SO angry with mums oncologist
SO angry with mums oncologist Hi All,
Sorry about the rant in advance but has anyone else had this.
Went with mum today to see her oncologist to talk about chemo (Glad I went as I wanted to bop the Dr.). We waited 1hr 10mins to see her with the worlds biggest winger sitting next to us (Great start).
Then when we got to see the Dr she started with “Ooo Your a very odd case having 3 different kinds of cancers (Grades 1-3 between both of her breasts). Then said chemo is to reduce risk of cancer coming back, did you know if it comes back its incurable” (Hmm, so she’s going for the optimistic route already) then proceeded to tell mum everything negative, make light of mums questions like she was a child, be so unbelivably vague about the info she was giving as we should know what what going on and then proceeded to tell me I am wasting my money buying her vitamin C to boost her immune system and buying varying superfoods to help her body fight (Oh well my money!!).
I interupted and said why are you so negative about all of this and she said she was’nt being - God help if she was. I ended up apologising (Sarcastically for caring as she laughed off my questions). We then got dumped in the chemo suite to meet the nurses there and the poor women there got my tears and frustrations and mums blatant nerves. How can an oncologist be so god damn heartless and vague - We all went in feeling so positive and came out so confused!
We have since spoke to mums BC nurse who was fab and helped reassure us but we know no more about mums chemo than we did this morning - I can see me having an anger management problem if this carries on as I can’t just watch my mum being fobbed off, laughed at and confused - Arrrggghh!!!Rant over - Sorry!!!
I had a particularly awful onc [who was not an onc but a GP with special interests- not who we expect to see at br ca clinic].
I moaned like mad at GP, district nurse and the Macmillan Nurse who advised me to tell receptionist at next appt that I would not see this chap. It worked like a charm. After a bit the other oncs got over the suspicion that I was a menace and, although I have not a lot of good to say about our oncs, am getting much better treatment. Advise your Mum to refuse to see this wretched woman again.
Another poster to this site wrote that you can demand to be referred to a centre of excellence, where treatment is prescribed that can be carried out at your local hospital. A very good move if your onc dept turns out to be pants.
There are loadsa different chemos now and any recurrence can be treated with a different one. It’s true that if your Mum’s cancer comes back it is incurable but that doesn’t mean your Mum won’t have years of life ahead of her. It just means that from time to time she’ll need more treatment. My Mac Nurse now visits cancer patients who are in old peoples’ homes. She says cancer is now regarded as a chronic illness rather than a terminal one,as it used to be.
Don’t lose heart and keep batting for your Mum. Best wishes, dilly
Arrogant,patronising Oncs!! Hi - You have every right to feel as you do.I too was assigned a difficult Onc (by the bc nurse would you believe, who suggested to my surgeon I see Dr. K. as he was supposedly very bright and could deal with my “empirical” problems.)
At our first consultation I asked him why I was not told I had DCIS (cribriform and comedo) as well as an invasive tumour. He said DCIS was not cancer, I disagreed and told the prat that I studied latin at school and DCIS meant Ductal Cancer In Situ! I then asked him if he had treated, concurrently, a patient with bc and Crohn’s and he patronisingly said: “No, but I have treated someone with psoriasis and bc” - well, we are talking apples and apples here. He told me I had to stop my methotrexate chemo for Crohn’s (only thing keeping me stable) otherwise he would not lety me have the FEC chemo and then said: “If you take both you will die of septicaemia”. Really good bedside manner. I asked how he would treat a flare of Crohn’s when on FEC and he said"we will cross that bridge when we come to it.".
Not good enough for me - I stormed out in tears, with my dreadfully husband trailing behind. I rang my gastro and he said he couldn’t intervene as bc was life threatening, Crohn’s not - how come a friend of mine has just recently died of Crohn’s then?
The Onc was no better the next time I saw, I ended up in tears again, and I almost didn’t have the chemo as I couldn’t face this guy again and get so upset. The next time I went for chemo I asked the receptionist if I could see another Onc, she didn’t ask any questions, just asked me to wait for 10 mins. She came back and said “Dr. H will see you in a few moments.” I couldn’t believe it was so easy.
The new Onc was a female GP who worked one morning a week in the Oncology Suite and she was so different - caring, intelligent and listened to my worries. She sorted me out with dexamethasone daily during the 4 months’ chemo and prescribed some special juice, as I couldn’t eat any solids without severe diarrhoea. The hospital provided it foc. I was so grateful to her.
So - if I were you, I would ask the Onc receptionist, or one of the nurses if your mother can see another Onc - it will make all the difference in the world, not only to her, but to you, who has to be carer.
I did think about making a formal complaint, but quite honestly I was too ill to even contemplate it and I didn’t want to get a reputation as a trouble-maker, but with hindsight, wish I had done.
Take care, and hope your Mum gets another Onc.
Regards, Liz.
Thank you again!! Liz, Dilly,
Thank you so much for your replies - Atleast we know we weren’t just being over touchy and that in general oncologists are pretty rubbish at bedside manner and being useful.
Mum didn’t sleep well last night as it was playing on her mind and said this morning wished i’d said"how would you like to be sitting here hearing the ‘INFO’ your giving me" but told her to write it off as a bad day and face the future as chemo nurses were fab when we met and BC nurse rang today to see how she was today. I think we will say we don’t want to see her again - Yes mum was worried about being seen as a trouble maker but she is so god damn placid it aggrevates me - Its me who’s more vocal(not when its me but when its my parents i can’t just sit there - They did it for me for long enough afterall!).
And will tell her about the nurses saying cancer can be chronic as I know that has played on her mind alot as my sister and I aren’t married or any children (Her dream is for lots of grandchildren - No pressure then!!).
Thank you again ladies for listening andfeeding back - Just goes to show everyone needs to stick together.
Best wishes to you all and happy Easter!
Just don’t give up! Thank you for your reply and glad my and Dilly’s responses helped.
Your Mum’s Oncologist was definitely out of order in telling your Mum a recurrence is incurable - as Dilly said, you can live a long time with bc and even metastases. Who knows what is in the pipeline with new drugs and research? Your mother could live until she is 95, God willing.
When I got Crohn’s at 25 yrs old, no-one, least of all me, had ever heard of this disease some 37 yrs ago. My then gastro said I would be dead in 5 years as I suffered severe malnutrition, going down to some 5 stones, and I didn’t have anorexia, never heard of it, and ate well, just couldn’t absorb food becase my intestines were ulcerated and had deep crypt abscesses.
I think my experience with Crohn’s gave me an incredible desire to overcome breast cancer, which I have done for the past 4 years, but I am not complacent.
You sound a wonderful, caring daughter, and please give your Mum a hug from me and tell her absolutely, she will come through this - scientifically this may not be true, but none of us know the power of the mind. I am not religious at all, but I do believe that self belief can overcome a lot of health problems.
Take care,
Liz.
Not really connected to this post but I thought I would share with you the bedside manner of an onc I saw this week. I have had 14 of 18 rads and apparently an onc always sees you at some time during rads. This was the first time I have seen this particular onc. My usual one is fantastic.
The first thing he said when he walked in was “well Mrs xxxxx, how have your breasts been?” I was rather taken aback by this and the consultation deteriorated after that.
Good luck to you all dealing with family with cancer. My husband also has cancer so I suppose I am eligible to post in this section.
Hugs to you all
Lesley
xx
Life just happens, someone said… Hi Lesley,
I think I saw an Onc only once during my 24 rads - he had a peek at my right boob, didn’t touch it (did he think bc was contagious?) asked if I had any problems - no! - and that was it. I think the consultation was all of 2 minutes. And, this was at a Breast Care Centre of Excellence. Sometimes I have just wanted to despair and give up. But, we bc patients are made of strong stuff - and I believe we just don’t understand the power of the mind, when faced with a potentially terminal situation.
Mind you, when I was having chemo for some 4 months, a different Onc never even had me take my top off, but she was good in sorting out my meds with a concurrent problem with Crohn’s.
I think today’s doctors should have more guidance/tuition, call it what you will, in the interpersonal relationship with patients who have a life threatening disease. I am not religious, but I do believe that my positive attitude through 37 yrs of Crohn’s, has helped me stay alive.
Newer meds, other than the dreadful steroids, have come along now to keep me stable, but when I was 24 yrs old, and dx with Crohn’s, I was told I would not live 5 years. I am now a young 62 yrs. Just goes to show the medics are not always right, and I don’t feel the younger Consultants coming along now have the old “God” like attitude.
Take care,
Liz.