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Confusion over treatment

Confusion over treatment

Posted by Goldfinch on Jul 28, 2020 8:39 am

I have a rare type on non-clear cell Renal Cell carcinoma.  I had a radical nephrectomy at the end of April.  I just started immunotherapy (Nivolumab) on Thursday.  I encountered roadblocks along the way and treatment was delayed (in my eyes).  Even though I volunteered to pay 3 weeks ago, they wanted to keep trying to get it funded.  I am now paying $3500 a treatment and wondering if it is too little too late.  I am really tired and in a lot more pain than I have ever been in the past. I am relatively healthy but the cancer has metastasized to more lymph nodes, my lungs, liver and spine - spine is the newest organ to get involved. Started with chemo, but the last CT scan showed that the cancer had spread so chemo was suspended a month ago.  Oncologist wanted to continue chemo regardless but then changed his mind when taking quality of life into effect.  Immunotherapy was discussed a couple of months ago, but idea was to see if the chemo worked.  I am wondering if this kind of waffling over treatment is normal.  Any thoughts?  I am also wondering if I present too healthy for the doctor to recommend abandoning all treatment.  

Re: Confusion over treatment

Posted by Lacey_adminCCS on Jul 28, 2020 9:58 am

Hi Goldfinch‍ 

There are often treatment protocols set up for certain types of cancers. The protocols indicate first lines of treatment, and alternatives if that first line doesn't work. Having a rare cancer may also be impacting treatment decisions and may be what is making the situation feel so complicated. 

Here is a link to other discussion threads about Nivolumab https://cancerconnection.ca/search?query=Nivolumab. Feel free to reach out to any of the members who have posted about the drug by replying to them and tagging them by typing the @ symbol and their username. 

I think your question is a good one, and one that only your Oncologist can answer. What you want and your quality of life are so important. Do you feel like you can ask for another discussion with the Doctor? Have they said at what point you will know if the Immunotherapy is working?

I hope you get some clarity soon, wishing you well!
Lacey

Re: Confusion over treatment

Posted by Goldfinch on Jul 28, 2020 2:56 pm

Communication with the oncologist is very limited: access is complicated.  I see him once a month and a lot of times his answers are not always based on scans or reports.  I know that they are very busy, but I wonder how closely he reads my file.  He was keen to continue chemo even though the latest CT scan showed new areas of metastasis.  And the diminished quality of life around chemo was documented.  The oncologist never explained what effect chemo was supposed to have on the metastases.  I think COVID has not helped the situation.  

Re: Confusion over treatment

Posted by Laika57 on Jul 28, 2020 6:00 pm

Goldfinch‍ sorry to hear about your diagnosis and struggles getting proper answers.
i believe you have reached what i just decided to call "tantrum time".
 That's when you leave messages with everybody on your care team (chemo nurse, cancer clinic, doctors office, patient relations and whoever else you can think of) asking for proper answers. Then you write to patient relations and anyone whose email you've got, reiterating your question.
my hubbys oncologist has been reluctant to treat him from the start. (He also treats me like an uneducated hick, because i once asked him to clarify a medical term i didn't know - i actually studied sciences in college, but english happens to be my third or fourth language, and medical jargon hasn't really come up prior to this, all of which leaves me taking just a tiny bit of offense).  So with my husband being 8 weeks post surgery, and not having heard from ththe oncology team at all, i  wrote to the patient care manager today inquiring as to whether the oncologist is still on the ball, or whether we could change to someone who won't be as reluctant, nor treat me like i am stupid. - just waiting to see what response that will get me.

ah, writing mean emails. My newest hobby.... 

hope you will get some answers soon.


p.s. if all else fails, call the hospital switchboard and ask whom to speak to if your doctor and patient relations ignore you - that got me a direct connection to the hospital president, who lit some fires under peoples backsides...
Have you hugged your dog today?

Re: Confusion over treatment

Posted by Cynthia Mac on Aug 1, 2020 8:24 am

Hi, Goldfinch‍ , I agree that sometimes, you just have to assert yourself to get the answers you need. We were fortunate: Dad’s oncologist was wonderfully attentive when we were at his appointments, but I’ve learned here that not everyone has that experience.

Sometimes, it can be as simple as saying to the doctor, “I’m having a rough time with this: could you please stay with me in this moment while I express my concerns,” and sometimes it’s necessary to come right out and suggest that you’d like a referral for a second opinion.

Learning the hierarchy of the oncology department can serve you, because sometimes concerns can be addressed at the “next level up” without having to go to patient relations or the CEO of the hospital. 

I always try to remember that perhaps the doctor’s last appointment didn’t go so well, or maybe he’s got a rough one coming up, and even though they are trained to deal with these scenarios, they are still human. However, when it happens to a patient time after time, it speaks to a pattern that needs to be addressed.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Confusion over treatment

Posted by Lacey_adminCCS on Aug 1, 2020 8:33 am

Goldfinch‍ 

When my Dad was going through treatment we had a lot more regular contact with the Oncologists' nurse. She would get answers for us from the Oncologist and would take extra time with us.Does your Oncologist have a nurse working with them?

It's so important that you are able to ask questions and get the clarification you need. I would want to understand why the same treatment is continuing despite growth. It would be good to know if there is a certain protocol or if treatments have worked with more time. It is your right to ask for a second opinion. 

In each of your posts you have mentioned the importance of quality of life. Does your Oncologist know how you feel about this?

We have a helpful read here: Advanced Cancer:https://www.cancer.ca/~/media/cancer.ca/CW/publications/Advanced%20cancer/32043-1-NO.pdf. It has lots of good info that can support your conversations.

I hope you start feeling better supported and more confident in your team.

Lacey

 

Re: Confusion over treatment

Posted by Goldfinch on Aug 1, 2020 10:42 am

The person I speak to the most now is my palliative care nurse.  She knows what quality of life really means to me.  

For some cancer patients (past and present) the oncologists where I live are tolerated.  The phrase “I didn’t think he read my file” elicits knowing nods.  And I actually don’t think my oncologist has a nurse.  He is a long time locum.  When I did have an oncologist with a nurse she was impossible to get a hold of.  

 I don’t appreciate ‘quality of life’ being used as an excuse for stopping chemo if the treatment was effective.  Apparently in this doctor’s opinion more mets means chemo is working.  The only improvement noted in the scan report was in the area where I had cancer surgery and the report speculated that the improvement may be the result of surgery.   That improvement was what the oncologist held up as evidence the chemo was working.  No post surgical (or pre-chemo) CT scan was done.  I did ask about getting one but didn’t push it.  

When chemo was suspended I was both very upset and relieved.  Relieved because I didn’t have to go through chemo again even though treatments were getting easier to tolerate.  I was upset about not getting chemo because my wussiness was the reason why a potential life extending treatment was stopped.  

There was a confusing plan going forward, one that only became clear when I talked to my palliative care nurse.  She told me that the oncologist wrote that I agreed to pay for a different drug than was discussed at length during the appointment. She assumed I was party to the info on my chart.  She could not find a referral to radiation oncology.  She also discovered that I was a candidate for a 2 unit blood transfusion.  

I am getting immunotherapy treatment now and had a bone-scan that confirmed there is just the one lesion (yayyy!). I hope to start radiation treatments by the end of August.  And if I have an issue, I talk to my palliative care nurse.  I am so grateful for her advocacy and empathy.  
 

Re: Confusion over treatment

Posted by Boby1511 on Aug 1, 2020 12:18 pm

Goldfinch‍ 
i feel for you not getting good care. 
I have a great team of doctors even thou I’m dying. Jurvinski Hospital has great teams of doctors. My main guy returns all my calls tells me to call whenever I have questions. Dr J is a wonderful doctor. He was very patient on phone with me as he waited for me to finish crying to get my questions out. My local doctor has been great too. Been lots of follow up. I have no other options other than the doxorubicin chemo by iv which I’m doing. I have gotten into scans quickly and everyone checking the blood. I also have blood clot and abscess doc and ostomy people apart from oncology team. I’m good that way. I wouldn’t have gotten this far without dr J. I’m going try die at home. I hope you get good people.

Re: Confusion over treatment

Posted by Boby1511 on Aug 1, 2020 12:23 pm

Lol I also have radiation doctor although not doing radiation as it’s ineffective for my type of cancer. Not sure why I still have that doctor. I also recently had another emerge overnight... oncology people have been great so far. You have the “fever card”? Get into hospital free card. Lol. Like monopoly. At least no waiting to see a doctor.

Re: Confusion over treatment

Posted by Lacey_adminCCS on Aug 1, 2020 8:43 pm

Goldfinch‍ - SO glad your palliative care nurse is in your corner helping you navigate all this.