Stage IV diagnosis- questions to ask the oncologist at the beginning??

Posted By
7/13/2011 1:51am
View other posts by
Activity
Replies: 5

Hey everyone,

 

My father in law was just diagnosed with Stage IV melanoma by an oncologist in a small town in Idaho. This oncologist is not a melanoma specialist and seems to have missed some of the big steps in the process- they have no idea where the origin of the cancer is but they know that the tumor in his shoulder isnt the origin. Also they have only done a PET scan- no other tests and they are telling him that they are going to recommend Yervoy but just to wait to see if his insurance will cover it, etc,.

Anyways my uncle is a Stage IV melanoma survivor after IL-2 at Roswell and my aunt has suggested that the first thing he needs to do is get a second opinion from a melanoma specialist in a big city so we are looking for doctors in Southern CA where we live for him to see. Right now we are looking at Dr. O'Day at the Angeles clinic and Dr. McClay at Pacific Oncology but if anyone has any other recommendations for melanoma specialists we would really appreciate it.

 

Also we really are at the start of this whole thing and my uncle's cancer treatment was 10 years ago so if anyone can give us some of the questions we should be asking at the specialists office or anything we should be expecting?  Any info would be very helpful

 

Thanks!

 

Julie

It sounds like that oncologist is more or less on the ball but at Stage IV, your father-in-law also needs an opinion from a melanoma specialist. Also, these specialists can let you know if he qualifies for a clinical trial, which would give him more treatment options. 

Linda

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

Welcome to our forum. There are some questions that need to be answered before one can
decide on the treatment options that could be suitable for your father in law. Has he had
a biopsy of the tumour on his shoulder? If so, what did the pathology report say about it,
especially its depth? What where the results of the PET scan?

It is good that you are trying to find a melanoma specialist for him. I hope that other
people will give you some suggestions about any specialists in your area.

If you can get the answers to the above questions, then we will have a good idea of what
needs to happen next. As he hasn't had a CT scan yet, then this will probably need to be
done very soon to confirm anything that the PET scan has picked up.

Hope this helps.

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

I am sorry to hear about your father-in-law.   There a lot of questions regarding treatment options, and they will depend on his tumor burden and general health.  I would ask to get the tumor tested for B-RAF, as IPI (Yervoy) does take time to kick in (this is where tumor burden applies), and the B-RAF drug has quicker results and less side effects if you are a responder.  Also, ask if he may be a candidate for IL-2. Some hospitals may not recommend it if it's not offered at their facility and choose Yervoy instead. 

I am so glad to hear about your uncle - my husband is going to Roswell for screening to see if he qualifies for IL-2  (stress test, brain MRI, PET scan).  It is so good to hear of long time survivors out there after doing IL-2.  I am going to copy your post and send it to my husband...maybe it will ease his mind (a little).

As for doctors, we are on the East Coast, but I am sure somebody will chime in.  However, if the doc is on "extended leave", make sure that the doctor you are seeing is also a mel specialist.  If not, I would consider switching.

Best wishes, and keep us posted on how he is doing. 

Maria

Julie,

I also agree that your fil needs to see a melanoma specialist. Once he has the second opinon they usually are great working with local Doctors. When you find the specialist it will save time if your ready with copies of all scans both in dvd form of the PET and a copy of the report. When you transfer to a major institution they reread all scans themselves and they will also request slides from the pathology to reread.  That's one way you get your second opinion on everything.

From everything that's been posted, Dr. O'Day has taken an indefinite leave of absence. Since you are on a time crunch I would bypass him as a thought.  They will need to test for gene mutations since his primary is unknown. Most of those treatments though are secondary.  Has he had surgery to remove this shoulder tumor? Is it his only one?  If it's already been removed and there are no other signs of cancer it puts him into an entirely different grouping of treatment. Yervoy is not appoved with no evidence of disease to watch. So a little more info would be helpful.

At this point he might want to request a brain mri. Just to make sure that area is clear. Otherwise if the PET/CT is clear most likely no other tests will be ordered except for testing tumor tissue to see about the mutations. Also ask for blood work to determine his HLA factor. That's used in some of the trials.

I go to a mel specialist and have been going for years. Just recently I have started having recurrances more often. The first line of attack that my Dr wants  is Yervoy.  I am positive for Braf but for now until they find a lasting combo of drugs I'm putting that option off.  If your fil goes on Yervoy make sure that his local onc is well versed on the side effects! Maybe the specialist would work with him on that. If not managed properly serious side effects could be mistreated and cause major issues. Do a search on Yervoy and you will be able to get to the direction sheet that will list possibilities.

I'm wondering why he is stage IV if their is only one area involved and they don't know the primary.  Just a thought?  We have several on the board who have had unknown primaries. Sometimes something was removed earlier in life and misdiagnosed. Sometimes a site has regressed but a few cells were missed. Sometimes it could have been a mucosal site and did not start on the body but in it. That's why the tests need to be done for the mutations.

I'm sorry you've had to join us but hopefully we will be able to guide you if we can. Remember that we are patients or caregivers and not medical Doctors.

Linda

Stage IV 5 years

If you want to look closer to home, Huntman Cancer Institute in Salt Lake City is a designated comprehensive cancer center by the National Cancer Institute.  They have melanoma specialists there.

You mentioned Dr. O'Day but if you look at a message just a couple below, he is on extended leave.  However, he does has other melanoma specialists covering his cases.

Best wishes,

Janner