I have recently been informed that they do not routinely test DCIS at Glenfield - did you find the same thing?
Have you been given a diagnosis of DCIS at Glenfield Hospital ?
Did you have a core biopsy and WLE ?
Were you given a hormone receptor status ? ie. Are you er+ or er- ?
Are you on Tamoxifen or have you been given some other medication?
What advice did you receive from your consultant with regard to taking the medication?
Thanks for your help
Maddy xxx
My DCIS was found when my tumour was taken out and it was tested for grade and for oestrogen and progesterone. I was also advised to take tamoxifen for five years. I had low grade DCIS and low grade cancer (the tumour was cut up when removed but was apparently between 1.5 and 2 cm big so quite small). My consultant said tamoxifen would reduce my chances of recurrence by half.
I asked for a copy of my pathology report so I know what it says. I wonder why your hospital doesn’t test, surely to diagnose you they must look at the cells.
Mole
Hi Mole
Hope you don’t mind me asking but your post above sounds a bit similar to me. My DCIS was 1.6cm, removed by WLE and deemed ‘medium’ grade. I saw the consultant yesterday. The lump was removed with clear margins and the lymph nodes were also clear so excellent news all round ;o) He said it was hormone receptive but the side effects of taking a daily pill would probably out way the benefits. 25 sessions of radiotherapy to come in 2-3 weeks. I see from your post that it reduces the recurrence rate by 50%. Perhaps your situation was different? At first I was chuffed I wasn’t being given a daily tablet but now … I’m not so sure.
Cheers
Lynne
The 50% figure may sound better than it is, because it is 50% of your personal risk of recurrence. In the case of DCIS it is going to be low - maybe only 2-4%. Halving this takes it to 1-2% but it was pretty negligible to start with. I gave up taking tamoxifen after two years because I didn’t think the side effects were worth it. I also had an invasive tumour which you didn’t have as far as I can tell, so my risk is bigger than yours, I decided to take that risk. Ask your consultant what your risk would be with and without tamoxifen
With tamoxifen I had constant hot flushes, constipation, indigestion in the early months, so for me it wasn’t worth it
Mole
Thanks for your reply, Mole.
I can see why you gave the tablets up!!! I didn’t have an invasive tumour only DCIS so perhaps he’s decided my risk is so low that the side effects would be worse - sounds like he’s right if yours are anything to go by!
Cheers
Lynne x
Hi Lynne and everyone,
I had DCIS treated by WLE , 5mm focus, no micro invasions,clear margins (nearest margin 1.8cm), then radiotherapy. I was told that DCIS is not routinely tested for hormones receptors as they would not recommend any further treatment anyway. At first I thought that was good news - but some of the posts on this site, and some info on the american sites has got me worrying. My oncology was handled by Charing Cross.
Anyone with same experience?
Best wishes to all,
Jojo
Hi Mole, Lynne and Jojo,
Thanks for your comments - unfortunately, as you have not been treated at Glenfield, your input has not really helped - but Jojo it was interesting to read what you said about DCIS not being routinely tested and no further treatment - as mine was classed as ‘high grade’ with ‘angry cells’ I was taking Tamoxifen to prevent a recurrence in the other breast - but was waiting for the hormone receptor results to confirm that I actually needed it - without the results of a test how can I make an informed decision with regard to continuing taking it?
Maddy x
Hi Jojo
That’s interesting about hormone testing DCIS as my consultant told me at diagnosis that my treatment would be WLE, 25 radiotherapy then tablet for 5 years. It was only last Wednesday when I got the ‘clear margins’ result he said no tablet as side effects would be worse.
Maddy - Do you think it depends on where we live as to what treatment is ‘standard’? Glenfield Hospital is in the next county down from me. You’re right, you can’t make an informed decision if you don’t have all the facts.
Lynne x
Hi Lynne
Yes I think treatment does depend on where you live - but also on whether your consultant feels it’s necessary - my surgeon thought Tamoxifen was necessary, my GP agreed, the rads doctor disagreed, but one of his team thought the test result ‘would probably be positive!’ !!!*
The reason I want people who have been treated at Glenfield to contact me is merely in order to check that they haven’t just lost my results ! ie. they did do the test.
Maddy x
Hi Maddy,
I was treated at Glenfield Hospital, but not sure that I am much use to you as it wasn’t DCIS. I had an IDC grade 3 and my treatment was WLE,6xFEC, have just had 2nd of 25 rads, started on Tamoxifen last week, and start Herceptin in March…
My onc is Dr Khanna, and when I asked about my prognosis, he told me that in Leicester we get the very best treatment there is. I have to say that I can’t complain at the treatment I have received, but it does sound as if you need to insist on obtaining your information.
Karen x
Hi Karen,
I agree that we have had the very best treatment at Glenfield (and LRI) - treatment took place very quickly after the original diagnosis.
Good luck with the rest of your rads sessions -I had 25 and only had a small area of skin which rebelled under my breast - keep up the aqueous cream, but they will notice if you need anything else.
My consultant is Mr Dzumhur and he has been really great - I’ve got an appointment in April to see if I can have my left breast reduced - he did originally say that I could have my right one ‘tweaked’ but there is such a big size difference (and I do like to go topless on holiday even at my age - 55) so I’m biting the bullet and going for yet another op - maybe they’ll remove the areas which could develop DCIS and I can stop taking the Tamoxifen!!!***???
Best wishes
Maddy xxx