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Need Your Opinions, Advice, Suggestions
LisaPisa
28 Posts
Good morning All,

I am in a dilemma and I would love to get your feedback on possible options.

I was diagnosed in February (3 months ago) with Stage 4 carcinoma of a unknown primary (CUP). Yes it has been a rollercoaster ride. There are 5 main tumours on my abdominal wall - most are under 2 cm and are moderately differentiated and slow growing. However, recently they biopsied the largest one and it turned out to be a more mutated tumour with poorly differentiated cells. There is no chance for surgery right now.

My oncologist here in Toronto is a good doctor, but has lousy bedside manner and is quite argumentative and stubborn. Perhaps stubbornness is a good thing, but whenever I talk to her my stomach starts hurting. Maybe it's me and I'm just as stubborn. She wants for me to have Carbo/Taxol treatment even though we don't know the primary site. This is a heavy duty chemo administered in hospital and it lowers your immune system. You go through all the traditional chemo side effects, muscles aches, vomiting, hair loss, fatigue, etc. However, one good indication of how I will react is that my twin sister went through almost the same chemo but only experienced hair loss. Otherwise, she was fine.

Anyway, I have an oncologist in Europe also and was planning to go there for a PET scan and possible treatment. I can get coverage since I also have resident status there.

My dilemma is, do I stay here and do the Carbo/Taxol or do I go there and get the PET scan and possible other treatment?

I know that Covid may be a concern for some, but a little known fact is one can avoid all the red tape if they have a doctor's note stating the treatment.

I have to make the decision soon, in about a week, before I get the Carbo/Taxol here because, once I do, I'm stuck here since the treatment is not flexible.

What do you guys think? I will answer any questions if there are some things I left out. Thanks!

Lisa
14 Replies
ACH2015
2021 Posts
LisaPisa

I too was diagnosed with (Stage IV) Adenocarcinoma of unknown primary back in June 2016.

My first (of many) treatments was the same combo of Carbo/Taxol chemo. I had 6 rounds of that treatment. I also had 3 surgeries, and radiation. Then immunotherapy and surgery #4 when the immunotherapy failed to kill the recurrent cancer in 2018. The recommendation for chemo normally comes from its current location, the best estimation of where the cancer traveled from, and what it resembles under the microscope and its tumor marker composition.

So my question to you is this: Where do you plan to live during your choice of treatments? If you want a 2nd opinion in Europe, you best plan to live there during treatments. Remember each treatment is unique to you, and failure to begin in a timely manner normally results in growth of (current) cancer, leading to further difficulty in obtaining control.

If you are being treated at PMH in Toronto - you and I likely have the same "unknown primary" specialist. I'd suggest you ask your oncologist why the carbo / taxol is the only choice. Likely, its because its been assessed as your best treatment based on all the information available. It is a conventional treatment, and you can't get into clinical trials (like me) unless your conventional treatment fails or fails to continues to do its job.

Remember as well, choosing a treatment means you can't just stop and start another type of treatment. You need to allow the drugs to leave your system before starting anew usually.

Did your oncologist not offer / recommend a PET scan for you here in Ontario? I fought for and won twice after the Oncologist submitted and was denied funded PET scan for me.

Remember - what goes on in Canada is not always what goes on in Europe as far as treatment goes. If you choose treatment outside of where you live - you could be setting yourself up for more issues. I'd also suggest you ask your oncologist if your case was brought up at a "tumor board". This is an informal 2nd opinion where your oncologist speaks with their peers about your case and seeks opinion from that board.

FYI - I did not want to endure chemo or anything else myself. But without it and all the treatment I endured afterward, I would not be writing this right now. The side effects will eventually dissipate, your hair will grow back, and hopefully control of your cancer will be gained. Nothing is without side effects, or cost. So weigh your options carefully. Normally your first shot at treatment is your best shot.

ACH2015

Essjay
1484 Posts
LisaPisa‍ Im sorry for your diagnosis and the rollercoaster it has started for you.

Great advice from ACH2015‍ who’s been through it.

I know you don’t want chemo, but you are going to need some kind of intervention to reduce your tumours and it won’t necessarily be different in Europe...

These days the oncologists use models (mathematical algorithms) to identify the best treatment options, as well as following protocols which have been established by experts backed up by peer-reviewed research. This means the protocol in Toronto is the same as in Winnipeg. It’s likely European doctors are using similar models and similar protocols evidenced by the same peer-reviewed research...

I didn’t want chemo, but i wasn’t as bad as I expected it to be...The doctors tell you all of the side effects because they have to, but most of us don’t get many of them at all... I would be asking what the oncologist believes will be the benefit of chemo - what does she expect to achieve and how does it help your prognosis versus no treatment. Then if you go to Europe for a second opinion you have something to compare with if they offer anything different.

Sending best wishes whatever you decide to do - it’s a safe space here to bring issues and concerns. essjay
Boby1511
454 Posts
LisaPisa
Hi there, sorry to read your diagnosis.
Have you asked your Canadian doctor if there would be any difficulty obtaining treatment here, should you go to Europe to have treatment and wish to return to Canada? Cancer of this origin tends to require long term observation and ongoing care.
I too would probably ask why you can't have the PET here, they are available here.
Have you asked your European doctor what the possible other treatments may be? It's a big cost and delay to get a recommendation on the same treatment.
Sometimes other Countries are more advanced in cancer treatments, but not always.
Also you leave Canada for more than 6 months you may lose your Canadian health benefits.
I would probably consider where I would like to be long term.
But then I'm only Canadian and love my country.
I joined a sarcoma (this cancer I have) facebook page, most of the people are US or other. The majority of the people have all gotten the same first line of treatment as me - doxorubicin. Even the second chemo my doctors are recommending is again what the Mayo clinic in the US is recommending to its people in my boat. I think the main difference I have found, is the Mayo clinic is more inclined to operate. But even that has its limits. Would they operate on me? I don't know. Would it just make things worse as my doctors here believe it would? I don't know. I speak with one lady and they have operated on her annually (she has the same cancer as me), but for the past 7 years she has had a recurrence. Are the surgeries just encouraging other tumors as my doctors believe? They have also told her that this was her last surgery, they would do no more.

Sending you best wishes as you make this difficult decision.
LisaPisa
28 Posts
Is there only one unknown primary specialist at PMH? If so, yes, we probably have the same doctor. She did apply for a PET scan for me but it was denied yesterday. If I want a PET scan I must go to the one place in Toronto that has it and it costs $2200. PET scans should be more available in Ontario. The criteria that one must meet to get approved is too specific. Unknown primary, after various scans and gene study, is a pretty good reason to be able to get approved.
LisaPisa
28 Posts
I do want chemo, but I realised how inflexible IV is. I must be there every 3 weeks. There is an oral pill for Taxol that one can take but it is not available in Canada. It would give people so much more freedom.
Here's a link to a study showing that it is more effective than IV and does give a longer survival rate with less side effects.
https://cancerres.aacrjournals.org/content/80/4_Supplement/GS6-01
and here's a recent update on its status in the states.
https://www.cancernetwork.com/view/fda-grants-priority-review-to-oral-paclitaxel-encequidar-combo-for-metastatic-breast-cancer
I sent my liason this link also since nobody is allowed to email the oncologist directly.
LisaPisa
28 Posts
It occurred to me that perhaps they can correspond with each other. I know the doctor in Europe has no problem with this and is willing to help in any way. I cannot say the same for my doctor in Toronto.
LisaPisa
28 Posts
I never got a straight answer from the oncology surgeon who I was first referred to by ER. I still am not quite sure why she couldn't operate, perhaps it was because there'd be no point if we didn't know the primary. It would just keep reappearing elsewhere. And it may disturb the current tumours and spread to other parts of my body.
Boby1511
454 Posts
LisaPisa
Your doc here may surprise you and encourage any feedback from your European doctor. I would ask.
My oncologist sent referrals to 2 other hospitals that have sarcoma centers to get a recommendation on treatment. My oncologists was the first to say that he had limited knowledge of sarcomas. And we proceeded with the recommendations. Which is good should I choose to do chemo again. As my doctor here was recommending an IV chemo that would require a 24 hour drip and hospitalization, Toronto suggested something else and we would be going with that one, shorter hospital visit.
My surgeon and second opinion told me that if they can't operate with intent to get it all then they don't go ahead with surgery. Unless for palliative reason to alleviate pain. I would think your reasoning on why they are not operating on you is correct. They need to find the primary or be assured there is nothing else.
I had IV chemo every 3 weeks for 6 cycles, one delayed, it was bad, but it does end. Could you get these drugs brought over from Europe? I would think not, but worth the ask.
Perhaps you can appeal the PET decision as suggested above.
ACH2015
2021 Posts
LisaPisa

There is an appeal process that can be taken re PET scan denials. It is BS if you ask me. The specialists reason / recommendation should be enough to get a PET scan outside of those that are funded. Its all about money. The reason mine was denied was that the PET scan board said it would not change the treatment process. I argued that knowing where any additional cancer is important to both treatment(s) and quality of life. Kind of important stuff to me. You could ask the oncologist to file an appeal for the scan.

PET Scan Ontario I've included the website / contact info for you to understand the process.

Also - Looks like the players changed up since I contacted the MOH Ont. myself.

Nina Arron
Director | Health Protection and Surveillance Policy and Programs Branch (Health) | 416-212-4873 | nina.arron@ontario.ca
Interim Director of Operations | Office of Chief Medical Officer of Health, Public Health (Health) | nina.arron@ontario.ca

You could contact this person and determine if they are the responsible parties to oversee PET scans.

FYI - When I won my PET scans (that were denied and unfunded) I was told the parameters had changed. If you would like to send me a private message - I would gladly share further information from the MOH with you.

ACH2015
LisaPisa
28 Posts
Thanks Bobi1511,

May I ask how the chemo went for you? I hope there was a good improvement. I read Taxol is effective. That would be reassuring for me concerning my proposed treatment if it all went well for you.

Yes, they offered me the 3 hour drip every 3 weeks. I have asked the European Oncologist if I can bring back any novel treatment here. Let's see what he says. That would be ideal. However, I don't know if my oncologist here would actually be allowed to monitor a drug that isn't approved here. Hmm. Interesting question. Has anyone done that? Brought over a drug prescribed by another cancer center to have it monitored here? I suppose perhaps with Video calling, it could be done. If so, let us know!

LisaPisa
28 Posts
Yeah, the treatment process would change if they could find the primary because what they are using now may not be right for a primary. For example, they thought it was breast cancer at first so I was just about to go in for Ibrance, but, the next day they found it was not breast cancer and Ibrance might have caused more damage than good since it was to treat ER+ cancer. The new biopsy shows it could be any cancer now. I'm glad you told me that because unknown primary would be a perfect reason for a PET scan since once you do find out, the treatment will mostly likely change.
Boby1511
454 Posts
LisaPisa
I had doxorubicin (chemo), which is a vesicant drug, can blister the tissue. They put the doxo into 2 large syringes, these are then pushed into my IV line by a nurse over a half hour, its a slow push.
Side effects - I got em all. Was hospitalized a couple times to manage. But I was still recovering from surgery and still weak and anemic. I had a very invasive surgery, couldn't be avoided, my tumor was 28 cm and had grown and attached itself to multiple places including my back. Was this time last year, died twice on the table, I joke now that maybe there is brain damage! lol. Oh well all manageable today. Chemo was rough but they are not recommending this one for you. My next one is different too, and will be an IV drip for couple hours, so not too shabby should I go ahead.
Improvement - no shrinkage to my recurrence (current tumor is 3.6cm), but it is in remission at the moment. How long can I stay in remission? Who knows, docs thought I'd be dead by now. But this is the best I've felt in a year and a half!

Your chemo does have some success stories out there. My wish is you become one of them. Can't hurt to ask if you could be monitored here with another countries drug... same name... Canada does participate in some studies with the US, you never know. Perhaps they would allow you to do the chemo at home after they see how you respond. There is some comfort thou doing it in the hospital, should anything go wrong.

Sending you best wishes.
LisaPisa
28 Posts
Wow, how harrowing! God said you weren't ready to leave this earth and that you need to post on cancerconnection to give others hope! :)

If anyone has any success stories regarding Taxol, please let us know.
LisaPisa
28 Posts
Thanks for the information. I wrote her already presenting my case. Let's see if she gets back to me.
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