MBC found 1st May 2023 and as of 25/12/2023 .... no pet scan.

Kiwigal

Its seems the local hospital has no protocols in place to deal with a patient with claustrophobia. They have continually delayed giving me the scan and I will not consider any treatment until I am fully aware of the spread of the mets. From day one I have had nothing but drama and stress with the hospital, getting a call the next day after CT telling me I had to go to a private clinic of their choosing, have a 3D mammogram and biopsy under US and when speaking to the clinic they said  the bill would be in the thousands. I refused, contacted Qld Cancer Council, Breast Cancer Foundation and a local MP in opposition. The next afternoon I got a call from the hospital nurse telling there had been a mix up and of course I did not have to pay. My new GP warned me of a backlash as this hospital is known for it. They were right. After the biopsy ( clinic refused to do the lymph node  biopsy as they were not given any CT info) I had a meeting 3 weeks later with a surgeon who was just awful. He dehumanised me and never at all asked what I wanted or how I was feeling. He told me the chemo would ruin my heart and make me feel like death, when I said that I needed the full picture with a pet scan before making decisions he replied that he hadn't decided that I would get one. When he had me strip my top and bra off and examine me in a position that the public could see me I totally shut down and switched off. I decided then and there that I would not go back. It took my GP months to talk me into going back and they arranged that I would see the hospital oncologist that they had spoken to. I phoned and made the appointment to see him. When the day came, I arrived at Oncology only to be told he was not there and never intended to be. Then the front desk started laughing after I got visibly upset. I left and went home. When hubby came home I was finishing my second bottle of wine. My GP perservered and made an appointment again and this time they told the staff that they would be attending. They rang my GP back and said he had a family emergency and would be away for weeks. My GP told them to make an appointment foor his return. So weeks later we go to see the oncologist. I see a junior doctor who was nice and he agreed that a pet scan should be the first step. I was relieved until the Oncologist came in and said sedation would not be given as it is an easy procedure. I explained that with the chest CT of 3 mins I was given intravenous diazepan which lasted 2 mins 45 seconds before I had a panic attack. I got a hearty "oh, you will be okay"with a pat on the hand. He then said they would organise a shot of Denosumab next visit. I asked what it was and told I didn't need to worry about it. His junior gave me a prescription for Letrozole. I was told the pet scan would happen within 2 weeks. 3 weeks later I got a call from the woman who would be doing the scan. She was surprised when I asked if she was told about my claustrophobia. She said as far as she was concerned the scan would not be given until twilight sedation was offered. Since then nothing at all. On the 20th Dec I went for a follow up appointment  on my own and a different doctor appeared and as I was extracting myself from the uncomfortable waiting room chair the doctor rolled her eyes and said " I don't have all day". I left. If she had been decent I would t of told her that I stopped taking Letrozole on day 15 as the side effects were just awful.

Clancy

Sounds horrendous, its one thing to have a diagnosis of cancer but if you also have a fear of the procedures whether they be scans, needles etc that just adds to the stress of it all.  I had several MRIs before my diagnosis because of a fear of the contrast IV where we had to abort the scan and I had to follow up multiple times despite my fears.  I finally had the guts to take diazapam, don't know why it took me so long and since then I have been focusing on more meditative techniques.  The experience really depends on the people assisting you through it though and I always communicate that I am a nervous patient.  I have finally got there somehow and currently going through radiation treatment and have found the team to be really organised and efficient but still going at my pace.  I hope you find a good doctor and can get the scans you need to go forward.  

Kiwigal

25 yrs ago when Auckland Hospital realised that I had severe claustrophia they told me to come back in 24hrs to  give them time to sort out twilight sedation for an MRI. Claustrophobia is classed as an anxiety disorder in most 1st world countries. I should not to be made to feel like a fffing nuisance because of it. Queensland, one hour and 20 yrs behind I think is the common saying. I was refused radiation treatment for the bone pain because of it as well. I am unlikely to go back to  oncology again because of their behaviour. I also am coming to the realisation that I will have to take matters into my own hands when the pain becomes too much as I have no chance in getting the VAD option.

Cath62

Hope you can get your scans and treatment sorted quickly after Christmas. Wishing you all the best.

June1952

Gosh @Kiwigal, you have been through a rough time.  Your story is unfortunately a common one.  Some of these medicos have absolutely no thought as to how they sound to patients.  They can make or break one's experience through all this.  Whilst I think you are brave to walk out I do feel as though that 'cuts off your nose to spite your face' as the saying goes.  Do you have someone to go with you to appointments to be an added advocate ?  Being claustrophobic as well I certainly do understand your concerns and the medical profession should respect that and work around it.  Thinking of you  💖

Kiwigal

I do not believe I have cut off my nose to spite my face as the hospital has made it pretty clear they only want me to take toxic harmful drugs rather than do the basics to find out the extent of the mets i.e, a pet scan. I have not even been given a bone density test but they want me on Denosumab which has a severe rebound effect just after 1 shot and that drug is responsible for terrible side effects. Is there anyone out there who has metastatic breast cancer and not had a pet scan? I do not trust a doctor who  believes patients should not ask questiions and just follow them blindly as these days it is pretty simple to find info on drug trials and side effects. Also if a doctor does not have the skills to ask a patient what they want out of a treatment regime or just actually listen, they should change their profession. Also I believe a doctor should  disclose if asked by a patient, what, if any perks they get from drug companies, that law changed a few years back. I am not scared of dying but terrified on how bad it will get before I do.

Mez_BCNA

Hi @Kiwigal

Thankyou for sharing your story.

We acknowledge the extremely difficult experience you have had and hope that you have a good support network. We would encourage you to call the BCNA Helpline when we return next week (03/01/23) if you wish to discuss further and explore any potential supports available.

In the meantime you may find the below My Journey article helpful - "Getting a second opinion about your breast cancer treatment" https://myjourney.org.au/article/25172

brightspace

Hi Kiwigal
I am a public patient 8 years Long time mets patients here
I have attended a Sydney public hospital with the same Oncologist 
The standard tests are CT every three to 6 months 
Pet scans are rarely offered and for me would have been cost prohibitive when I was first diagnosed
Hoping that your tests and therapy  begin  as soon as possible
My last CT in early December was in a new model machine ...less restricting and larger opening 
All the best
Bright in hope

Kiwigal

I have had no bone marker tests or a bone density test or full bone scan done. There is no way I will take denosumab as I have done due diligence on this drug and the fact that the oncologist did not disclose the wide ranging side effects or the rebound effect after 1 shot if you want to stop this drug. I willalso will refuse Palbciclib due to Pfizer putting out a media comment  in 2022 that this drug does not extend oveerall survival rate, so the question is why would someone go through the horrible side effects?

Cath62

@Kiwigal, not sure where you get your information from regarding kisqali but there is enormous scientific evidence to indicate good success for many for years. I know many ladies who have been on that treatment for years. 

As for side effects that too is incorrect. Evidence shows that most people tolerate the treatment very well. I know some who are working.  

Your choice to not take a treatment but let others do what they want and is best for them.

brightspace

Cath62..totally agree
What is most important if we are to continue to have a quality of survivable life from an initial mets diagnosis is to start the therapy as advised
 if you do not tolerate the drug you try another 
We are extremely lucky to have pbs drugs available ...no big pharma is not the issue 

sometimes too much can be read into one person posting about taking a special therapy 
We are all different

Everyone can have differing side effects
I have put up with minor side effect from some Ihave been on
Others I have to stop or lower the dose


New year cheers

 

Cath62

New years cheers to you too @brightspace.

We are lucky to have great treatments available and more to ccome.i remain ever hopeful on that front. 😀 

Kiwigal

I was not offered Kisqali. Just Denosumab. I am not sure how to delete my comments as it sure is obvious that my comments are not welcome. 

brightspace

Hi again Kiwigal
 hope you will stay

Only here to offer guidance and assistance if required
Trying to stay postive is very difficult and sometimes some posters are confused as to the treatment that is needed for them.
As you mentioned. Denosumbab...this is a bone strengthener  
So have you started another treatment such as AI...anti esterogen hormone these are usually offered first
Kisquali is usually offered in combination with another AI called Faslodex..I have been on both 
All the best Bright

MargaretTurner

I was diagnosed with metastatic lobular breast cancer in March 2023 - huge shock after 23 years cancer free - on kisqali & letrozole & tolerating well mostly did have dose reduced after a few months 

Ktre

Hi, unknown if @Kiwigal still on here, I really hope you got the answers you needed and treatment and scans are being done.
I have stage 4 BC to the liver, diagnosed Dec 2021, have been on Palbociclib and Letrozole for 2 years now, yes I have side effects, yes my life has changed a bit but I am still here, I am still alive. Side effects relatively minor, I would say the fatigue is the worst, had to adjust my work life balance a bit so I can still function for family and enjoy life.
I really hope you find the answers you are looking for, in my experience the team you get is very important, hopefully your team listens and respects you more. Please reach out to Cancer council, or BCNA for support.
Agree that everyone is different, they need to find what works for you, positivity had a lot to do with it. Done ladies have lived with stage 4 for over 10-20 years. Don't give up