and also please remember that i was told borderline stage 3, what that means i do not know, but that was by the surgeon, obviously my onc didn't agree with that
What grade were your tumours Kelly?, and as you can see, everyone seems to have different treatment, i am now convinced that because i did not have chemo or rads, well, i just don't really feel that i have had the right treatment, but i feel that if i say anything i will just be seen as some paranoid person who should just accept what i am getting now and get on with my life, i think i actually envy people who have had chemo, how sad a life is that? and please remember that i had typing errors on my histology, it does make me wonder what else they got wrong, but at least if i do get cancer again they can't say i declined chemo.
I'm a bit worried now. I thought i was told i was Stage 2. My TPM was high as i was Grade 3 aswell. I had positive nodes with extranodal extension and lymphovascular invasion. I had 2 tumours and a great deal of high grade DCIS too. I wonder if I heard right. I did haved chemo and RT.
i had dead skin after my recon, my surgeon cut it off under a general as he said it would take my body too long to ingest it, (this is when he told me i would be having chemo!!!!!!!!) i knew with the nipple that it could happen again, so i think the surgeon might just let nature take its course this time, to be honest, i've had 5 ops since the 15th of june last year, i don't want another one for a long time! just bad luck, my skin just hasn't been good enough to get the blood supply to the new nipple, i'm sure your's will be fine, maybe i should have waited a little longer before having it done, i was only 4 weeks post op so maybe my general health wasn't up to it. but whats still alive does look great, i think thats why i'm so upset about it!
Hi Alison - can't believe your bad luck - what will they do with the dead skin? Can it recover? I am not due for nipples yet - my surgeon is waiting for other breast to be done then will do both nipples together - that will be later in the year though.
Lets hope you have an easier run of things now.
Sarahx x x
oh Karen, i thought i had found another lump on the 23rd of august last year, just a few months on from surgery, i waited till the 6th of sept cos i knew i had an appointment with the onc, so i told him about it, it was in my good breast, he had a feel, said it was nothing sinister and told me not to examine myself again and to leave it to the experts. so i worried till the end of nov (had found out about my sister by then) i eventually rang my surgeons secretary, saw him 2 days later, he examined me, said yes there is a lump, he didn't think it was anything bad, but he sent me for a scan and luckily it was just a gland, but at least he put my mind at rest, cos the onc didn't want to know.
Hi Sarah, the recon is great, i am so happy with it, the nipple recon was not quite as good, went and got the dressing off last tuesday and 25% of the new nipple has died, i have been so gutted by that, seems everything to do with this cancer goes wrong for me, just hope that no more dies before i get the stitches out next friday, i just feel like i've been kicked in the teeth on this one xxxxxxxxxx
Hi Kelly, i asked that as well, as that was what i thought, it has something to do with the TPM numbers, apparently the "possible vascular invasion" put me up to borderline, also something to do with the adjacent DCIS which had also reached a high grade comedo,
oh my god Alison.......what you've written is bad enough......can't believe they made more mistakes and what an awful onc., his coments are absoluately disgusting.
My tumour was 12mm, no nodes involved, no vascular invasion....had WLE, chemo, radio' now on tamoxifen.....mind you I had a mix up at first with hospital....had original FNA in early dec., 03...had heard nothing in january..rang secretary who said they had no record of my sample going to the lab.....well...i rang my gp, he rang consultant and about an hour or so later a BCN rang to say they'd found my sample...it didn't have my name on it but it was definetly mine as my paperwork was with it and the ladies name on sample hadn't turned up for clinic that day.....also the sample was benign!....but if i wanted a retest i could have one.....obviously i said yes.....had retest...another FNA, ultrasound, consultant said he would send me for mammogram too.....oh i was given a written letter of apology by consultant and BCN admitted she'd made the mistake.
Anyway...following week got a phone call at work to say why hadn't i turned up for mammogram apt....told them i had not recieved an appointment.....turned out they'd sent letter to old address....so had apt made for asap.....had mammogram done then was taken into room by lady who turned out to be the lead breast care nurse......anyway she said my FNA had come back inconclusive and i was to have a ultrasound and core biopsy there and then......i insisted that the first sample could not of been mine but she insisted it was......any way long and short of it was....went for results on the friday and breast cancer was confirmed.
Not quite as bad as the mistakes that have been made with you though Alison.
Hi Alison - wondered how you were getting on after your hysterectomy. How is your hew boob? Have you have the nipple done yet?
Sounds like your onc was awful - I think you could take if further if you want- that is so bad to have your results wrong in your notes.
A little bit of reassurance though - my mum heard a professor talking on radio 4 and he said that ovaries being removed in premenopausal women is as good as chemo if you are er+. You def did the right thing having all that taken away. I had my ovaires out 3 and half years ago and am very clicky now in my joints. I have a bone density scan every 2 years and that is what you are entitled to and should push for. I also take an aldronic acid every week to build up my bones and prevent brittle bone disease - it is called Fosomax and has to be presribed - ask for that at well.
As for mamograms - def every year - mine was clear in 2006 and by 2007 had high grade DCIS that they said would have been a tumour within a year - by being caught at this stage I didn't need any more chemo. Going in on 14 March for other mastectomy as a prevention - just deciding what recon to have - bit scary having 2 lds.
Take care and sorry you are having a rough time having to question your hospital all the time. This disease is bad enough without chasing your medical team for everything. You should be able to trust them - is your bc nurse any help?
Sarah x x x
Are you sure you were Stage 3? My understanding was that for Stage 3 you had to have lymph node involvement with the nodes stuck together and a tumour over 2 cms.
and Karen, what i have just written about here is only the half of it, its been a lot worse than just the mistakes and awful attitude of the onc
Gosh what a time you have had of it ,it looks like there has been lack of cummication in your medical team somewhere how awfull for you ,you would think that the MDT who are working together on your care would have discussed the error of the grade. Im so sorry youve had to go through all that as if we dont have enough to deal with. I hope your next oncoligist is much better and if you feel it would help get a second opinion.
All the best
Lots of Hugs
i felt very much as if my onc did not like me, he in a letter to this genetic councilor i am seeing on tuesday, referred to me as "a florid Liverpudlian" i was not happy with that either, but it was too late to do anything about that, so i am dreading seeing this councilor! i was asked did i want to take legal action, but i said no, its done now, i won't be seeing him again, just hope this next onc is a bit better, but i think i will push for more than one mammo every three years, that's a long time to wait. what size was your tumour Karen? and did you have lymph involvement?
What a complete muddle Alison.
But I was told that if decided to decline chemo they would look at alternatives ie., removing my ovaries...which i still have although i had a hysterectomy in 1999....so i can understand what your surgeon said.
I was also grade 3.......but i wouldn't be happy about all the errors on your reports....at least they removed the untrue statement that you declined chemo and have corrected the grade.....and yes i do think that if you and they had known about your estranged sister you would of been treated differently......let us know how you get on with genetic councellor.
ps, also, i only found out that my estranged sister had had breast cancer in each breast over a period of 7 years, she is now 50, in september last year, at least i am seeing a genetic councilor on tuesday! but had they have known about my sister they may have treated me differently.
i had a 16.0 mm tumour, invasive ductal, with adjacent dcis which was also high grade, possible vascular invasion, T2, P3 M3, and Ki 32.3%, i had a blue dye axillary sampling two weeks before my mastectomy, had 9 nodes removed and they were clear, this was done first to see if i would need rads or not, as my surgeon did not want to do a mastectomy and immediate ld flap recon before knowing if the lymphs were involved. ten days after my mastectomy and recon my surgeon told me that i was a grade 3, stage 3 and i would be having chemo, when i saw the oncologist 2 weeks later he told me that i didn't need chemo. i questioned this and the onc told me i was a grade 2, as that was what was on the histology report that he had recieved. this onc then wrote in my notes that i had declined chemo, i only found this out when i had my total hysterectomy with bilateral oopherectomy in dec, as soon as i could i got in touch with the hospital (by this time the onc in question had retired), i have now had the "declined chemo" removed from my notes, and the typing error grading me at 2 instead of 3 has gone, had a meeting at the hospital on the 24th of jan and the surgeon had the pathology department double check to make sure i was a grade 3. my surgeon then told me that had i not had my ovaries out then he would be recommending chemo, but since i have had 3 months of zoladex prior to getting ovaries out, and then going on arimidex then he feels that is as good as chemo in my case, i felt sorry for my surgeon as he thought i had declined chemo, so that is what i mean by the sticky end of the stick, its been bad enough having cancer without all this worry on top, i see the new onc on the 20th of this month, its still up to me if i want a second opinion, its just a case of being let down through no fault of my own. hope you understand all i've put down, think i have rambled a bit, but this is why i didn't get offered chemo
I too cant believe you wasnt offered chemo or rads i had a grade 3 tumour no nodes and no vascular invasion , ive had chemo and am just about to start four and a half weeks rads, i always though grade 3 cancers were usealy offered chemo , id have a chat with your oncoligist and get an explanation to at least put your mind at rest. I was also told id have yearly mamagrams for the next 5 yrs, and will also be seeing either the onc or breast care clinic for the next 5 yrs .All the best
I was told I will only get the standard 3yrly mammogram after being dx with invasive lobular in 2005 after screening and having a mastectomy - not much comfort when the 2002 mammogram showed widespread calcification in that same breast and following several biopsies at that time I was then told it wasn't cancer. When I raised this issue after dx in 2005 no-one would answer my question regarding whether I did indeed have cancer in 2002 - then only last month I asked the question again and was told by the same consultant that it was probably there all the time. As you can imagine, the time scale between mammograms for me, now adds to my fear that I will have changes in the other breast that will not be investigated until again I may have developed another invasive cancer whilst also fearing recurrence of the original.Why is there no consistency in the way hospitals offer follow up following BC treatment across the country?
I've never heard of anyone with your dx not being offered chemo.Was your tumour very small?What surgery did you have?I am triple neg and have been told yearly mammograms for life!
a lady who attends the same hospital as me saw the onc last wed, her next appointment is in July, she will only be a year down the line from dx in April, they have not even mentioned when her next mammogram will be, i only know about this three year because i asked about aftercare after my surgery and thats what i was told, my bcn was there at the time, i was also told to keep my mits off my breasts and not to examine them anymore!
My treatment involves a yearly mammogram for first 7 years. I have an automatic appointment for the next one while I'm at the hospital. I thought everyone had a yearly mammo after a BC diagnosis for at least a couple of years after treatment.
i think i just got the rotten end of the stick, i am the only person i know who's grade 3, stage 3, who hasn't had chemo!!!!!!!!!! is anyone else out there like me?????????? Adcal is vitamin D and calcium, i got it off my sister who has had bc in each breast, she doesn't like them so asked if i wanted them, i showed them to my surgeon who couldn't believe that i hadn't automatically been prescribed them with the arimidex
I've always been on yearly mammograms (13 years) and have a 'season ticket' which means that I just ring the hospital and arrange the mammogram myself with them. I have yearly ones because of my family history but Cynthia is right that most hospitals do yearly ones up to the 5 years.
I have mammograms every year, and most of the ladies I talk to do as well, I would get in touch with your BCN Alison and voice your concerns.
When I first finished treatment I was told that I would have a mammogram every two years but this was later changed to every 18 months "because we found that two years between mammogram was not soon enough for some women" (this was after I had waited the two years!). Four years after dx I have never been offered a bone scan or blood tests or anything. In my area you can pay for a bone scan (Â£40) and since I am on arimidex I have asked to do this. It really does seem to be a post code lottery, as Cynthia says, but really we should all be entitled to the very best they can offer!
That's wrong about your mammogram. You should have one every year up to 5 years. But you do have to remind the onc team when you go for your 6 monthly check up! I had to mention it to the registrar who I saw last summer. And within a month an appointment came through. So as usual you have to push for it. Same with a bone scan. I didn't have one before I started on Tamoxifen, but when I was changed to Aromasin I tried pushing for one, but didn't get anywhere. That is one of the reasons I have come off it, because of the high risk of osteoporosis. Since my hysterectomy I've had more aches and pains. But at my age I have to expect it. Its the shoulder and arm pain thats given me most gip and its gone on for so long!
I also had no bloods taken. I find it strange that with your cancer you didn't have any chemo or rads Whats adcal and whats it used for?
Anyway Alison you push them for a mammogram and bone density scan. I think whether you get certain treatments or not is down to postal lottery!
Anyway, good luck xxxx
Lots of love,
after reading some threads on here i am getting a bit confused, i had a grade 3, stage 3 invasive ductal and was dx in june last year, i had no lymph involvement, but possible vascular invasion, i was not offered chemo and didn't need rads, i kicked up a fuss about my ovaries as i didn't intend to go through the menopause twice, and in dec last year had the whole lot removed and am now on arimidex. i take adcal, but only because i had a big load given to me, i have had no bone density scan although i have suffered horrendous joint pain since starting firstly on tamoxifen and then zoladex prior to my hysterectomy, the arimidex seems to be making the joints even worse, but the hospital don't seem that interested (though my surgeon has said that i should have a bone density scan!), and have been told that i will only have a mammogram every three years, also, i have never had bloods taken since surgery, what after care do other women get?