Hormone Therapy
I had a double mastectomy two weeks ago and need to take letrizole. I have also been told to have a bone scan and PET scan. I have a few questions, firstly, when should I begin taking letrizole, do I...
Forum Discussion
Thank you for your reply arpie, I haven't been referred to an oncologist. I had 2 lumps both showing that I had invasive ductal carcinoma, both hormone receptive positive. During surgery I had my sentinel lymph node that showed I had a 1mm micrometastasis (I was assured that this was really small) and that I had clear margins. I am thankful that I have been told that I can avoid chemo & radiation, this is probably why I wasn't referred to an oncologist? I had a breast care nurse who saw me before my operation & once in hospital but I haven't spoken to her again. A lovely community nurse visited me a few times till last Sunday, when drains were removed. Unfortunately during this whole diagnosis I have discovered that my GP who I have had for 30 plus years has retired too. It is after all the rush of appointments, biopsies and the operation & last visit with the surgeon that I am trying to work out when to have these next scans and when to start taking the letrozole? I feel a little overwhelmed, the rush of all that has happened & trying to be relieved but still feeling fearful of hormone blockers and whats next.
Golly gosh Nutmeg - I am sorry that your GP has retired :( It is just an added bit of stress that you didn't really need. :(
To be honest, I am quite surprised that you haven't been referred to an Oncologist and/or rad Onc too. The fact that there were micrometastasis in the sentinel node tests .... really indicates you should have at least ONE appt with an Onc and also a Rad Onc, just to confirm your surgeon's decision not to refer you or needing other treatment.
Is your surgeon a dedicated Breast Surgeon or is she a 'general surgeon'?
I really think you should contact your Breast Care nurse again - and ask her why you weren't referred to see an Onc and/or Rad Onc. They should also be able to help you with your ongoing scans & other appointments.
take care xx
Yes, she is a Breast surgeon and had an assistant Breast surgeon (who originally owned the practise for many years) working with her so I have felt I was in good hands. Oh dear, this is a little nerve racking. I will try to get in touch with my breast care nurse tomorrow. Thank you.
Hi Nutmeg
I agree with @arpie - you would expect to be referred to an oncologist, if only to confirm your surgeon's suggestion. I had only one affected node and my oncologist recommended further treatment. And carefully explained why - information is really important. That doesn't mean you will necessarily require further treatment, simply that your surgeon and oncologist have different specialisations and different focal points. There is usually a benefit in understanding both. Ultimately you will be the one to decide what path you want to take and why.
With so much going on, do you have a trusted relative or friend that can go with you when you have consultations? Another pair of ears or someone with your list of questions can be very helpful - we've all forgotten to ask something that turned out to be important! My oncologist gave me written information about all my treatments - immensely helpful as I could turn to them any time and find out what I wanted.
I hope your breast care nurse can assist. Best wishes.
Re-reading your original post, Nutmeg - Having the double mastectomy definitely reduces the chance of recurrence/progression - and would be the reason for your surgeon not suggesting seeing an Onc .... as most of the flesh from the breast has been removed ... but sadly, it isn't a guarantee. I know that I would just want a chat with an Onc and/or Rad Onc 'to be sure to be sure'!
When do you see your surgeon next?
Having the bone scan is pretty standard & the PET scan is good to show everything 'as is' right now - and there is something to compare with further down the track too.
Are you staying flat or will you have reconstruction!? We have private groups for both if you want to chat about either choice.
take care xx
