Need advice for finding stepfather treatment

[HiyaDoinne]

My step father has recently found out he has stage 3 adenocarcinoma of the lungs.He has been to Vanderbilt for a evaluation and they don't believe surgery is an option due to it being around the heart.He will find out for sure in a few days.MD Anderson cant see him until September 16.Vanderbilt said he needs 3 months of radiation and weekly chemo but feels he should start it soon.He would like 2nd op.Does anyone have advice or know of a treatment facility where he can get 2nd opinion sooner?

[Tom Galli]

I've read good things about Vanderbilt-Ingram Cancer Center.  Assuming a Vandy-Ingram thoracic surgeon declined to operate, might you get a second opinion from a different thoracic surgeon associated with Vandy.  MD Anderson consult in three weeks is fast.  I live in Texas and many local survivors have waited months to be seen at Anderson.  

 

Assume he's had a biopsy and type of adenocarcinoma (non small cell?) is known.  Also assume from your post the tumor is confined to a single location, so stage 3A.  I think what is doctors are saying by recommending radiation and adjunct chemotherapy is they want to keep the single tumor from metastasizing to another location (second lung, lymphatic system, other organs).

 

I can't suggest a better treatment center than Vanderbilt-Ingram in Tennessee.    

[HiyaDoinne]

Thanks for your reply Tom Galli.He does have nsclc.He has a 2.8 by 3.2 cm lesion on the right upper lobe of the rightlung.He has several spots close to his heart but I don't know if this means its metastized or not.Does it? My concern with md anderson had to do with did he need to wait that long for his treatment to start?He is coughing much more and looks like he has lost 10-15 pounds.Vandy said he needed to start soon but were fine with him getting a second op.We live in north Al and UAB is another option.What do you think?I know you can only give an opinion but I have no knowledge and don't know how urgent this may be.Thanks again for your help.This seems like such a great support group.I am trying to learn as much as I can.

[Tom Galli]

I can't give a medical opinion; I'm a patient not a doctor.  I can also only offer an opinion based on my experience.  Given that understanding, I would suggest a focus on finding a medical oncologist your step father trusts and is comfortable with.  I don't know if his disease is metastatic or not (the spots close to his heart are presumably in or on his lung) but it is late stage disease and if surgeons have declined to operate, then a medical oncologist becomes the quarterback of your step father's treatment team.  

 

One more thing is relevant.  If surgery and radiation are ruled out, then your step father will likely receive a type of chemotherapy that is called "the standard of care". This is a National Cancer Institute endorsed formulation that almost everyone with your step father's stage and type of cancer will receive.  If this is the case, then where the chemotherapy infusion occurs is almost immaterial.  So if your step father found a medical oncologist in the Huntsville area he was comfortable with, and the doctor practiced at a small clinic, he'd receive exactly the same formulation that he'd receive at MD Anderson. Important to understand is this first series of treatments is called first line treatment.  If first line treatment arrests his disease then celebrate, but it often doesn't.  

 

When it doesn't, second and third line treatments depend more on the skill and intuition of the medical oncologist rather than a standard of care.  This is when you might consider obtaining treatment at a well known cancer treatment center.  Moreover, sometimes experimental treatments emerge and your step father may benefit from such a treatment.  Again these are found at larger cancer treatment centers.  

 

So, if surgery and conventional radiation with adjunct chemotherapy are ruled out by his doctors now, then I suggest finding a medical oncologist your step father trusts and is comfortable with.  I found mine through my General Practitioner.  A doctor close to home also holds the advantage of having family to help him through chemotherapy.  He'll need help because side effects can be a challenge.  I've attached "Ten Steps to Surviving Lung Cancer" that I wrote years ago.  Some of this information may be helpful.

 

Stay the course.

 

Tom

 

 

[HiyaDoinne]

Thanks for the Information Tom.I have had trouble getting logged in and was told I could not reply but was able to get on tonite.Excellent article on 10 steps to surviving lung cancer.Great idea to have yearly ct scan.My stepfatheris a retired engineer from 3M and has been around chemicals for over 30 years.

He got a call from Vandy yesterday after the treatment team met.I will be taking him up next week so they can biopsy the spots I told you about that were close to his heart.They want to make sure the spots are not an infection.The lesion he has is adenocarcinoma.He has decided to use Dr.York at Vandy.He will be getting chemo once a week and radiation for 3 months here in Decatur Al where we live thru Cancer treatment centers of America.I am thankful they are doing this in our hometown because like you said,he can have some bad side effects.Thanks for all the info you have given me and I will let you know how things go.I am going to encourage him to get in a lung cancer support group.I told him about the redtoenail.He is wanting to get support and encouragement from others who have been down this road.

[Tom Galli]

Sounds like things are headed in the right direction.

 

Now for some challenges down the treatment road.  Your encouragement about joining a support group is spot on.  The radiation and chemo will physically wear him down but the pondering of the possible consequences of his disease combined with treatment debilitation will test his (anyones) coping skills.  No one is prepared for this and he needs to get to a place where he can share his experiences and frustrations with people going through the same process.

 

Blogging for me was a way I could share my feelings and relieve stress.  But joining an on line support forum like Lungevity has an additional benefit of experiencing lung cancer from the patient prospective.  Although we may have different variations of the same disease, lung cancer patients have much in common when it comes to treatment, side effects, and life after treatment.  

 

Your interest in his treatment and outcome suggests you are a caregiver and I encourage you to stay in touch as he progresses through treatment. Ensure you are familiar with all the resources of the LUNGevity Foundation (www.lungevity.org).  

 

Someone will always be here to address your questions.

 

Stay the course.

 

Tom

[RandyW]

you need to be proactive on the weight loss..... Loss of muscle mas also comes into play and this is called Cachexia.... not good.. best thing is foods with extra protein.. Smoothies with yogurt and milk and veggies and some muscle vuilding protein powder are good ideas for him!!! some weight loss is good but not a lot at a time!!! we have lots of great ideas in the nutritional Recipe forums also.

[HiyaDoinne]

Thanks Tom Galli and Randy W for the information and support.I hope he joins this group soon because I know it will help him.I will continue to post and update and learn everything I can about the resources lungevity has to offer.Thanks again.Take Care.

[RandyW]

take a look in the inspiration and good news forums for some pick me up good news postings about this disease... positive aitude and fighting energy are important!!!