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please help with questions to ask tomorrow

please help with questions to ask tomorrow

Posted by Bird on Jan 10, 2021 12:32 pm

Good afternnoon
I haven't posted in awhile as all has been good with my mom.
She has stage III non-small cell lung cancer right upper lobe which had spread to her lymph nodes.
This was diagnosed last January.  She finished her chemo and radiation last May. 
She had her first follow-up CT scan last June and treatments worked well.  Another CT scan in September all was good  - her small nodular density was 3.7mm
She recently had a ct scan in December and we just found out that the right upper lobe increased from 3.7 to 5.2mm.
She is being followed every 3 months with her oncologists in Ottawa. 
Tomorrow we have a follow up call regarding this scan....
I was wondering if anyone could give me advice as to what kind of questions I should be asking the dr.
We also know that she is EGFR +

Thank you in advance
Brigitte

Re: please help with questions to ask tomorrow

Posted by Brighty on Jan 10, 2021 2:22 pm

Hi Bird‍  I will draw the attention  of this post to WestCoastSailor‍  and Kuching‍  who can help you come up with some great questions to ask.     
Help is out there. All you have to do is reach out.

Re: please help with questions to ask tomorrow

Posted by WestCoastSailor on Jan 10, 2021 3:47 pm

Hey Bird‍ 

Good question! Have you seen this little booklet on lung cancer? https://www.cancer.ca/~/media/cancer.ca/CW/publications/Lung%20cancer%20UYD/32088-1-NO.pdf

Lung Cancer Canada has another one. https://www.lungcancercanada.ca/Resources/Patient-Guide.aspx

And here are a set of question from their site for potential targeted therapy patients (which with EGFR+ your mom is.)

QUESTIONS TO ASK YOUR CANCER CARE TEAM ABOUT TARGETED THERAPY

  • What mutations were found in my biopsy sample? What are my treatment options?
  • Should my cancer be tested for other mutations?
  • What is the goal of targeted therapy?
  • How long will this treatment last and how often will I receive it?
  • What drugs will I receive and how do they work?
  • What side effects might occur and what can I do to cope?
  • Are any of the side effects permanent?
  • Who can I contact if I develop any side effects?
  • Are there drugs to help with side effects?
  • Am I eligible to participate in any clinical trials?
I see that I already posted the link to the webinar by Dr. Noonan. https://www.youtube.com/watch?v=3DaUwQ8ab44&feature=youtu.be

But it might trigger some other questions.

From my personal experience I would focus on the side effect questions. There are some pretty common ones and having the tools in hand to deal with them as they arise is really helpful. I got a briefing from the oncology pharmacist when I started that had some really good tips too.

Good luck on Monday.

Angus

PS - Drop in our check in thread and let us know how things go. https://cancerconnection.ca/discussions/viewtopic/68/67043 AP
My story: http://journey.anguspratt.ca

Re: please help with questions to ask tomorrow

Posted by Kuching on Jan 10, 2021 4:14 pm

Hi Bird‍ .  Angus has pretty much covered everything.  EGFR+ is good news, she will probably just be taking a pill a day.  It will be a lot easier to handle than chemo!  Side effects can vary wildly, all I can say is that after over a year on targeted therapy, I am still stable (stage 4 lung cancer) and rarely have any side effects any more.  I hope this works for your mom!  Please let us know what you learn tomorrow.

Re: please help with questions to ask tomorrow

Posted by Bird on Jan 10, 2021 5:41 pm

thank you for all your luck.
I will gather all my infor for tomorrow
I feel more prepared now

Re: please help with questions to ask tomorrow

Posted by Bird on Jan 10, 2021 5:43 pm

I remember being told that surgery was not an option - and I didn't write down why not surgery.

Re: please help with questions to ask tomorrow

Posted by WestCoastSailor on Jan 10, 2021 8:22 pm

Usually surgery is not an option when there is cancerous lymph nodes or it is too close to main arteries or veins.

Just a quick note if you tag me - type @ and then start typing my user name, selecting it when it pops up - I will get an email letting me know that you have responded.

Again I hope things go well.

Angus
My story: http://journey.anguspratt.ca

Re: please help with questions to ask tomorrow

Posted by Bird on Jan 11, 2021 5:03 pm

hi there
for some reason the dr could not include me on the call.....
My mom just called me to say that it seems to be a new nodule that they are talking about that has gone from 3.7 to 5.2.
I just reveiwed all the scans and on the last 2 scans, it was never mentioned that she had a new nodule.
So she can't have a PET scan yet because something about it'll only show up on PET if over 7mm. I thought PET scans were better than CT scans...
Basically she will have a ct scan in 3 months and if it grows than radiation. NOt understanding why she can't start taking that pill.
I've left a message for the oncologist to call me because I'm just confused. 
Can anyone think of things that I should ask the oncologist?
This is really not what we were expecting since on none of the scans does it mention new nodule .  It actually says on both scan no new lung nodules have appeared.

Thank you in advance for you support
/brigitte

Re: please help with questions to ask tomorrow

Posted by Lianne_Moderator on Jan 12, 2021 5:52 pm

Hello Bird‍ 

I am going to tag Kuching‍  and WestCoastSailor‍  back into the conversation so they can chime in.

If you want to reply to someone directly you can type the @ sign and then their username and when you see it in the list, select it. The member will then get notified that they were mentioned ( like I have done here with your name )

Lianne

Re: please help with questions to ask tomorrow

Posted by Kuching on Jan 12, 2021 8:01 pm

Hello Bird‍ .  I agree with you, if there’s no mention of a new nodule in the scans, then it’s not there.  And also agree, if she is EGFR+, then she should be starting on a targeted therapy pill.  If it works, radiation won’t be necessary.  That would be my main question to the doctor, for sure.  

As for CAT scan vs. PET scan, I think it’s a case of apples and oranges.  They work in very different ways.  The PET scan, as I understand it, lights up areas of glucose activity, which mean something unusual is going on at that site.  So yes, the tumour may be too small to show up.  I have a 25 mm tumour, it shows up no problem!  

You are obviously a strong advocate for your mom - good for you!  Don’t be afraid to speak up - this whole process is stressful enough without being kept in the dark about what’s going on.

Re: please help with questions to ask tomorrow

Posted by WestCoastSailor on Jan 12, 2021 9:53 pm

In the interests of keeping stuff in the thread I'm copying the response from my profile over here...

Bird‍ 

I agree something doesn't compute here. The difference between PET and CT though is not resolution but activity. A PET scan shows uptake of glucose by cells. The assumption being that cancer cells are more active and use more of the glucose.

You may run into some challenges with privacy with the oncologist. Your mother may need to give permission to discuss her case with the oncologist. And yes it surprises me that doctors can use fantastically complicated diagnostic technology but a conference call defeats them but sad to say not unusual.

I'm wondering if age or co-morbidities play a role here? It also strikes me that the nodules are indeed relatively small.

I hope you are successful in getting explanations.

Angus
My story: http://journey.anguspratt.ca

Re: please help with questions to ask tomorrow

Posted by Bird on Jan 13, 2021 10:38 am

I spoke to the oncologist yesterday.  This is a new nodule (5.2mm) that was not recorded on my mom's ct scan back in September.... an error on their part.
I've been told that it is still too small to do anything with it, therefore need to wait until at least 8mm.  She is scheduled for her next scan in March and follow up in April.  If it grows and has stayed local - then they are looking to do local radiation 5 to 6 treatments.  If it has grown and more spots - then this is where she would start taking the pill because she is EGFR +.
My mom is pretty upset because this was not noted on the scan from September.  I'm trying to explain to her even if it was they would still not do anything and would monitor it.
She's wondering why wait until it grows bigger to do something ... but as the oncologist explained to me that it is still too small and they need to wait to see if it grows and then to do test to confirm it is cancerous.
She said she was told that she would be able to start a daily pill if anything new showed up....
She is also doubting what else did they miss out on.
As per her request, this info came from the radiation oncologist and now she would like me to speak to her chemo oncologist.
I've left a message..
Please feel free to put in your input.

Thank you

Re: please help with questions to ask tomorrow

Posted by WestCoastSailor on Jan 14, 2021 10:42 am

Bird‍ 

Thanks so much for the update. There is a reason that some of us said that this disease should be renamed to "Waiting" instead of cancer. I'm glad you have cleared up the confusion and amazed that the oncologist admitted that it was missed earlier. It happens and honesty is the best policy. In my experience after that happens they become extra diligent.

Get out a ruler and have a look at how small 5.2 mm is. That is BB sized. Trying to think of a better analogy. Imagine trying to pick that little thing out of a bowl of jelly filled with berries and other fruit. It is small. And one of the nice things about this cancer (did I just say that?) is that it is usually relatively slow growing.

Good on you for getting answers. They may not have been the ones that you want to hear but they are honest.

So now the question is how are you going to live from now to March. There are lots of posts here about how we live with this chronic disease. Distraction is one way of looking at it. I personally like to be a little more positive and think about the fact that I have this little stay of execution. How am I going to take advantage of it? Exercise, change up my diet, learn to practice meditation, undertake the novel I've been meaning to write... you get my drift.

Again thanks for the update and keep in touch as things progress.

Angus
My story: http://journey.anguspratt.ca

Re: please help with questions to ask tomorrow

Posted by Bird on Jan 14, 2021 11:25 am

hi there,
My co-worker actually took out the ruler yesterday and it's so much better to visualize this. We have to have faith in our oncologist and that they will do their best they can for my mom .  I believe my mom is reassured since I sent her my picture of 5.2mm.
Yes we need to focus on the positive and focus on now and not focus on 'what if's'.
Thank you very much for all your advice.
It is very much appreciated.

Brigitte