72.7K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

What do you think about the quality/quantity of info on dx

13 REPLIES 13
cherub
Member

Re: What do you think about the quality/quantity of info on dx

The Consultant Surgeon I had was quite straightforward and to the point. I know a lot of ladies who have seen him don't like him because he can come across as a bit rude, but as I'm quite a direct person myself I was OK with this. My BCN told me later he found me easy to deal with as I was as direct as he is!

I found all of the Oncologists I dealt with fantastic; I would go in there with a list of questions and the were happy to address all of them. My OH attended all of my oncology appointments and chemo sessions, so if I forgot anything he would ask. When I was discharged they thanked us for being really good communicators. We are both quite calm people who don't like being fussed over.

Guest user
Not applicable

Re: What do you think about the quality/quantity of info on dx

Some of you have great consultants.
My first brush with bc was when I was told I needed a biopsy after I had been recalled after my first mammogram ever. I immediately feared the worst and started to get tearful. The nurse gave me a leaflet and left me crying on my own whilst I waited for the biopsy. My OH was left in the waiting roon for 2 hours, not knowing what was going on. He was not allowed in because there were women in various stages of undress in the screening area. Whilst I was having the biopsy I was asked if I was going back to work later that day!!!

Returning the next week for my results, I was told I needed a mx before I had even sat down in the examination room. My surgeon measured me with callipers and consulted implant catalogues whilst I was crying me eyes out. Cold clinical approach at all times.

I had to resort to the internet for all my information as I had been too busy crying when he told me what the mammogram revealed -DCIS.

After op, my examinations have been brief and impersonal, with me trying to be assertive ( and failing!)whilst half naked in front of him and several strangers. I feel like an object not a human being.It has been the worst experience of my life.

But I am so pleased that others have more compassionate and humane doctors and nurses involved in their care. I have asked for a copy of my path report as I know I am legally entitled to it so that I can see in black and white what was found. To date: no path report has been sent. I will have to make a nuisance of myself, when I'm not emotionally up to doing it, to get a copy of that report. I will get it, come hell or high water!!!
Annys xx

Flora29
Member

Re: What do you think about the quality/quantity of info on dx

I was told by the radiologist doing the mammogram and ultrasound at my first appointment, but mainly because I was asking questions and wanted to see the pictures on the screen. He pointed out the calcifcations which generally indicate DCIS, and the larger area that was the lump (tumour) I could feel. So when I went back to see the consultant, he and the BCN basically confirmed that it was 95% certain it was cancer and we'd get the formal results of the biopsy a week later. He pushed the box of tissues towards me, expecting me to cry immediately, but I didn't until the BCN took us next door and gave me a leaflet to take home.

By the following week, I had done lots of research on the internet and went to the biopsy results armed with a whole list of questions and a notebook and took copious notes. They chuckled at me! MX and node clearance was one week later, so I only had two weeks to take it all in (and I was at a very early stage of pregnancy at the time too, which sadly didn't continue).

I still make lists of questions and take notes, as it is so easy to forget to ask, or forget exactly what the answer was.

I tend to research each step of treatment at a time, not all at once, so I don't get overwhelmed, but I am always learning new things from everyone here.

topsymo
Member

Re: What do you think about the quality/quantity of info on dx

Having been re-called after a routine mammogram I had already assumed that it was likely that I had cancer and the doctor doing the ultrasound etc confirmed this when I asked- before I went in to see the consultant. I was then told that I wouldn't need a mx and probably only rads after WLE and SNB .

The really hard part for me was the results appointment 2 weeks after surgery. I had to wait in a very busy clinic for over 2 hours - then to be told that the cancer was Grade 3 stage 3 and I would need further surgery and chemo etc. (My husband and a nurse were also there.)
The surgeon was brilliant & I guess part of the reason for the long wait I had had was because he had taken plenty of time with his other patients as well. Anyway- I was in a real state - with anger & distress but he took it all on the chin and was SO kind and empathetic; he apologised repeatedly for the long wait I had had and for not being able to give me better news.
But that wait has stayed in my memory as one of the very worst times of the whole grotty BC experience.

Guest user
Not applicable

Re: What do you think about the quality/quantity of info on dx

Hiya Everton Babe

I went for biopsy results and was on my own in the room as I didn't need anyone there as there was no way I would have cancer. The consultant checked out my biopsy wound and then another woman walked in and I knew then!! she was actually my BCN. They told me verbally and gave me the leaflets to read. We went into another office and I called my sister in but still very hard to remember what was said. My BCN visited me at home 2 days later were she then went through it all again with my family present. I would have still liked to have the information written down so I could go over it at a later date because I think it takes a long time to get it straight and to be honest I still only found out some of my path results when I was having my herceptin and the nurse left my file next to me and I picked it up and read it. She said I was not allowed to read but I said it was about me and I had a right to know so I did continue to read.

Guest user
Not applicable

Re: What do you think about the quality/quantity of info on dx

I can't stand that patronising approach. all sorts of women get breast cancer, nice ones, nasty ones, mildly unpleasant ones. And men sometimes get it too.

I was anything but nice

Mole

Guest user
Not applicable

Re: What do you think about the quality/quantity of info on dx

Hi Everton babe
I don't know how far along you are with diagnosis and treatment but it's never too late to ask for any written reports you want. Phone your BCN and she will be able to send/explain the info. I think it does help to have it available so you can absorb it bit by bit. I've had a mixture of just verbal (with OH) and written so am happy. All of this along with the forum is enough.
Cheers
Margaret

Everton_babe
Member

Re: What do you think about the quality/quantity of info on dx

Hi everybody
Great to hear from you-I do love this place for the mutual support and honest veiws!!
Seems there are huge variations in the quality of info-I dont feel so stupid now about my own lack of knowledge!!
I have found it hard to get my head around everything thats happened and would love to have a 'report-style' summary of the whole damn cancer journey which I could read and digest when Im more ready to take it in and question it.
x

truffle_shuff
Member

Re: What do you think about the quality/quantity of info on dx

I got my results same day as scan and mammo.............the consultant came in to the exam room after the tests along with the BCn, she did not say anything at first just sat beside me and held my hand............i started to cry as i knew what was about to be said and she just said , yes its a cancer in a very calming voice.

I then had several meetings with the breast care nurses up until the op.

I think i was given the results in a very sensitive manner.

xx

Guest user
Not applicable

Re: What do you think about the quality/quantity of info on dx

Hi, I found out by looking on the computer at work as I work in a hospital. Not the best way to find out!!! Silly me.
The consultant saw me the same day and he was brilliant. As I allready knew that I had cancer he elaborated on my diagnosis and said that I would need to speak to the bcn and she would answer any other questions I had.
My bcn is nice enough, but I don't feel I got much support unless I specifically asked for it.
Debbie. xx

horace
Member

Re: What do you think about the quality/quantity of info on dx

I was told by the consultant with the bcn and my husband there.He began by telling me the right breast which had shown up original anomaly was fine but there was a 'subtle' cancer in the left side.He then examined me again and gave me a date for WLE and node sampling.He left us with bcn who gave us leaflets and an 'anytime' phone number.Post op I was given all results by consultant with bcn and oh there.That was the worst day of my life so far!He wrote the results down for me-triple neg,2cm,grade2 IDC clear margins and no vascular invasion.He suggested chemo and gave me an appt with oncologist-the rest,as they say,is history!
No complaints.
Valxx

Guest user
Not applicable

Re: What do you think about the quality/quantity of info on dx

sorry forgot, the consultant at the follow-up appointment gave me everything that was going to happen and why in writing.

Guest user
Not applicable

Re: What do you think about the quality/quantity of info on dx

I was told at the hospitsl by the consultant. In the presence of the BCN & my husband. We had gone there for the result of a biopsy take the week earlier. The consultant asked by husband to sit on the chair next to the drs couch i was laying on. He then sat on the edge of the couch took hold of my hand and said something like " I am sorry there is no easy way to say this, the results have shown you have breast cancer. I am sorry it always happens to the nicest ladies. I will say no more now, but ask Katrina (the BCN) to speak you both on Frisay (this was on Tuesday). She will go into greater detail when you have both had chance to take the news in. You can bring anyone you want to this meeting to help you with taking this in". He then left the room, the nurse made the appointment and she left. They allowed us a lot of time on our own to hug/ cry etc before we left. The meeting with the nurse was us and my 2 grown-up daughters. She spend a lot of time answering all our questions and more. I had a follow-up meeting with the consultant the following Tuesday for more technical details. I have found the consultants and nurse brilliant and could not fault them at any point. I had a full mx with full node clearance. I finished chemo 5 beginning of Feb, I am in the middle of rads and have had 2 doses of herceptin. I had portacath put in mid Dec.

Everton_babe
Member

What do you think about the quality/quantity of info on dx

Hi everybody,
Im really interested in how you got your info at diagnosis. Was it verbal, in writing or, or as Ive heard, taped and given to you.Given the catastrophic nature of the situation, I'm really amazed at the variety of means that we were told. I for one, still feel there is so much I dont know about my own situation-its all so foreign and scary that I feel some kind of written info on your personal situation would have helped. Of course I got the helpful leaflets etc, but my own info, such as path report, treatment plan etc could form part of an important 'journey' log.
What do you think?