first oncologist appt

[3rsandahug]

My mom found out last Friday that she has lung cancer. It was just a brief phone call from her pulmonologist with results from her biopsy, so we still have many questions unanswered (like whether the lymph node he biopsied tested postive for cancer, etc.) He told her that based on the location of the cancer, he was calling it stage III. And that's all we know so far.

She has her first appt with the oncologist on Thursday. Of course, we all have questions for the doctor, but I thought I'd ask for some advice from you all. Are there questions you wish you would have asked (or are glad you asked) at your first appt? My friend whose mom is dealing with cancer told me last night that mom should have someone else go with her to help remember what is said. Any other suggestions on how to handle this appt?

Thanks a million! I'm so thankful I found this support community.

Karen

[ginnyde]

Karen,

Absolutely, someone should go with her. Maybe even take a tape recorder because it is tough to remember everything the Dr. says. Also, a good idea to write down your questions before you go and check them off as they are answered. Don't want any 'Wish I hads' when you get home.

[SandraL]

Hi Karen. Presumably you will be discussing treatment options at this first appointment and it is so important to have a thorough discussion about that. Make sure you ask what all the options are, and the pros and cons of each. And the impact of any current decisions on future options. If surgery has been dismissed make sure you understand why now so you are not left wondering later. If the chemo/radiation combo is not suggested make sure you understand why.

And I think one of the most important things at a first meeting is to decide whether or not you would like to hear any prognosis information. I would suggest that you do not, as none of us are statistics, we are all individuals and hearing that information can have a significant negative impact on your mental attitude for the fight ahead. If you do not wish to hear them, make sure up front that your doctor is aware of that. I was told by a very smart nurse, do not ask for what you do not want to hear. Very wise words.

Do not be afraid of that 1st appt. I was terrified as wondered if they were going to be able to help me at all. And of course they can and they will be able to help your mom as well. I am sure you will find a clinic full of very kind staff and professionals and that hopefully you will feel better walking out of it then when you walked in.

I hope all goes well.

Sandra

[3rsandahug]

Great suggestions. I would not have even thought to not ask about the prognosis, but it makes a lot of sense. Thanks so much!

Karen

[Caren]

When my dad has his 1st Oncology appointment he had decided that he wanted to know the prognosis and I wanted to know too. I don't know why, I think it made us feel that knowing that, we would somehow be in control.

I wish now that we hadn't asked b/c life for us is like a clock ticking and wondering when he's going to deteriorate and how rapidly this will take him in the end......my dad spent the last 8 weeks sitting and waiting to die and it took strong words from me last week to finally get him to 'live while he's alive' ............

Knowing the prognosis is entirely up to the individual and their families but please remember that it is only statistical figures and things happen with different people at different times.

Take Care and good luck!!

[Barb73]

I am sure that your Mom will receive much support and the fact that you are forearmed with the wonderful suggestions from the posts above, you will be in good stead.

When my husband was diagnosed with Stage IIIB adenocarcinoma/inoperable, we were told by our oncologist that Bill could live with this and it would be treated as a chronic.

Of course, the doctor added the caveat, "But, he could eventually die from this."

We all know about statistics. They are numbers. We are humans.

There are lies. There are damned lies, and there are statistics. They can be manipulated any which way desired, and many studies do not take into account the general health of the patient.

Hope I don't sound too matter-of-fact. I am at this at what will be 4 years on Dec. 4 or so, and haven't lost hope.

I remember what Dave Grant (Co Founder of LCA), a five-year lung cancer survivor, said about what to hold onto: Attitude, Spirituality, Support and Hope.

Wishing you and your Mom all the very best.

Barbara

[fillise]

So sorry you are now having to walk this journey with your mom, but glad you found us. The diagnosis can ber overwhelming so ask your oncologist anything you need to. Don't be surprised if he/she doesn't want to start treatment right away, but wants to do some more tests. They may want to do additional scans to make sure it hasn't spread anywhere else. That's ok as long as the scans are done fairly quickly. Ask about treatment options, side effects, etc.

You can go to www.cancergrace.org to read information from oncologists and radiologists about the different treatment options for each stage.

DO take a tape recorder or something to write with and DO ask for copies of her reports.

My mom had never asked for a prognosis and I'm glad she didn't. Mom is Stage IV, but is going on 22 months now since her diagnosis. Her oncolgoist is managing this as a chronis disease and so far so good. She is undergoing her second set of chemo treatments now to put her disease back "to sleep" as he calls it. She went 12 full months off all treatments after her first set of chemo treatments.

Hang in there and ask any questions you need to. Ask here as well. We've got lots of experience that we are happy to share.

Susan

[3rsandahug]

Thank you all again for your support & helpful thoughts. Mom's oncologist told them that she does have NSCLC, which encourages us to know that it's the less aggressive and slow-growing form of LC. She has a PET scan scheduled for Wed and a follow-up next Monday. I plan to head down to OK to be with her for that appt (I live in CO) and stay for a couple of weeks. We'll see what treatment options there are soon.

Karen

[MsC1210]

Karen

Please know my thoughts will be with you. Have a safe trip and let us know how things go.

Hugs

Christine

[SandraL]

Hi Karen. It is good to hear that things are moving along and that she is getting all the right tests done. Hopefully a treatment plan can fall into place shortly after that. Take care

Sandra

[recce101]

Hi, Karen:

I absolutely agree with the others about not asking for prognosis statistics. It's not because you want to hide from the truth, but because any number that might be quoted is simply an average/mean for a very large group of people with a similar diagnosis in the past, and that number is essentially meaningless for any individual patient.

One question you can ask is what subtype of NSCLC your mom has. The most common form of NSCLC is adenocarcinoma, next is squamous cell carcinoma, and least common is large cell carcinoma. The subtype has some bearing on the specific chemo drugs to be used, and that will help us answer any questions you may have about the treatment plan.

Most imaging centers will provide the patient a CD of the day's exam upon request, and I recommend you take advantage of the offer. It takes only a few minutes, and these CDs will come in handy in the event of a second opinion sometime in the future. Likewise, you should ask the onc for copies of any written reports (scans, pathology, etc.) in your mom's file.

Best wishes and Aloha,

Ned

[jaminkw]

Hi Karen, wishing your mom and all your family the best as you move forward in this difficult journey. I can only add two things to the great comments above--HOPE AND ENCOURAGEMENT. I was dx'd stage IIIb Oct 07 and more than a year later I have no visible evidence (re PET and CTs) of disease for going on eight months.

Positive thoughts and energy your way, Judy in Key West