From my point of view, having checks on consultants. the one I had was foreign, European I think and it wasn't what was said but the way it was said. she had a lousy manner and her attitude at examination was awful. No one likes to be told bad news but some need training to do it in a more compassionate but understandable way. Mine kept muttering on about a lesion but never mentioned cancer so I had no idea it was cancer until the breast nurse took over. Have been ok with the rest of my care. After care or a follow up call would be nice too. once I finished rads then that was it - nothing! I have registered for the Breast Cancer Now Moving Forward course and Maggie's does one too. Don't think these are promoted well enough x
Thank you so much. I was told hardly anything early on at Breast Clinic One Stop place, on the grounds that when they had told patients, people had complained. I was told I had "precancerous cells" which I imagined wasn't a big deal at all and nothing to worry about. They even asked me what I thought I had ! Followed up by being told once referred to Surgeon I needed a mastectomy as cancer everywhere in one breast and 25% of the other one removed. One hell of a difference.
My experience would have been better if I had been put in touch with other patients in my local area I could have met up with had a walk and coffee and we would be on the journey together. X
More access to my medical oncology consultant. To reach him, I have to go via a nurse, but the nurses are not always available, there is no transparency regarding what days they work and when they are on leave, and I am left wondering why no one is coming back to me when I leave messages. This led, on one occasion, to a delay with a scan, as an example, but there is also a mental cost.
Hospital staff need to follow guidelines more closely, especially when it comes to hygiene and covid-19 rules. In the past I had to physically shy away from being touched by un-gloved hands, I had to stop hospital personnel from crowding a lift, and so on.
Lastly, and very importantly, there has to be better communication between the various departments, such as medical oncology and the chemo area, medical oncology and pathology, so that a patient is not left having to try and bring everyone on the same page for the sake of coordination.
Absolutely. Unless we see our notes, how can we tell whether the messages they say they will pass on ever actually do ? My breast cancer Nurse actually denied even taking my drains out when one of the Surgeons asked when they came out when I had the haematoma, necessitating a second op to drain it. She said she was off that day !
I have been very fortunate with my cancer care. I am under Kings College Hospital. All appointments are followed up by letters. The Cancer Nurse albeit very busy is excellent and keeps in touch and has good advice to give. The Consultants are concerned about any problems that I have and are pleasant to deal with. In fact all the staff I have had dealings with have been conscientious and courteous.
Hi I think when I had my lumpectomy I would have liked the breast care nurse to come and see me, I had no contact information and the nurse who discharged me didn’t really have any information to give.
I also think that a little bit of help getting dressed would have been nice other than trying to struggle. I would have also liked my wound to be checked after a week as mine wasn’t checked for 4 weeks as I didn’t have a dressing just glue.
I would have also liked my results given to me by a doctor who understood what everything meant, instead of a nurse who couldn’t really answer any of my questions.
I think it would also be helpful to everyone diagnosed if the tests were all the same, in that after the initial diagnosis we all get Breast MRI, CT scan and bone scan as standard as some hospitals seem to do it and others don’t, apart from the mammogram, ultrasound and biopsy I had nothing and so have now had an MRI after my lumpectomy as was diagnosed with ductal and it turned out to be lobular, so I was very lucky the margins were clear. I just think we’re dealing with enough so we don’t really want the constant surprises.
Tired Minion, I agree with you. I had a very similar experience at my first appointment with the oncology consultant...she was also European, her manner very brusque, abrupt and patronising. I was so upset after seeing her I immediately called my BCN. It was a registrar who saw me at my next oncology appointment to discuss radiotherapy. I find any after care/follow-up call also lacking. There’s been no contact since I finished radiotherapy with a ten week interval until next oncology appointment. Unfortunately there’s no Maggies at my hospital however there is a Breast Friends support group but the weekly meetings haven’t started back up yet due to restrictions.
I think that bood tests should be done when on AI's and tamoxifen as they are in the US. I had a retinal detachment and bleed after 3 months, and due to covid lockdown 1 and Moorfields A&E closing stopped letrozole for 6 weeks after it to avoid a potential retinal tear and trip to Moorfields for eye surgery. I restarted and developed an ulcer in my eye which only resolved in July 2020 when I stopped for a few weeks. I didn't see my oncologist until August when I started Exemestane with no support or checks until November when I ended up in A&E with blood pressure 192/93 due to Exemestane and the Zoladronic acid infusion 2 weeks earlier. I was told it was medically induced so stopped Exemestane and the spinning room stopped and blood pressure dropped. I then caught covid but restarted letrozole when recovered, on alternate days. The only blood tests I've had in almost 2 years are when in A&E with the high blood pressure and ambulanced to hospital with covid, despite being on these strong drugs most of the time, and I think that cancer patients out of active hospital treatment are mostly left to their own initiative. In February this year I had a phone call appointment with my oncologist where I said I was taking letrozole again, and she said I'd have my next phone appointment... in December!
“Remember to look up at the stars and not down at your feet. Stephen Hawking,
