Conflicting advice from my oncologist and my consultant.

hi

There does appear to be some conflicting information here, doesn't there

Have they told you that you are curable or incurable but treatable ?????

I have a feeling that technically the incurable diagnosis comes when the breast cancer has spread outside the breast and in this instance I'm not sure it actually has, if they can operate and remove the skin, I had a skin sparing mastectomy, then the cancer will be removed and I'm not sure I'd have even waited to see if I could achieve any shrinkage, if I'm honest. 

If you're trying to preserve the breast then attempt to shrink the tumour but if you're going to remove it anyway, why wait ?

IF however they consider you to be a secondary or advanced or metastatic case why operate at all?  I know some hospitals or surgeons won't operate in cases like this but I'm not a surgeon or doctor so I don't really know all the ins and outs and why's.

If you're still aiming for a cure then time is going to be important and the sooner you get the surgeon to operate the better, I'd have thought. 

I'm thinking PALs will be your best bet.  Which hospital are you under? The PALs team should be signed around the hospital or you can call or email.  Write down your concerns and questions and request a review. 

when you say in the chest wall is it still the breast tissue, not the bone or cartilage ?

Could you ask your GP to help you find out via the reports what they are currently aiming for?  My GP was actually pretty helpful in a couple of situations for me. 

The purpose of the multidisciplinary team is that they all agree on the best course of action for you and that doesn't sound like it's happening.

Ask PALs for the multidisciplinary team report as it stands currently and also a review of your situation in light of the possible slight difference of opinion and once you have those two sit down with your GP or come back here and we can see if we can help

how does that sound ?

hugs

Carolyn

xxxx 

Hi Carolyn,

Thank you for your reply.

I have looked further online and apparently some stage 3 cancers are operable and some aren't. It is usual protocol to shrink it first though if it is operable. Apparently my surgeon thinks it is as she is prepared to operate. She did tell me if she did it before shrinkage it would have been a different operation and it would be easier if it was smaller and detached from the chest wall. They hope the regime I am on will facilitate this.

I do not want to get PALs involved as I have no basic problem with my two consultants - I am hoping before July they get together again.

Dragonfly

Is your breast care nurse helpful?  If so maybe enlist ask their thoughts!  

hi

I can see why you might be reluctant to engage with PALs, my brother said never complain about the food in a restaurant until after you've finished eating but sometimes that's unavoidable 

In my experience I got much better treatment after I got PALs involved but they were very focused on what I would consider a successful outcome, at that point, for me, staying alive was pretty much the focus, a surgeon had missed a clearly visible tumour and I wanted it removing. The surgeon left the hospital, I don't know whether he was pushed or just moved on. These are professional people who do focus on making sure that if something isn't quite right it is put right ASAP.  I was pleasantly surprised at the improvement in care, even if they were cursing me in the staff room. 

I got a better surgeon to perform the revision surgery and as much time with my oncologist as I needed and , as you can imagine , I was incredibly nervous at that point, with horror stories of wrong drugs and wrong dosages playing on my mind.  I also got fast tracked for counselling sessions. 

I eventually got an apology and a promise that the imaging team would tighten up reporting, although I've never gone back to check any of that was implemented. 

Could you simply ask each of the two consultants to review you again in the MDT meeting and give you a concise update ?

You are allowed to be worried and you are allowed to ask for explanations to allay your fears.

We're not experts, this is all new to us and I think they forget that, and some patients just aren't interested in the why's and wherefores they just want to get their treatment done and get on with their lives, it's a fine line to tread when sharing information, especially when they are time pressed. 

And they see hundreds of patients each week and I know they don't necessarily read up on your notes each and every time.

It is a stressful time and hard to stay on top of everything that's happening and you can legitimately ask for clarification, as I did on more than one occasion.

I found that although I was prepared to be a patient patient I was often kept waiting for hours on end for a jab that took literally 3 minutes.

Sitting somewhere where I was visible in the waiting room and making eye contact each time they called someone in really helped speed it up. 

If the current regime isn't shrinking it I'd have thought switching to a different set of drugs or even a different brand should happen perhaps a bit quicker and it won't hurt to just ask that question. 

I had to keep on top of my treatment but I really do think, or rather I really do hope, that I was an exception !

more hugs

Carolyn

xxx

I feel for you - your life is in their hands and it’s so important to have trust in whatever treatment is planned for you.  Carolyn28 is right, they should be discussing you in a multidisciplinary team but I know from experience that not all clinicians take this as seriously as they could.  Your case is clearly unusual and even more important that everyone agrees what the best treatment plan is.  Could you ask your BCN about the MDT meetings and who’s involved?  I found my clinicians to be very open about this system.  If they are not, that would be a concern and definitely something to take to PALS.  Good luck.

Not really. I seem to have three but I don’t really see them.