I know that I need to talk to someone at the hospital about this but wondered whether anyone had any information or thoughts to share as my mind is just going round in circles at the moment. I was diagnosed last October and had a WLE with SLNB followed by rads x15 plus 5 booster sessions and will take Letrozole for 5 years. My SLNB was clear and my tumour biopsy results were 8/8 ER positive and I was told I had clear margins and no need for chemo. I had an early menopause at age 40 and am now 56. When I asked I was told that the cancer was grade 3 and also that the actual size was 19mm not the 13mm that I was originally told from the mammogram. I asked for a copy of my path report because I felt that I was only told bad news when I made a point of asking and had it not been for this site I probably wouldn’t have known to ask. On reading my path report I have found that I had extensive lymphovascular invasion and it also says “ Margins: deep involved by invasive tumour, DCIS less than 1mm. Other margins more than 16mm away.” Until I read this on leaving my oncologist appointment I had no idea there was also DCIS involved. To my untrained brain this doesn’t sound like clear margins to me. I then looked online (possible mistake!) and found a site called Cancermath and using the treatment outcome calculator I found that adding chemo as a treatment reduced the 15 year death rate from 13.6% to 7.5%. While I still feel that this could have been so much worse without the early detection by mammogram I want to be sure that I am having the best treatment and will not regret later having not fully explored all possibilities. My questions are : should I have been offered chemo and a re-excision?
I would ask them to explain so you are happy with the explanation and treatment plan. Ask for an appt with the breast care nurse initially and then with whoever you need if you are still unsure.
Hi Cracker77,
I would agree with toriaconey. Ask for an appointment with your breast care nurse to explain why you have not been given chemo etc., and if still not happy take it further.
The nurses on here are also worth talking to especially as you may not get your appointment straight away with the hosp BCN but you could also chat to her over the phone.
Try not to worry (easier said than done I know) you are doing the right thing, concerns need to be dealt with.
Take care
susan
Hi
I would definitely ask your BCN for an explanation. Clear margins are a must and you need reassurance you had them.
as to chemo, there are different models which do not always agree. In my case grade2, bit of DCIS, 38mm, no nodes, intra vascular thing ?. I was borderline for chemo, 3 to 5%, with 1% risk of really bad side effects. I am younger and pre menopausal. My oncologist was more concerned about benefits of tamoxifen. The benefits if chemo diminish with age, i am told.
i suspect given your age and the effectiveness of hormone therapy, your benefit for chemo is no where near as high as the model you found on the internet.
You definitely should ask for confirmation and peace of mind.
Wishing you well.
I agree with the others. You must ask for a full explanation of why you are not being offered chemo, and don’t let yourself be fobbed off. The first thing that strikes me is that your tumour was grade 3, which is the most aggressive grade. Just having a grade 3 should have rung chemo bells at your oncologist without the lymphatic vascular invasion. My tumour was grade 3 invasive, I had clear nodes and no vascular invasion, although I am HER2+++. I am to have chemo - no choice, as the benefits according to the medical prognosis predictor “Adjuvant!” are huge in percentage terms.
I wouldn’t worry too much about the DCIS involvement. They found some of this lurking inside and round my grade 3 lump after my lumpectomy. The surgeon got good clear margins round the invasive tunour, but the DCIS extended into one of those margins leaving only a tiny 0.5mm clear margin, so I had further surgery to get a wider margin. I asked what would happen if they didn’t get clear margins round the DCIS and was told more than likely I would have a week of booster rads after my normal rads and this would take care of any left behind. (Chemo doesn’t treat DCIS by the way, only invasive cancers) This explains why you had your 5 booster rads.
Hi
lola, i wish you well with chemo. It sounds like you will be having herceptin which is only licensed with chemo. I know from others that herceptin is a good treatment and works well.
For hormone recptor BC, the hormone therapies work well particularly in older women and chemo is not always given. I gather this age thing is about actual age with length of time from menopause. With us women in between young and old, is where there are debates. We certainly should be informed of the whys and wherefores of decisions.
As patients, professionals do have to judge how much information we can take. Certainly as the fog lifts following treatment, i have questions about decisions. in the vast majority of cases, nothing has been missed but communication gives peace of mind.
Thanks Rosebud. xxx
There are so many different variations in our tumours and ages that I would like to bet there are very few on this forum with an identical dx and identical treatment. It must be a nightmare for the professionals to find the best treatment for each one of us. Rosebud - you hit the nail on the head with the word Communication. I find this is what is lacking in my experience over the last 3 months since dx. I have been told only what is necessary and what they think I need to know. I have had to find lots more out myself from the path reports and reading material. Basically, if you don’t ask, you don’t get to know - and asking isn’t easy when you have no reason to believe you need to ask something!
Ramble over!
LS - yes, we have a very similar diagnosis and have followed the same path. I got my second results last week and now have good clear margins. I think our biggest difference is that I am hormone neg. so no tablets for me. I saw my oncologist on Tuesday, am waiting to have a portacath fitted, and have my pre-chemo assessment on 18th. So all systems go!
Thank you all for your replies. I now feel more confident to contact the breast nurse at hospital and will phone on Monday. I guess I just wanted someone to say that I wasn’t just being silly and making a big fuss over nothing. I feel a bit odd over the whole thing, its such a rollercoaster of emotions. I have been really positive and upbeat until now about the whole thing counting myself lucky as apart from the grade 3 it seemed fairly straightforward. I just can’t understand why I haven’t been given any kind of explanation at all. The oncologist I saw after surgery actually asked me what treatment was planned for me! I felt it was all pre planned and the results after surgery weren’t even considered. I realise that is most likely not to be the case its just how I felt. I was hoping to see the main man at my most recent oncologist appointment but saw the same oncologist as before. She asked when my next appointment with the surgical team was and seemed surprised when I said I thought I would have a follow up mammogram a year after surgery. This is what others have been told so I assumed it was standard care. I most definitely want a mammogram at that stage so I probably should check on that too. I think I have just lost confidence overall. I had originally felt very happy with the treatment but the conflicting surgical information (I have been told clear margins 3 times and not clear margins on 2 occasions plus the path report)as well as the oncologist seemingly not to know anything about me has really knocked my confidence. I thought it was essential to get clear margins or at least to make a second attempt. I really am confused but will definitely phone on Monday. Good luck Lola with the chemo. Gentle hugs x