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Tamoxifen

12 REPLIES 12
Charys
Community Champion

Re: Tamoxifen

It is very sad to hear that you BCNs are so harsh and so unfeeling, that isn't the usual experience people get - though of course not all 'BCNs' are equal lol Are you in a different part of the UK - like the outter hebrides or something where good practice policies haven't yet reached? OK, that was a joke about the outter hebrides, as I don't want to make a comment about medics who are perhaps giving a great experience there, but it was the furthest place I could think of.

Re: Tamoxifen

I know Charys it is funny, it’s so ridiculous. What’s even funnier, is that I contact the BCN and it’s them who insist I go back to my gp. No compassion. And I’m on a trial and haven’t heard from anyone regarding that.......... I could actually right a book about some of the thinks I’ve gone through. I had fantastic support initially but very quickly you’re forgotten. Great to have your support and understanding though. They haven’t a clue what it’s like, BCN think they understand but they don’t else they wouldn’t be so hard and heartless. Not even a kind word.

Re: Tamoxifen

Where are you ladies from that is terrible I got 6 monthly mams and only just gone onto yearly in my last year I'm 5 years out my nurse is my angel !! They sending me for bone density now as been off tamoxifen now 12 weeks I need to start another eastrogen blocker but not if I have bone thinning I'm not rather take risk of recurrence that could be fixed being crippled can't be reversed xxx anyone had to make this decision please. I've had pollyps removed from womb and have got prolapsed bladder . I want an hysterectomy too get it out then lesson my chance of uterine cancer too xxx 

Re: Tamoxifen

Omg yes you have get in touch with your nurse please

Re: Tamoxifen

Omg I got mama grams every six months and yearly check up with consultant ring and complain you have been neglected . Law suit I say

Re: Tamoxifen

Hi Kickass,
If you haven’t already, it might be an idea to feed back your experience to the NHS Trust treating you.
I can’t for the life of me, see why the BCN cannot refer to get your left breast checked out as well. If nothing else, it could be viewed as a waste of the GPs time if it can be sorted out at one go.
I work for the NHS as a non medical practitioner & I can certainly refer directly for medical opinion & not have to go through the GP.
It sounds like their processes need looking at.
How frustrating 🙄!
ann x
Charys
Community Champion

Re: Tamoxifen

I can't understand how my right breast can be in the system but my left keeps getting discharged and referred!!!!

 

I'm sorry, its not funny, but it really IS Smiley LOLSmiley LOLSmiley LOL

 

That is absolutely ridiculous, I don't understand it at all. So they just deal in parts of a person now and not the whole person where you are ? Its the same body, the same condition....the same concern...the same team........Where are you anyway ?

Re: Tamoxifen

Jumping in slightly out of context ( I'm on tamaxifen too ) but wanted to show the varying degrees of treatment throughout the country. I have found two other lumps in my healthy breast over a period of 6 months and when I've rang the breast care nurses each time they insisted I go back to my GP to be referred. I finished treatment a year ago and am still seeing the oncologist and surgeon for checkups. I can't understand how my right breast can be in the system but my left keeps getting discharged and referred!!!!! What happened to patient centred care, my breasts are seen as separate entities. My breast care nurse have been no help from the start. When I met mine, initially I was impressed, but then I heard no more throughout the whole of my treatment. What's worse is they don't see how they are they think it's me being awkward. I was led to believe initially that they were just a phone all away.

Re: Tamoxifen

Hi Mousie,
Just to give you an idea, my case was quite straightforward. I was discharged by the oncologist after radiotherapy was completed, then referred back to the surgeon for follow up. I have a yearly mammo & appointment with the surgeon, plus access to the team if needed. Fortunately, I have not had to test this, as I’ve been fine overall.
Do question this, as there certainly seems to have been a communication problem at least.
Have you moved address at all, or have your contact details changed?
ann x

Re: Tamoxifen

WOW.. i am gobsmacked. I am in australian and i have a team that looks after me. I have 2 amazing breast care nurses that call me once a month (i was diagnosed march'17, finished rads in june '17). I have a surgeon, a medical oncologist and a radiation oncologist. Normal proceedure here is that you alternated between dr's every 3 months. I am an exception to the rule as i keep getting internal infections in the spaces where my tumor and lymphnodes where removed, am seeing them all on a monthly basis. I also have a survivorship nurse who keeps all my appointments in check so i don't have to worry about chasing doctors or remembering mammograms etc.

 I am so sorry to hear that you have been left to fend for yourself, that should never have happened. As mentioned in another post. I would call your cancer centre and speak to a breast care nurse and get the ball rolling. You shouldn't be doing this on your own xoxoxo

 

Re: Tamoxifen

I saw surgeon in first year after op, but not seen a breast care nurse . Had annual mammograms but nothing else.
Charys
Community Champion

Re: Tamoxifen

You've not had any follow up in the 5 years since you had treatment - no mammos ? No surgeon check-ups? Nothing ?

 

Oh MY WORD. I can't believe I'm reading this right. Ring your breast cancer nurse, who was responsible for you back then, and tell her what has happened.

Tamoxifen

Hi I am due to come off Tamoxifen on Feb 14th. I am concerned about the side effects. I have been on 20mg for 5 years. In that time I have had terrible migraines, hot flushes, brain fog, increased anxiety, no sex drive, dry skin, thinning hair, weight gain etc.
I have not had any contact from the hospital about seeing the breast care team in fact not seen anyone in 4 years. Feeling very anxious and feel I may have been forgottensomewhere in the system.