What happens if I cannot trust my Oncologist?

Koukla

I went into the cancer centre I normally have my treatments for my 8th Paclitaxel on Tuesday, I told the receptionist that I wished to see my Oncologist before my treatment, she then told me that my Oncologist was taking a 4-week holiday now.  I almost broke down and tried very hard to hold my tears in the waiting room.  The reason I wanted to see her was because I have developed Neuropathy that my fingers and feet are quite numb and my tongue is a bit numb as well.


To give a bit of background, I was diagonised triple negative bc in July 2017, grade 3 stage 2a with no lymp nodes involved while I was in Brisbane.  My surgeon suggested to have single mastectomy but I opted to have a bilateral matectomy, like all the other ladies in the similar situation on this forum, I did not want to deal with the possible recurrance on the other breast later.  I did this surgery and 3 cycles of AC in Brisbane then transferred to NSW due to my husband‘s work. I have done 4 cycles of AC and 7/12 Paclitaxel so far (3x AC in Brisbane and the rest in Sydney).

I found the system in Sydney is very different from in Brisbane, or maybe just this cancer centre/or this Oncologist is different (?).  I was able to see my Oncologist before each treatment while I was in Brisbane or if she was too busy at the time she would come to have a chat with me while I was having treatments. Nurses were great and her secretary was very helpful. After I was transferred to the current cancer centre in St. Leonards NSW I  only saw my Oncologist twice because she is only there two afternoons a week and it is so hard to get an appointment to see her.  When I saw her four weeks ago she booked herself in to come and see me in the following treatment but guess what?  She did not turn up!

We all know how important it is to be able to trust our medical teams when we are dealing with breast cancer but at the moment I feel so insecure to be "looked after" by my Oncologist. I am more than half way to finish my treatments now so I don‘t think it would be a good idea to change Oncologist, but on the other hand I am also worried who is going to make a call to reduce my doseage or stop my treatments to avoid a permanent damage to my body?

Tennille

The neuropathy should resolve once treatment is finished. I currently have neuropathy and was told my treatment would only be reduced or stopped if I struggled with walking and I am ok with that. If you really feel you cant finish on this dosage then please let your Onc nurses know and tell them you need to se an Oncologist no matter who it is. She must have someone covering for her if she is away.

[Deleted User]

Make sure you let your oncologist know that your neuropathy is getting worse, especially if you feel it is affecting your tongue. I still have peripheral neuropathy more than 2 1/2 years after finishing Taxol. It has really affected my wellbeing. It affects everyone differently and some people recover much better. Just make sure you let them know how bad it is and get a second opinion if you need one. All the best. 

Zoffiel

They will have appointed a minion to stand in for the absent onc. Make a fuss and talk to someone with a medical qualification. I don't know who is authorising your treatment, but they are in the shit if they haven't seen you.

It's very hard when you have formed a relationship with someone and they piss off and leave you high and dry. The thing is, your relationship with your onc is professional, and they have a right to go on holidays. What they can't do is leave you unsupervised. You need to talk to an oncologist--there will be one, maybe not 'yours'.

You can sack them. Moving to a new practice is not nearly as hard as some clinics would have you believe. Problem with that is you have to start again. Up to you.

My advice is make a fuss and demand to see whomever is signing off on your treatment. Take your trusty folder and note book. Painstakingly write down their name and everything they say. It's one of my few passive aggressive moves and it works a treat. Marg

primek

Well they do need holidays too. Did you tell the nurse about your neuropathy?   My oncologist only visted 1 day a month. Everything else done by phone. If he was away they have a backup plan to discuss with another . Sometimes they reduce the dose. There would be a plan but you do need to tell the team what's happening. Your breast care nurse could be a help here on what to do..

kezmusc

Aren't they supposed to sign off on the scripts for the drugs before each treatment?  Some one has to be doing that.  Seems a bit odd if the scripts are being signed off by a doctor that has never met the patient.

Koukla

Exactly @kezmusc!

I have blood test on the same day before my treatment and this blood test results can be available with 20 minutes for red & White blood cell counts, as to checking for liver function it requires 2 hours.  I asked one of the senior  nurses there what would qualify me to have no problem for a treatment, she said normally people do not have problems with blood cell counts with Paclitaxel, however, liver function is more of a concern. I started to have the treatment 20 minutes after blood test so I assume they used blood test from last week for this week‘s treatment?  Go figure!

Koukla

On Tuesday before the treatment commenced I told a nurse about my numbness she then told me that another Oncologist was covering while my Oncologist is away.  This Oncologist came and talked to me and then we decided to give it a miss this week, I will call a nurse on Monday to let them know if my numbness decreases and ok for another treatment next Tuesday.

I felt so much better afterward, just have had a chance to talk to someone who I know can make a decision.  My initial post was just about how disappointed I feel with my Oncologist and how lost I felt with the situation.  I guess I am looking for some sort of reassurance.

Zoffiel

Reassurance is very important. Our mental health has to be considered alongside our physical wellbeing. Good that you've had a conversation with someone in authority (though it is still up to you who that person will be)

primek

I'm so glad it was sorted. I get you felt betrayed but oncologist are people to. The holiday might well have been sudden due to family illness so no notice ahead. Yes it's hard but I'm glad you were listened to. Focus on your recovery and have faith your team is doing exactly what they should have. 

Mrs_H

Ah that sucks. In my opinion, I think doctors forget that their patients don’t deal with this crap on a daily basis. If you’ve never seen it before, you really have no idea. I found I became so hyper aware of any tiny little thing which when mentioned turned out to be nothing (thankfully). But the things I thought were normal for treatment turned out to be things they were concerned about (upper lip tightness turned out to be neuropathy, who knew).

I’ve had a similar issue with my surgeon being on leave at the moment. No idea she was on leave and no back up surgeon to see. It’s not an urgent issue but I was advised to check back in with her about some issues I’m having post surgery. It’s more that I have no where to turn, then it is about seeing her specifically if that makes sense. I did try another surgeon who had covered her last time but they’re also on leave, go figure. (I am seeing someone about it so not to worry).

Glad you got to the answers you needed. I think it’s important to trust your team. I was funny on my oncologist in the beginning but in the end she has been the best part of my team. But if you’re nearly done, do you ride it out to get it over with...? Only you can decide.

Good luck with everything. Jen xx.

onemargie

Hi there @Koukla you may have already read that I had TNBC may 2016 aged 43 and I was the same as you stage 2a grade 3 double mastectomy and no lymph nodes involved and scans all clear and I had no family history and am negative for the gene.  My treatment was different to yours slightly I had 4 AC 2 weeks apart then 4 paclitaxol 4 weeks apart. And  my chemo was in Redcliffe hospital and prior to each round of chemo I saw the oncol or if he was away which was only once from memory I saw another oncol.  I finished chemo October 2016 and had  the neuropathy until July last year. It stopped quite quickly along with those dreaded hot flushes thank god around the same time. You definately need to speak to your oncol whenever you feel the need Maybe give the nurses a ring on the ward I would call them if I had any questions and then if they couldn’t answer them they would ask my oncol and then get back to me or he would call me himself. So not sure what’s going on down there in NSW but you definitely have a choice to change if you want for sure I wouldn’t hesitate it’s too important. I found keeping my hands moving and warmth on them helped too. Didn’t have it anywhere else . Margie xx

Mollygirl

@Koukla, what a shitty time of it you're having. The relationship and trust you build and have in your oncologist is a really big and important part of your treatment and care when you move into survivorship. I always saw my oncologist the day of treatment. And she was only a page or phone call away if I had concerns. I am in Brisbane - it must have been really difficult for you to leave and now with all this, gosh I would be pretty distraught. 
I guess ultimately only you can decide if you want to change oncologists. But again, you want someone who you can trust there for the long haul. 
Utilise your Breast care nurse as much as you can in the meantime and be assured that your chemo nurses will be checking your blood results as well prior to hanging your chemo. 
Hugs Lovely xx

Koukla

Hi @onemargie, yes I have been reading the posts on this forum so I am aware that we have the same type of bc and I am also negative on the gene tests.  Knowing someone has survived from TNBC gives  me the courage and hope to keep going with my treatments so thank you for sharing your stories, experiences and providing support to all bc sisters on this forum.

@Mollygirl, the way they work here seems to be different from Brisbane, I do not have a channel to talk to my Oncologist except making an appointment to see her (I tried the Breast Nurse, the chemo nurses and called the Cancer Centre) but like I said it was difficult to get her time. She does not come to see her patients who are having their treatments, this is very different from Brisbane too.  

I understand perfectly that everyone  needs holidays and this includes Oncologists, I guess like @Mrs_H says we do not deal with this on a daily basis so when I  have developed Neuropathy and the numbness has increased and even to my tongue I do need to talk to my Oncologist regularly to give me a piece of mind and make sure this does not become a permanent thing.

Well, my Oncologist is away for 4 weeks and this relief Oncologist seems to be more approachable (I have got an appointment to see her next week) and I only have 5 weeks to go if things progress smoothly so I tend to not to make a change now.  

How often are the followup checks after chemo is completed?   Would it be a good idea that I change Oncologist for followup consultations?

[Deleted User]

@Koukla change oncologists now if you’re not happy with yours. Number one in this article, in the link below is find an oncologist who is a people person and who knows their stuff. I posted this in another thread because I love it. Here it is again:

https://www.theguardian.com/commentisfree/2018/jan/12/five-things-to-remember-after-getting-the-dreaded-cancer-diagnosis?CMP=Share_iOSApp_Other

You deserve the the best care available. If you’re not happy, get a second opinion or make that change if you have the energy to do so. All the best. It’s about finding what works for you. 

Koukla

Thank you for sharing this article @LucyE, I like to very much!