What to ask oncologist??

Sorry if these extra thoughts have come too late. Also, if this bothers you - can you cold cap? My hospital isn’t keen on cold cap for metastatic cancer and my experience when I had it during primary cancer was that it didn’t work for me anyway. The hospital should also give you a voucher for a wig, which will cover most if not all of the cost. 

Also ask about free parking as you will be there a lot. 

Completely agree on the port. I had one fitted when I first had chemo in 2022. I still have it. 

Not too late! Surgeon said it was chemo without hair loss.... it doesn't bother me much anyway. And my hospital has free parking for all patients and visitors! 

Thank you all anndanv ellie 73  eddiel Stella2020 Coddfish 

My plan is to let him tell me his stuff, then check question list for anything not covered. Including what exercise I can do with spinal mets (please let pilates be okay). 

38 mins til appt so see you afterwards

Lex

xx

onwards and upwards, thinking of you.

Hope it all goes well

Well. Completely different from what the surgeon said. Taking a while to sink in. No chemo, instead targeted treatment with CDK4&6 inhibitor - abemaciclib. Swapping out tamoxifen for letrozole (hormone therapy drugs) as tamoxifen and abemaciclib together increase risk of blood clots. And adding in a bone strengthening drug - denosumab - but only after a dental check (which is great as I don't have a dentist). Monthly blood tests, scans every 3-4 weeks. And I'm getting a head scan to check for brain mets. He doesn't want surgery to remove the tumour and pre-cancerous cells, and would use radiotherapy instead. I'm very against this as it risks damaging my heart. But that's aggggggges away anyway. 

He said no to any exercise other than walking or swimming. No bending, no lifting, no twisting. No pilates, yoga, tai chi, or anything like that. 

Change of specialist nursing team, I'll meet with one of them in the next fortnight. 

And without telling me, he ordered 3 boxes of immodium. I'm on opoid painkillers and currently taking laxatives. I feel 3 boxes of immodium is overkill.  

I am a dentist so would advise you to have a dental checkup ASAP. With denosumab there is an increased chance of jaw bone infection if you need any teeth taken out in the future. It is best to get your teeth checked and any extractions carried out ASAP. You may have to go private as NHS dentist are as rare as hen’s teeth. 

He's seeing if someone at dental school can help as i have no dentist. Yeah, he said about the bone death in jaw (osteo-necrosis?). It does not sound fun!!

I am glad you now have a plan, every one gets a plan.

Think i did say could be a target chemo.

How do you fill now, taking it all in, i bet.

Now you know and in one way, do not have to rack your brain of what might be.

I have heard of people doing very well on that drug combination, you will probably find other people on the secondary breast cancer pages that are on it. I am sorry it’s limiting your exercise options; hopefully things will change as your mets shrink. Don’t turn down the Immodium - there’s a definite risk of seesawing between both ends of the spectrum. I hope you can find a dentist.