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Complicated diagnosis

4 REPLIES 4
Marie9
Member

Re: Complicated diagnosis

Hi,

Thats a good idea thanks. I’m on ribociclib and fulvestrant. The oncologist is hopeful that this has a better chance of shrinking it than chemotherapy and I know I’m lucky to be able to access these drugs. It was stressful though that the oncologists didn’t agree as a team about the way forward. I do have confidence in my oncologist though.

First scan after Christmas so trying to live one day at a time to get through it in the hope it works. It’s so tough.

 Thanks for your advice. Will check 

Marie

Mai7
Community Champion

Re: Complicated diagnosis

Hi Marie9, good that you’ve managed to quickly access the CDK46 inhibitors and I’m glad to hear your plan is falling into place.  I can see your point about not knowing where you belong between primary and secondary.  Have you looked around the forum for anyone else on CDK46? Look for threads with Abemaciclib or palbociclib. Best wishes for your treatment.

Marie9
Member

Re: Complicated diagnosis

Thanks so much for your reply.

Im on the CDK46 drugs rather than chemotherapy and the hope is that this will shrink the tumour initially then I will have radiotherapy to the breast, armpit and neck areas as well as targeting the intramammory nodes. 
Oncologist is unsure when I will progress to radiotherapy as it depends on the response to drug treatment. 
Good to hear you have come through your treatment plan.

Mai7
Community Champion

Re: Complicated diagnosis

Hi Marie9, sorry you find yourself here.  I just wanted to say hi.  Hopefully someone will be here shortly with similar experience.  I was stage 3b at diagnosis in March 2019 and had chemo, surgery, radiotherapy and now on Tamoxifen.  I had 9/12 “armpit” nodes involved and had radiotherapy to my intra mammary nodes and supraclavicular fossa as a precautionary and I’m still doing well.  Have they offered radiotherapy to these nodes?  This technique is fairly new and may not be rolled out nationally.  The radiotherapists have specialist training for this treatment.  

Marie9
Member

Complicated diagnosis

Hi,

Im new to this forum and feeling devastated by my recent diagnosis. I’m hoping to connect with someone who may have had a similar experience.

I was diagnosed with primary breast cancer in June, had surgery in July and was due to start radiotherapy in September. My oncotype result suggested not to have chemotherapy. The day before radiotherapy started I was contacted by the oncologist secretary and had an urgent appointment the following day. The radiotherapy planning scan showed another tumour in the internal mammary node which is not operable. This had been present on the initial MRI scan but missed by the radiologist! I have therefore been on the wrong treatment plan. I am now having drug treatment rather than chemotherapy initially then radiotherapy at some stage. 

I feel that I don’t fit with either primary or secondary breast cancer groups at all and the rollercoaster of my diagnosis has been really traumatic. Having initially been given an optimistic prognosis I’m now feeling really overwhelmed.

Would appreciate hearing from anyone who has had a similar experience.