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never imagined getting biopsy results would be so confusing - Need to Vent!

2 REPLIES 2
nahdiak
Member

Re: never imagined getting biopsy results would be so confusing - Need to Vent!

Hi Jaybro, 

 

I have thought so much about this post.

 

Yes fingers crossed, I should get my letter soon telling me I have the all-clear, will believe it when it is in my hand.  

 

Your point about the fear of diagnosis when the prognosis of Breast cancer has never been better is a great topic of discussion and reflection.  I think even though we know this, we all hear and have experienced stories of people having cancer that put the fear of god in us.  The treatment scares us, chemotherapy, radiotherapy, images of people looking pale and with no hair.  It also feels like an illness that doesn't discriminate, i.e. it can happen to anyone and you won't know if that is you.  Our mortality means we don't know if we are likely to see tomorrow let alone what might happen in the future, but yet we rationalise that we can't control that in order to survive as a race.  

 

How can we de-stigmatise and make people see it as something that can be managed and treated, especially if picked up early is a great thing to get behind. 

 

Thank you for engaging me in this debate. 

Jaybro
Member

Re: never imagined getting biopsy results would be so confusing - Need to Vent!

Hi Nadia

 

You don’t sound self-indulgent. You sound frustrated, understandably so. A benign diagnosis may be exactly the news you needed to hear but you’ve experienced a few weeks of mini-hell, imagining the worst. This is what I would be ranting about - the imagining. We know most breast lumps investigated turn out to be benign so why do we jump to breast cancer immediately? Why is a breast cancer diagnosis so terrifying? Why is our society wired to equate a cancer diagnosis with a death sentence? Treatments are improving every day; the recovery rate from breast cancer is higher than ever, 90% in the first 5 years, 99% for the 67% who have tumours restricted to the breast only. That’s pretty good odds! Yet we put ourselves through utter misery by jumping to conclusions. It puzzles me.

 

As regards the inefficiency of the NHS channels of communication, if you went into treatment, you would see how desperately overworked and understaffed they are and excuse their inefficiency. ‘My hospital’ is a regional centre of excellence - they only just got me into chemotherapy within the 90 day period between surgery and treatment recommended by NICE - too many people seeking treatment there. Letters that go to my doctor are copied and pasted so, as far as my GP is concerned, I’m still scheduled to have a bone scan (I had it in February and I had an MRI in August that is not mentioned). For all their deficiencies, I’d still say my treatment has been excellent, over and beyond... It’s hard to accept that we are each just one tiny fish in an overcrowded pond when our fear is so great but they can’t change that level of fear any more than they can make their communication more patient-friendly (I’m surprised you were given a diagnosis over the phone, but glad you were).

 

I hope that you will be in a position soon to let go of this awful experience, obviously hugely relieved you don’t have breast cancer. I’m happy you’ve had this fortunate outcome. But maybe you’ll join me in pondering the whys of this specific disease. For some, it is terrible but for most, it’s treatable and we just work our way through it - so why are we so bloody terrified by the mere idea??

 

All the best now you are ‘free,’

Jan

nahdiak
Member

never imagined getting biopsy results would be so confusing - Need to Vent!

Hi forum members, 

 

I am so exhausted mentally from my experience and my anxiety is through the roof, so could do with some helpful and supportive words of advice 

 

I have been awaiting my core needle biopsy results on a suspected sebaceous cyst since 27 November. Was never even expecting the biopsy and this is where it all started from an anxiety perspective. Anyway fast forward I called them this Monday at the breast clinic to hear that my Doctor was going to write to me about my result. This morning I received a copy letter from the Consultant to my GP saying that I had my ultrasound on the 27th November (the letter was dated a day after my US 28 November but arrived today). I presume within the 14 day period they have to respond.

 

There was no mention of my biopsy - i called back the clinic to find speaking to another member of the reception team that my biopsy hadn't actually even gone to the MDT meeting which meets every Thursday. I was very upset saying why was I told that it had, and that i would be written to?  The lady on the desk could understand my concern and said that she would speak to the Secretary of my consultant and she would call me. 

 

She did call me and verbally told me that my pathology had come back with 'benign breast changes' she said that the Trust has a policy to refer all cases to MDT regardless of a benign result and that after this they would be in touch. I was so anxious and unsure following my experience with the clinic telling me that it had been discussed - that I made her repeat a number of times that she was sure the report said benign breast changes and she said, yes. 

 

Apparently they said the MDT was only able to view certain cases last Thursday as the full composite of doctors wasn't there - what would happen to urgent cases in this regard - they just get bumped for a week?

 

I am hoping that this now means that whatever the issues is, it is not cancer as the pathology is negative for cancer.  

 

I understand the pressure that the NHS is under - but I wish they would understand that casually just saying oh yeah no it wasn't discussed at that meeting and is still in the queue creates massive anxiety for people waiting for results. 

 

Rant over, sorry just needed to vent!

 

Apologies if i sound self-indulgent!