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Delay of the treatment

7 REPLIES 7
Shi
Community Champion
Community Champion

Re: Delay of the treatment

Danny, please pop into your breast unit to see if you are able to discuss everything with someone in there before going to pals. I am sure your unit would be horrified they had caused you any additional distress. Then if you still wanted to go to pals you can. You as an nhs nurse knows how much pressure everyone and the system is under, but I hope you know how grateful people are for everything everyone who works for the nhs does. Maybe because you are a nurse too, they think you are 💪💪💪than others. Shi

DannyS
Member

Re: Delay of the treatment

I really will do it...I am an nhs nurse  and I have been patient...really patient because I  know the pressure we all work under,  but I have reached the point now....my breast nurse phone is always on " leave a message "....PALS office it will be  next.. thank you 

Shi
Community Champion
Community Champion

Re: Delay of the treatment

Danny, I can hear the frustration in your response. Get yourself to your trusts pals office and do an official complaint, get everything ready so it’s bullet point fashion and stick to facts, they will investigate and by doing this you will be helping yourself and others too. It might give you a little bit of feeling back in control instead of waiting for your unit to keep you informed. As I previously said the breast nurse you have been assigned at your trust is there to help and support you through the journey, if you don’t get on with them, go to the unit and ask to be given another one. The nhs is there for you and the priority should be your care. Take it all up in the pals office. Hope this gives you a starting point and gets you answers and some better care. Shi

DannyS
Member

Re: Delay of the treatment

Well I had 4 different occasions of biopsies because  "you see we have missed something,  or so many samples....sorry we have overdosed you with lignocain because we used 2% instead of 1%"....sorry  come again in two weeks time...

 

 

 

 

 

Then...yes you had an operation,  but we didn't clear the margins.....

Yes, we did the second Ca operation,  there is still a bit of cancer remains....the chemotherapy will help...... 

I am sick of it........two months after the second Ca operation I am still waiting 

Jaybro
Member

Re: Delay of the treatment

 Hi Danny

 

If it’s any consolation, my consultant told me I was clear of cancer after my surgery. I had a full mastectomy and full axillary clearance. The oncology nurse later confirmed it - future treatments are determined by what they find during surgery. NICE recommends that chemotherapy starts within 90 days of surgery (I had to start mine on Christmas Eve to get me in on time) so count from your last operation. If time is galloping by, then start nagging them! The difficulty right now is you’re reeling from the diagnosis and surgery, wondering what the hell is going on inside (probably nothing right now), and delays seem interminable. However, it would be in nobody's Interests to put you at risk by an unnecessary delay so they must be confident it’s all in hand.

 

Hope you hear something soon or get reassurance from the breastcare nurse.

Jan 

Sue C
Community Champion

Re: Delay of the treatment

Hi Danny

Your treatment begins with surgery, so you've already began and got a major part over with. Follow on treatment usually starts within 12 weeks. If this is not the case, then as Shi says speak to your breast care team.

Best wishes 

Sue xx 

Shi
Community Champion
Community Champion

Re: Delay of the treatment

Hi Danny, sorry to hear your team have not been keeping you informed. Please speak to the breast nurse you would have been assigned to in your unit at time of diagnosis and also please use the ask the nurse facility on here, they will be able to help guide you with your questions. Hope this helps Shi 

DannyS
Member

Delay of the treatment

Good morning! My first biopsy came back positive at the end of April.  It was followed by another 3  biopsies ( so I had them in 4 different days)

Then I needed an MRI.

Then I went for operation. 

Then I went for second operation. 

Now waiting to hear from oncologist. 

It is almost 5 months since I was diagnosed and I am concerned that my treatment has been delayed for too long...should I worry?