Treatment based on post op NPI score. Tumour shrunk by pre operative Anastrozole. Confused.

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Hello, I’m new to posting but found this forum after my mx six weeks ago. Since then it  has been a great source of information and succour;  just reading the posts made me feel less alone. 

 

I am worried my treatment options may not reflect my true level of risk. I have seen a differentt consultant at  every appointment since my  “suspect” mammogram call back in January.

 

My initial scans & core biopsies, indicated a multi focal, grade 2, ER+, invasive tumour (either one or several close together, possibly two different types). Based on this info I was advised that I needed a mastectomy and  ongoing Endocrine Therapy for 5 years and might need post operative radiotherapy,
I was recruited into the POETIC trial which involved taking Anastrozole (Endocrine Therapy) for two weeks peri and two weeks post operatively. I was told Anastrozole was prescribed routinely for my type of cancer after surgery.

The post op histology  showed a 4mm invasive, multi focal, ductal carcinoma and extensive DCIS. The sentinal lymph nodes taken for analysis were clear. 

This was good news as it gave me a Nottingham Prognostic Indicator score of 3.08 - low risk- I was told no further treatment was required but offered the option of taking Tamoxifen for 5 years.

The surgeon delivering the results asked why I had chosen a mastectomy as it was “a bit of a sledge hammer to crack a nut” then looked back over my notes, and said the tumour had appeared larger (25mm) and may had shrunk in response to the Anastrozle  I had taken as part of the trial.
I asked about continuing to take Anastrozole  because it seemed to have been effective against my cancer but was told it was not available to me. (local guidelines do not offer it to low risk patients with a score of  <3.4 on the NPI). 

What bothers me is that my risk score seeems to have  been calculated on the basis of the final histology rather than the extent of the tumour prior to my taking the trial drugs. 

The other possibility is an incorrect interpretation of my pre op tests- if that is the case I am fine  with the mastectomy but wonder if they will want to tell me.

 

Any one out there had a similar experience?

 

Thanks,

 

Jan

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Hi JJan

Whilst you are waiting for the others users to reply with their experiences you might find it helpful to talk things through with a member of staff on the BCC helpline.

Here you can share your thoughts and concerns with someone who will offer you a listening ear as well as support and practical information.  The number to call is 0808 800 6000 and lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.

Best wishes Sam, BCC Facilitator

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Hi JJan, I had a very similar cancer to you by the sound of it, but was premeno. I thought anastrozole was one of the three AI’s available that could be swapped between if the SE’s on one type were affecting QOL. So I am confused as to why they would say it is not available to you now, particularly after you had a good result from it prior to surgery.

Have you had any answers yet? I would be very interested to hear.

Take care and I hope your husband is feeling better too.

x x x