies (thanks Lyn for making me laugh!)I too am a grade 2 having just been given this news on thursday after sentinel node and lumpectomy on 26 August following routine mammogram, no lump felt etc. I have mixed IDC and Lobular cancer, left breast, tumour 1 cm but they have got in all out and node clear. Was originally told needed an MRI as mammos do not always show up lobular cancer......then had phone call to say, after a team meeting, they decided I didn't need this as my mammo films were very clear. I sort of worry now though that they may have missed something.
Anyway now waiting to see onocology radiologist to sort out my radiotherapy sessions, sounds similar to your situation annalou. I have been given Arimadex as post menopausal, I'm 58, though I know I have to have them SEs sound horrible. Maybe I will be lucky!
I am feeling quite positive but anxious at the same time that it really has all gone and whether it will return. My family and friends seem to think its a done deal now after my "good news" which I suppose it is when you consider what others go through.
Its great to have this forum and all of you lovely ladies to chat to and unload all these conflicting emotions.
Laurasue (Chris) xx
Hi Lyn, what a lovely posting - thank you.
Great news on your axillary clearance. I've had 6 chemo sessions so far (2 more to go) and although I've had lots of problems it is doable and we get through it. I keep focussed on what it is doing to the cancer and take one day a time through treatment. The support on this site is amazing and has helped no end.
Hello Grade 2 ladies - sounds like we've passed a piano exam!
Got the results on Thursday from my axillary clearance op - 24 nodes all CLEAR - halleljah - only 3 nodes from original op to cope with. I did not see many others mention vascular involvement (which I have) and I almost had skin involvement too as to get a healthy margin my surgeon had to shave away at the fat and 'sub' skin so the area above my lumpctomy has a very thin layer of skin (originally he was going to remove skin but rassesed during the op. The vascular involvement and 3 nodes means I definately get chemo even thouh i'm 52. I have private medical through work so I am seeing an Onc on Monday at The London Bridge HospitalWe'll see if he recommends any further scans - will not be because of money saving if not I suppose.
Chipper are going to start taking the Tamoxafin now? - the benefits must outweigh the SE's.
Elinda there are lots of node involved ladies who are still around to see their grandchildren grow - just hold onto that and know that you are one of them.
Anna - I too am on anti-depressants and seem to be coping quite well now after 3 weeks - just focusing on each step at a time.
Jeannie - wish you luck with your battle against the system- NHS - if the anger keeps you going good luck - I spent the last couple of years being angry and frustrated due to some unfortunate circumstance when my mum died (bit of GP negligence too) and other family problems, I did not take it further because her husband did not want to - but sometimes I feel that the anger contributed to the BC developing - I may be wrong but it was a negative emotion for me -I am now taking stock of things and ready to move on to a new life stage when the treatment finishes - I am trying to be more tolerant of people and accepting of circumstance - chill pill. I had a detailed mammo at Kings College Hospital in London in Sept 2007 and they said I had benign micro-calcifications - grew to Stage 2 - 5cm by June 2009!!!!
Denise good luck to you too.
Lily - thanks for your support and guidance - I will start up the chemo thread in a few weeks.
Hugs to all you grade 2 ladies - Lyn xxx
sorry this happened to you too buddy but everyone will help all they can. Just keep switching threads as you go through different parts of the treatment. Takes a long time for it to sink in and even longer to push it to the corner of your mind (still working on that one myself). Just keep chugging on through your big tick list in the sky of things to do and apppointments to go ot. I just thought about the one next thing I had to do and it helped me to not be overwhelmed by it all. Nothing hurts when you have rads. Tattoos on your first appointment some people feel but they are usually tiny like a pen spot or mole. You are often only in there 2 minutes.
Big hugs buddy
can I join you ? ( have "met" chipper, gocat and a few others on another thread I think..)
I am 43, mum of 2, boy 12 girl 9.
Got my official results yesterday.
had WLE on 21/08/09 (and sentinel node biopsy thing with blue dye and radioactive tracer)
11mm IDC with 2mm DCIS (left breast)
Grade 2 of course
2 sentinel nodes plus 2 others sampled all clear
ER+ (not sure about the fraction out of 8 thing other people have quoted, they didn't tell me that)
HER2- after inconclusive reading on first test they did FISH (?) test to confirm
PR not mentioned at all ???
They have recommended 15 rads, planning meeting is next Weds
And Tamoxifen, which I am nervous about.
They said chemo would not be of significant benefit but did not give me the percentages. I was glad not to have to have it.
I have not been offered MRI or bone scans or anything. I asked cons and she said it was not relevant or necessary in my case.
Was almost elated yesterday with results being "good" but today feel rubbish and anxious about starting the treatments.I am on anti- depressants from GP as have a history of depression including PND. Only been on them 2 and a half weeks tho so not really working yet.
Love to all
gosh you were brave looking up stats. It was ages before I could do it. Good for you. It depends on your individual onc as to what scans you have. In my area everyone routinely has a chest x-ray, ecg, bone scan and CT scan. In other areas they don't scan unless/until someone has a problem that needs checking. I think it might be saving money but the other argument is the risk associated with too much radiation, etc. I have not had an mri scan but most of the local ladies I know have to pinpoint tumours.
It does sound like so much treatment when they reel it off. I used to just think about the one next thing I had to do as looking way ahead can be scarey or overwhelming. I am at the end of 3 ops, 28 weeks chemo, 15 rads and so far 6 months through hormone tablets. It still surprises me how that time passed by, which seemed so daunting. Find some ladies going through chemo at the same time as you by putting a post and it will be the best support in the world. My chemo buddies are still there for me.
Lots of luck
Hi - Grade 2 IDC dx 15 July 2009 - Oncoplastic WLE and SNB 6 August - er+ pr+ HER2 - DCIS in margins - Both sentinal and one suspect node positive for cells and vascular involvement. Not sure what stage yet as I have just got out of hospital after node clearance - awaiting tests to see how many involved. Still to see oncs but surgeon told me I will have chemo (I'm 52) and rads, also 5 years of 2 drugs (can't remember first one) but second one tamoxifen. All sounded so much treatment - not offered any other scans yet - should I be? Am prepared to throw everything at it. I went on Adjuvant Online program and the number of nodes involved and chemo treatment/tamoxifen seeme to make a lot of difference to prognosis and recurrence rates. Anyone similar to me? Lyn xxx hugs to you all.
The docs seem to agree about Tamoxifen being one of the most successful drugs they ever had and not in just one small survey either. The protective effects last years after you stop taking it too. Glad to hear you are going to take it and hoping it will be an easy step for you
Lily - I didn't even query chemo,or think to ask whether there'd be a benefit,however small..I think sometimes if you don't ask you don't get told information..I hadn't considered chemo would come into it.
If they'd given me a choice that would've been hard too ! I think had I been through the rigours of chemotherapy I'd've not questioned tamoxifen as it can't be worse than chemo. However,as tamox. after rads is my only line of defence, not having had the purging of chemo , I'm going to try it.
I started Tam last Thursday so will look out for your thread Chipper and Jelly Legs 🙂
Only taken 4 so far but just seem angry the last 2 days like PMT. Probably something to do with the weather lol.
jellylegs - we could start at the same time for moral suppport and have an encouraging thread - someone sensible suggested this to me on my other thread about refusing tamox.
Hi, I'm post surgery 18 days WLE and was given perscription for Tamoxifen this Thursday.Have yet to see onc re Rads.Still not sure about Tamox myself Chipper I'm 51 and not looking forward to the possible SE. But its got to be better than the alternative!!
I think it is the way you get the news that accounts for some things. I was never actually told chemo would make very little difference so did not have that to consider. Since finishing,I have been told I would have been in a good position without any treatment but have had a lot of treatment to improve that further. Onc told me at the start that chemo would significantly improve my outlook as I was rather young (48 then). He said age was the thing I had going against me. It would be a lot easier if they all spoke the same language!
With regard to the tamoxifen, it was no big thing to me after surgery and 12 visits to the chemo unit. Dropping to one tablet a day and 2 minutes on the table was quite celebratory.That sounds terrible now, but that was how I felt after 7 months chemo.
To me even a 1% better chance of keeping my feet on planet earth with my family, would be worth going through a lot for so I always come down on the side of treatment. (Get that tablet down asap to keep you safe x)If I hadn't done everything they recommended, it would be worming its way round my head all the time, giving me no peace.
Wouldn't it be fascinating to go to another onc or several and see how they would deal with our individual tumours.
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)
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
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)
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.
Welcome to the forums, I’m sure other users will be along to support you soon.
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