Hi, I had a lumpectomy and 12 nodes removed in Dec 2010. 6 were cancerous and so I started my chemo treatment in Feb 2011, 3 x FEC100, 3 x docetaxel, followed by 3 lots of radiotherapy and then 5 years of tamoxifen.
The Onc we saw prior to my first treatment was covering for the usual Onc who was out sick and he took a great deal of time to explain the treatment plan and said that it was a cure and ticked the “cure” box on the form.
We subsequently saw the usual Onc and what a shock. Unlike all the other people treating me (all of whom have been incredably wonderful) this person is patronising, dismissive of our concerns and quite rude. My second treatment did not go well, 4 attempts at the canula and pain when the epirubicin was injected which has left my arm swollen and tender to touch. When I tried to discuss my concerns about this and the possibility of tissue damage etc he was very negative and unsupportive and basically told me (amongst other things) that I only have a 75% chance of surviving 5 years.
I was devestated and he has totally distroyed my belief that I can overcome this and I really do not want to see him again. I just keep bursting into tears now and dread my next treatment on Thursday or cope with the prospect of having a PICC line fitted as I have a real dread of needles (wich apparently is not a phobia as he went to great pains to tell me).
Am I alone in feeling like this?
Hi DaisyGirl, no you are not alone, I have exactly the same problem with my onc, the first time I saw him he was really nice, laid back and took time to explain everything to me.
Everytime since then he has been rushed, rude, dismissive of almost everything I have said to him e.g. “well you have to have the treatment so just put up with the side effects”,
I am not suggesting for a moment it is you, because I know exactly what you mean,
Dont let this person put you on a downer, you are at a point where you need re-assurance, it doesnt sound as if you will get it from him, if I were you I would ask for another onc, I was o.k. because I just took it with a pinch of salt, I think my experience is that of a n overworked, stressed onc who just sees me as a name on a piece of paper and I feel as never looked at me as a person.
Rise above it girl you are better than that, you will get better, think positive, and dont let the little rat get to you.
Love Liz x
This sounds really bad and I have not heard of anyone who has been treated like this. All the doctors I have seen have been kind and caring. Can you ask to channge and see someone else?
As for the PICC line try not to worry too much about that. You do not feel it and it is so much easier with one. They give you the chemo from this and also take bloods so you dont have to worry aboout needles. I could not believe how easy it was to put one in, the nurse was very caring and when I had it removed it was even easier.
I really think you should see someone else who is kind and caring.
Anne
Thanks so much for your words of support they mean a great deal.
I had my pre-assessment for the next treatment today and also talked to the BC Counsellor, both she and the nurse were very supportive and I have the number for the Onc secretary so I can explain my situation and see if I can talk with a senior registrar about the questions I have. Some of these consultants should not be allowed anywhere near the patients!
Still not sure about the PICC line, but if I have another bad session on Thursday I think I may have to, just can’t bear the thought of having the line in me for 2 months and being further restricted in what I can do when I feel well enough to re-join the world!
Thanks again for taking the trouble to comment, it is good to know you are out there.
DaisyGirl
P.S. I wish they had a spell check on this!
Hi Daisy girl
So sorry you are having a rough time with your oncologist at a time when more than ever you need support, understanding and reasurance.
I was lucky and saw a wonderful oncologist even thoug he was not the one i was meant to be seeing. He was informative, kind and patient so much so he even said he would go to lunch with my husband and i so we could have more time to discuss things with him. The onco i was meant to be seeing the senior onco is another story. My Gp complained to his secretary about the lack of communication and length of time it was taking to get treatment started. He left a very snotty message on my answer machine, said his piece how he was right and put the phone down.Very professional - I just hope i don’t have to deal with him in the future. Melx
Hi all, my OH is an Onc as you may know, and still I had to ask specifically NOT to be trated by one possible Onc available who did the following - unbelievable thing. I was waiting for my post lumpectomy results in clinic, had waited an hour - totally sh==ting myself and terrified. This particular Onc came into waiting room, saw us, and we saw her, knowing that she would have been at the MDmeeting that discussed my results. She ran over to me, hugged me without permission and said how sorry she was. Bl++y woman - I nearly fainted cos I thought soemthing terrible had happend. It turns out not to be great news but not terrible - she just can’t handle herself…
so having listened to my OH for years being v concerned about how poor some of her colleagues are with patients I would say - some just are not as good as others however much training they get and if you not happy do not stick with one you don’t have rapport with unless they are the very last Onc in your area!!! And thank the godess for the good ones
bw Nicola
Daisygirl, I have a portacath rather than a PICC (due for a year’s Herceptin after chemo so PICC wouldn’t have done the trick) but I have read that quite a few people have ongoing problems with veins just collapsing and being sore for many months, so I suggest you give a PICC line serious consideration if you’ve already got sore veins. The couple of months of having it will be much less traumatic than the repeated assault on your veins during chemo, and there are lots of tips PICC ladies can give to help manage it.
As for your onc, sadly we do seem to be treated as slabs of meat or ticks on a piece of paper. If you really don’t want to see this person again you could speak to PALS (Patient Advisory Liaison Service I think it stands for) to get some guidance about how to change oncologist. You should not have to put up with being treated that way.
Best of luck, and I’m glad you’ve found the forums, they have been a godsend.
CM
x
Thanks so much to you all for your support, and how shocking it is to find my experience is not isolated!
I am going to have one more go with my veins tomorrow but if it is no better I think I will just have to be brave and opt for a PICC line. The nurse gave me some tips to follow to try to get my veins up before they start so fingers crossed but going to look a bit strange going to the hospital with a hot water bottle on my arm as it is going to be lovely and sunny in Margate tomorrow!
Thanks again to all you lovely ladies
DaisyGirl x
Hi DaisyGirl, I haven’t read the whole thread but saw you were considering a PICC line. I had one inserted after my first chemo - I’d already had problems with finding veins in hospital for my mastectomy and subsequently for blood tests. Even the first chemo was a struggle and the cannula had to be repositioned. The insertion was so straightforward that I didn’t feel a thing. I have to wear a sleeve (which you can buy from Boots) for showering but apart from that I’m not really aware of having it and my second chemo was 100% better because of no needles. It also means no needles for blood tests. I have to have Herceptin for a year so it will stay in for that - I’m sure by the end I’ll be glad to get rid of it, but at the moment I couldn’t recommend it enough. Initially you get a slight ache, but really minor, and that goes off after a few days. Please do consider it if you are having trouble with veins. The only drawback is if you are a keen swimmer because it does rule out swimming, but for me the lack of needles totally outweighed the fact that I couldn’t swim. I would choose it again if I had to make the decision twice. I hope this helps.
Hi CaptinHaddock
Thanks for your message, it is good to hear such positive things about PICC lines as I have been very apprehensive about the prospect.
The good news is that my chemo yesterday went very well and so for the moment I am not going to go ahead with it but if it does look like I do need to then at least I will be less anxious about it.
For anyone who is interested the tips the nurses gave me were:
drink lots of fluids before the appointment (even if you have to go to the loo all the time)
put a hot water bottle on the arm to keep it really warm
they also put my arm in hot water before the canula was fitted and all this meant that it went in like a dream
they kept the heat pad on for the whole of the treatment and I have had no further pain in my arm.
For the tenederness I still have from the last treatment they recommended 15 mins ice pack followed by 15 mins hot water bottle as offten as I can and this too is eleviating the symptoms.
Thanks again
DaisyGirl
Another hint, DaisyGirl, - I kept my hand in a glove on the way to the hospital and all the time up to the cannula to make sure hand was as warm as possible - like you I found that keeping the veins warm and avoiding dehydration were the key points that helped.
Fran
Really good news DaisyGirl - whilst it’s been brilliant for me it definitely isn’t worth having any intervention unless it’s actually needed. Good luck with others, hopefully they’ll go just as smoothely.