Just a rant/offloading - no need to read or reply if you don't want to!

Hi MooCoo, Hi, I've just seen this thread for the first time, can you believe and it's been going on for ages!

Anyway, I agree with what's been said about being able to trust your Consultant and your Team, it is imperative! Lots of people before you have changed their consultant or asked for a second opinion.  Not long after my diagnosis, I woke up one morning and couldn't see properly, it was as if a net curtain had been drawn in front of my eyes. I attended the Eye Clinic's emergency clinic and was given an appointment for the Head of Dept, a Professor that everyone was frightened to talk to it seemed to me. Long story short, I attended his clinic twice a week for the next two weeks but he never actually spoke to me, his Intern examined me, left the room, spoke to him and he came back telling me what they were going to do now but nothing was working, I was being treated to Inflammation of the Eye. I asked to speak to him in person and was refused. I was going through the screening process for a Trial drug which included Opthalmology where I told the Consultant how worried I was. He sent me for an eye scan that showed Malignant Melanoma had spread to my eye. He did say it was very unusual and would be impossible to diagnose without a scan. I made a Formal complaint against the Prof and refused to see him when he asked me for a meeting. Two months later, he retired!

Ive told you this story because we are in charge of our treatment as well as the consultants, doctors etc. It's your life not theirs so please please do "something"! You need to know exactly what's wrong with you and what treatment they recommend and why! This is not an easy position to be in but you need to be assertive, it could make such a difference not only to how you feel but what treatment you have. If you have a good GP explain the situation to him. He could arrange a second opinion.

In the meantime, I hope the Denosumad works some magic for you, you deserve a break! Good luck.

Definitely tell him how you feel and that you need the pain sorted sometimes we have to stick up for ourselves x

So I'm back with another rant about this oncology team. I got my CT scan results a few weeks ago and they said no real change but the bone lesions (which they STILL can't tell me where they are!) are marginally bigger. Given previous mistakes and miscommunications, I now request all documents and check for myself. Glad I did, because the latest CT report says NO liver metastases which is GREAT but I specifically asked her if the liver metastases had stayed the same, and she said yes.

So since I've started on Denosumab and had the covid jab, I've had an increasing cough and  breathlessness. Things came to a head last week when I rolled over in bed and couldn't get my breath back from that for a good ten minutes. I cancelled the due denusomab - didn't think I could walk downstairs, never mind get to the hospital. I couldn't even talk - it was one word - gasp gasp - one word - gasp gasp.....

So the oncologist rings, listens to my complaint about breathing and tells me to go to A&E urgently - that they will be expecting me. I get there at 3pm and go through the triage nurse tent. She tells me she's triaged me as the most severe - red - and go straight in. 

At 8pm - yes, five hours later - they take some blood and do a heart trace and send me back to the waiting room.

At 11pm - eight hours after arrival - I finally get to see the doctor. She tells me that white blood cells and neutrophils are up and there is a rattle/squeak from my lungs and I may be looking at antibiotics and steroids. She goes off to consult with her consultant, then comes running back shrieking about blood clots on my lungs and heart. My d dimer marker (protein that can appear when your body is breaking down clots)  was high, apparently. So - injections into the stomach and I'm admitted.

CT scan next day shows no clots - however it does show "lesions" in my lungs - and three hours later, I'm allowed to go home. This was on Thursday. I struggled all weekend and then on Monday, my GP rang to say she'd had the discharge form etc. She listened to me breathing on the phone and - given the information about the white blood cells and neutrophils - decides to prescribe antibiotics and Carbocistine (which makes mucus thinner and easier to cough up). Within two doses, I am coughing up lots of mucus, (like 100ml a day)  I am breathing a lot better and happily walking up and down stairs again. My home oximeter stops saying 80-82% and starts saying 93-94% (95 being the ideal but 93 being average for someone with copd.) Everything continues to improve.

So the oncologist rings on Wednesday and instantly starts insisting I have chemotherapy for my lungs. Never mind that the antibiotics are working and that I can actually feel my lung capacity has improved - to her, chemo is the only answer. There has been no biopsy. They are going from symptoms and guesswork - symptoms that have improved with each antibiotic dose. She tries to push Denusomab for that very day - which I decline. Denusomab can cause these symptoms, too. 

I ask her about the d dimer marker and whether I should be continuing the blood clot injections and she said no - there was no clot and d dimer markers can appear as result of an infection. I ask if I should continue the Tamoxifen (since on every previous phone call, they have been most insistent that I continue it) and she said no, it wasn't working. So what the eff made the metastases disappear from my liver then? Voodoo? I ignored her and  continue to take it. 

These bits on my lungs could well be inflammatory nodules (which appear during infections, amongst other things) or COPD damage - there could be any one of a dozen reasons for these and I feel I am  being pushed/bullied into chemotherapy - for a chest infection - on her guesswork. I have already had chemo twice and can apparently have one more "go" at it during my lifetime. I do not want to waste my last chance chemo on her guesswork. 

I have been researching like mad and have a lot of potential questions for her but I am not hopeful of getting answers and m so frustrated and angry with it all. I am convinced that there is no need for chemo right now - my symptoms have improved by 80% with good old antibiotics  - as we all know, cancer doesn't get cured by antibiotics so the reasonable assumption is that my symptoms were caused by an infection.  Rant over! (at least until Wednesday after I've seen her!)

It's likely that I will be attempting to change oncologists after this latest debacle. Any ideas/tips on how to go about this?

Wow,

I understand how you must be feeling. It is so frustrating to have to fight for yourself especially when you are feeling ill at the time.

you have done all the right things and seem to have a sensible GP who prescibed  the right thing for you.

good you have a pulse oximeter  and can monitor your saturations.

I have just refused chemotherapy after 3 times of asking by my oncologist and he said he won’t ask me any more. He is now pushing RT which I also have refused.

we have the right to make our own informed decisions.

I suggest you contact the PALS dept  at your hospital and ask them how you change doctors . Or you could be brave and tell your present oncologist  you would like to have a second opinion from  one of his colleagues and take it from there.

Good luck xxx

Thanks for your reply. I'm not against further chemo if warranted - I  just don't believe it's necessary for what was evidently a chest infection.  The antibiotics and Carbocysteine have gotten rid of 95% of the symptoms with just a little breathlessness on exertion - but I have copd and I - stupidly -  smoke so that's explainable. .  It feels a little like amputating a leg for an ingrowing toenail! There is absolutely  no evidence that it is needed other than consolidation on the CT scan and, seeing as I had a chest infection which causes consolidation, I really feel this is very much the wrong route, especially given the countless previous mistakes and miscommunications. 

The PALS is a good idea - thank you. I intend to prepare my questions (and write them down this time so I don't forget any!) and if I'm not happy then I will go the PALS route. 

Well, appointment today and fortunately it was the oncologist himself and not his registrar. He agreed with me lung met symptoms disappearing with nothing more than antibiotics was probably not lung mets in the first place. The "markers" seen on the emergency CT could well have been infection. 

He also confirmed I was to stay on the Tamoxifen because it is improving everything - so glad I listened to my instincts and ignored the dr last week when she told me to stop it. 

That is some result MooCoo. Well done for staying the course.

excellent news, I was told a couple of times I had mets in the area where my kidney was, they they stopped talking about them and I asked why and they said it was actually scar tissue from where the kidney was removed  

It is your life, your future don't let anyone take it away from your hands. No one else knows what's going on inside your body and more importantly in your soul. My Lord , Jesus Christ stands by me, He is my Hope, my Saviour.  I am sure He is going to help you too 

You seem very wise and making the right decisions xx