Last treatment questions

Hi there,

I have been in treatment from Nov 2019 and on 22nd Feb I will have my final cycle of Herceptin & Perjecta (I’m still to take Tamoxafin for 5 years) I was diagnosed with Invasive Lobular, ER & HER2 positive. I am 45 and I think I am post menopause but I am not sure. 

I was wondering if anyone would share what questions they had at the end of their treatment as I am not sure what I need to understand/know.

Thank you x

Hi Shannara,

I can’t help re q’s about the end of chemo, however re Tamoxifen and you thinking you might be post-menopause… if you are, the onc team might suggest changing the hormone medication from Tamoxifen to Letrozole or similar, which is supposed to work better on oestrogen produced by fat cells etc in your body, as opposed to Tamoxifen which works best pre-meno when the prime source of oestrogen comes from the ovaries.

I’m aware Letrozole can cause some loss of bone density in some women (there’s a leaflet on Letrozole in the info section on the main part of the BCN website if you want to look before your appointment). So you might want to note down any q’s about pro’s and con’s of Tamoxifen v Letrozole, the bone aspect, whether this can or will be monitored in any way (or whether self-monitored). Given Tamoxifen and chemo can send periods awol you might want to consider asking if they can test your hormone levels to work out if you really are post-meno.

I wasn’t anticipating the above to come up at my 5 year review, since I thought I was pre-meno and that Tamoxifen had just impacted on periods. Hence I wasn’t ready for the Letrozole line…I pushed back (it wasn’t anyone from my usual onc team), they tested my hormone levels, and I was relieved to hear I was pre-meno and could carry on with Tamoxifen. If I hadn’t have had the test they’d have put me on Letrozole…and I was concerned about taking it when relatively young in terms of bone health. 

I’m sure others will post soon re end of chemo and q’s to ask.

I hope your appointment goes as well as possible.

XXX Seabreeze       

Hi Shannara

Congratulations on reaching a key stage in your treatment. It’s a bit of an odd time - you are so used to having hospital appointments and treatments scheduled, then suddenly it’s a tablet at night and that’s your lot. Maybe a follow-up phone consultation in 3 months and your GP still inaccessible owing to Covid!

My first response to your question about what you need to know is to ask yourself carefully, what do you really need to know and want to know? Some people are happy to accept what information their oncologist leaves them with. Others go armed with lists of questions. Only ask about prognosis if you are confident you can handle it emotionally. Some people might be told 95% chance of no recurrence and then become obsessed with that 5% chance. If you are a worrier and can’t rationalise your anxiety, steer clear. What will be, will be anyway.

Three important generic questions come to mind: 1. Who is your point of contact from now on and for how long? 2. What will be your follow up plan (how often will they make contact with you? Will there be any tests apart from the annual mammogram?) and 3. What specifically should you be alert to from now on? I add that one because I was told to be vigilant about any changes around my mastectomy scar but I didn’t ask what they meant by changes!.

Charities like Breast Cancer Haven are offering a range of free online support courses, dealing with anxiety, exercise, nutrition etc. It’s worth looking at the menu. And of course, we’re still here for questions and support. The fact is, life is just a little different now. I wish you all the best,

Jan x