Newbie & lost

Hi Skj01  welcome to the group, but I am so sorry you have had to join us here. Although they truly are a great bunch of people here in the incurables, this really isn’t a place any one wants to join. I hope you will find support by chatting to us, we are the only people you will ever meet that really understand how you are feeling.

Your oncologist sounds like she needs some training on bed side manner !! I know it’s their job, and we are only one of hundreds of patients they see, but where is their empathy ? And why couldn’t you see your scan results ? They are your scans of your body! Not hers! Makes my blood boil when I hear stories like yours. This is the most traumatic time of your life, and you deserve to be treated with some dignity and positivity, and not seen by a negative Nora with the empathy of a bumble bee! Sorry rant over. Have you been assigned a nurse yet, I would talk to her and tell her you really were not happy with the appointment and you really would like to see your scans, maybe by an oncologist who is able to explain them to you. 

I haven’t had chemo myself, so I cannot help with that. What I do know is chemo is not always as harsh as it seems, and they do keep a very close eye on you. Again speak to your nurse about your concerns. Don’t be afraid to speak up and talk about your worries. Not everyone is like your oncologist, there are some more sympathetic people in the hospital. 

Hi Chelle

Thanks for the support. You certainly made me laugh  In the space of 5 weeks I've seen three different doctors and three different nurses. I have a more positive view of the nurses. I've had no consistency, at least they try and the questions they can. I will ask to again about seeing the scans.

I think because I didn't fall apart as I was told and asked a lot of questions it got the oncologist's back up. Oh well! I'm definitely thinking about asking to change oncologist. 

I did appreciate your rant You were definitely a rainbow in my cloud today. Thanks

That should say ' answer the questions'

Hi Skj01, and a warm welcome from me, to our friendly little group, though I'm so sorry you have to be here, and the awful attitude of the oncologist who's supposed to care for you, it's like your feelings don't matter to some of them, but thankfully not all, and there are many who empathise, and I can relate to getting mixed signals, it does erode your trust, which is so important 

And very well done telling the doctors what you feel about the way you've been treated, I'm in a similar position to you, different cancers, but with serious heart issues and other co-morbidities, quite a few of each, and my oncologist and cardiologist have been working together to make chemotherapy an option, Skj01 I have 8 heart issues and at least 12 co-morbidities and chemotherapy will be an option, so please try to be positive, today's understanding of chemo treatment and how to minimise side effects is improving all the time, I hope some of the lovely people on the forum will get in touch and share their experiences, there are many wonderful stories to give us all hope.

Eddie xx 

Hi Skj01, A warm welcome to this terrific supportive Group as I’m sure you will discover yourself. I think it is appalling the oncologist saying she was not a radiologist because all she has to do is look at the radiologist’s report and you have every right to see your scan and ask questions, that is the only way we find out what is going on. I write any questions down in a notebook (as I think of them) then ask them when I go to the appointment. Any aptm not just oncology. Like Chelle it makes me mad when I read how some doctors treat patients. I loved the phrase “negative Nora with the empathy of a bumble bee” good one Chelle!! Thankfully there are lots of really great oncologists. As you haven’t yet written on your Profile page, I don’t know what area you are in or what hospital you attend. If you are in Scotland there are numerous competent oncologists. I also hope you have family and friends to support you threw this.

I haven’t had chemo as it or radiotherapy don’t work for my kind of cancer but if I were you, I would be letting them know how I felt and any concerns I had so the pros & cons could be listed and an informed decision made. You have every right to ask for a second opinion if you can’t trust your oncologist and ask to see someone else on a permanent basis. Good luck, we shouldn’t have to but we really do have to fight our own corner so we get the correct Plan of Treatment. Please keep us posted. Good luck!

Hi Eddie

Thank you very much for your comments and sharing your situation and yes it does give me hope. Like you, heart is not my only condition, but I'm hoping with modern medicine I can navigate this successfully. 

Skj

Hi anndanv

Thank you for your comments. I have already stated a diary and log all my questions at the back of it.

I'm a IT project manager by trade, so I'm not backward in coming forward. it's natural for me to ask the difficult questions and put people on the spot. I have an innate desire to understand the landscape of a situation and to find a solution.

To be honest I don't care what the doctor's issues are. I just need it to be about me, me, me!

Thanks again.

Skj

I am sorry you find yourself here, and also that you didn’t have a great experience with the oncologist. I also have metastatic breast cancer, in my case TNBC with spread to the liver, no lymph node involvement. I have been living with stage 4 cancer since 2022.  I have had multiple scans on the way. I do find that oncology rely on the reports provided by the radiographers who review the scans in detail. Whilst I have been shown my scans from time to time, it’s clear the oncologist isn’t an expert in reading the scan. What I am confident of is the careful process the radiographers go through reviewing a new scan and comparing it to predecessors. I therefore think it’s highly likely they will be able to tell whether treatment is having an effect. 

it’s definitely worth getting another appointment to go through your health concerns in relation to the proposed treatment. I have not had docetaxel but have had periods of treatment with other taxanes - Paclitaxel and NAB-Paclitaxel. Ultimately they were bearable for me. It is of course your choice whether to accept treatment or not but your treatment response may well be better than you think if you do find you can tolerate treatment. 

Oh Skj01 , of course you feel lost and scared having been treated like that!!! My metastatic oncology breast clinical specialist nurse(s) - there's 3 and they work as a team, no single case holders- have been sooooo much better at explaining my treatment to me, addressing my concerns, treating me like a human. I had a disastrous appt with the oncologist. I was diagnosed Oct/Nov 2024 with IDC but hormone positive,  HER2-. Then found out it was in my bones already, and possibly a lung. It's a frightening time, you need support not a battle with a power tripping doctor. Do you have a maggies centre near you? Their support people are trained nurses, radiographers etc and have helped go over things with me too. Really hope you fund someone better in your team.

Lex - xx