Jump to content

Starting on the journey (more like into the abyss)


kdaru

Recommended Posts

Saw an onc for the first time last Friday. He told us that b/c there were 3 lung lesions, it qualified as metastatic, and was thus stage IV. Shock to my Dad, he'd figured himself for stage I. Then he said my Dad wasn't even a candidate for radiation, becasue the field would be too big and too much of the lungs would be involved. Shock to me - I'd hoped Dad would have a shot at concurrent RT and chemo at least, even if he wasn't a surgical candidate.

They're setting us up for a head CT tomorrow to check for brain mets (Dad has a pacemaker, can't do MRI), and planning a course of chemo with carboplatin/Taxol. Dad still feels great, thankfully. I'm hoping that maybe the chemo will kick it's butt, get rid of some of the hot spots, and make my Dad a candidate for XRT or surgery. We're going to see a rad onc tomorrow anyway, at my insistence - if Dad's not a candidate I want to hear it from the horse's mouth. I would like to talk with a surgeon too, just to find out what's out there.

Hard to tell how he's taking it, he doesn't show a lot of emotion generally. Some days I'm doing good, do a lot of research; other days I just can't face it, and shop or watch TV instead. A couple of times he's said he's not sure about going through with the chemo: he's feeling great, so why? He's talking like he thinks he can coexist with this cancer for several years even without treatment. Myself, I don't think so; I'm afraid that if we do nothing, we'll miss our chance and regret it later. I thought about quoting the average survival time for untreated stage IV, but he can surf the web as well as I can, so I figure if he doesn't know he doesn't want to know.

Sorry for the ramble, I'm still new at this. Any thoughts?

Link to comment
Share on other sites

Hi

I think its great that you are checking and double-checking all your options. I know there was one case on this board of a patient who was initially diagnosed as stage IV, and it turned out to be (I think) two different types of lung cancer, both early stage. Anyway, she ended up being a surgical candidate - thank goodness they didn't just settle for the first opinion!! Obviously this is relatively rare, but you never know!!

My Mum was asymptomatic at diagnosis over 15 months ago, and remains so. She has had pretty rigorous chemo, and has tolerated it very well. My recommendation to anyone who is in relatively good health is to have a go at it - if you find the side-effects intolerable, you can always stop treatment. Just my opinion.

Whatever your father decides, I wish him well. He is lucky to have you for an advocate. Keep up the good work!!

Karen

Link to comment
Share on other sites

Hi Kdaru,

Welcome and sorry to hear about your dad. It's hard to take everything in at first for sure. Perfectly understandable how you and your father feel. Speaking only for my self I would do some type of treatment. What ever was available. Never know what will happen. They have come a long way with chemo and medications to offset any side effects. Of course everyone is different and reacts differently to treatment. Any decision your father makes should be respected. It is up to him. I've said from day one I was going to beat this and still feel this way to this day. But it's not going to go away by itself unless one does something about it. Take it one step at a time and one day at a time. Stay positive and focused. Learn as much as you can. Seeking a second opinion never hurts. Weigh all your options. Be pro-active. Hope this helps, My thoughts and prayers are with the both of you for the best of results. Peace, take care and God Bless.

Rich

Link to comment
Share on other sites

Hi Katie,

Sounds like you and your dad are off to a great beginning as far as getting your ducks in a row. And as far as getting the info straight from the horses mouth..that's the only way to go. ...in fact, see two or three "horses" if you have to! And always go armed with as many questions and as much information as possible.

In my case, our medical staff tended to cross all "T"'s and dot all "I"'s because they knew that I knew...and that I was making sure my dad received the best care possible of all options that were available. They were great. Being a strong advocate makes a big difference!

I also think a positive attitude and hope play a huge part in surviving this disease. We're here for you as you begin the journey no one wishes to travel. There are alot of survivors here and your dad could very well be one soon too!

Keep us updated.

Prayers for your dads health and for your strength~

Link to comment
Share on other sites

It sounds as if you are on the right track.

When he goes to the appointments that you set up for him, hopefully, the doctors will address the "do nothing" part, and that will take the burden off you.

It is a gift to him to have you in his corner. And it is our gift to each other to come here for support. Thanks for posting, and keep coming back.

Cindi o'h

Link to comment
Share on other sites

I just wanted to say welcome to the group. I am sorry that you had to come looking for us.Come visit us often. We will laugh with you or cry with you; whichever you need. If you want to scream, yell or just vent, we will let you do that also.

There are plenty of people here who have beaten the odds. Whatever you need you will find it here. Come share a laugh with us in the Just For Laughs Forum. A good laugh will always make you feel better. We Chat on Tuesday and Wednesday...and any other time you need to. It is from 9 PM untill ??? EST.

Does your dad have access to a computer? Perhaps he might like to join us. He will feel better about it. If not perhaps you can print some of the threads out for him.

Either way, once again welcome.

Link to comment
Share on other sites

Katie,

Your dad is probably still in a bit of shock. I posted a sticky in the newcomer forum regarding the thought process with diagnosis if you would like to read it...

The news is enough to knock someone on their fanny, to say the least. When his brain becomes less numb, I'm sure he'll be open to suggestions and other opinions, but for a while, he's shell-shocked and won't hear much of anything you say...

After that initial numbness wears off, he should decide to do what needs to be done to take care of business. Remember, you can suggest things, but ultimately, the choice is his. He may not choose to do anything medically to fight this beast...you can try to change his mind, but beyond that, it's up to him. Either way, he will need your support.

Hope it all comes out right in the end,

Becky

Link to comment
Share on other sites

My suggestion is that you find another Medical Oncologist...one who is more interested in helping your Father. I shared a room in the hospital with a lady who was in her mid 70s, who had a pacemaker. She had had an upper lung Lobectomy and lower lung wedge resections. She ran circles around me as far as recovery goes. (When things were rough I would tell myself "...if she can to this I can do this.)

Has your Father had Pulmonary Function Tests to determine how well he would do if part of the lung were removed?

Have you checked into Radio Frequency Ablation to the three lung tumors?

Please don't accept that there is nothing much that can be done, especially if this attitude is based upon your Father's age. Not a good enough reason to not treat aggressively if that is what your Father wants.

Good luck and best wishes. If you tell us where you are maybe we come up with some names of other docs and other cancer centers that might be more inclined to work harder for your Dad.

Link to comment
Share on other sites

I agree with Karen and Fay.

As Karen pointed out, maybe all the lesions are not the same type or maybe not all malignant. Has a biopsy and/or PET scan been done?

Fay also has a good point about RFA. Something to check out it might not be possible but you won't know unless you find ask a qualified doc

If he doesnt smoke it may be BAC this *tends* to stay in the lungs, but I think it may look different than lesions on a scan - Not positive about this.

Non-smokers sometimes respond very well to Iressa and maybe Tarceva.

Multiple lung nodules are more common in metastasis to the lungs (so it might not be the primary)

Multiple pulmonary nodules are most commonly encountered in patients with metastatic disease to the lungs. Other less commonly encountered diseases that present as multiple pulmonary nodules include infections, arteriovenous malformations, Wegener's granulomatosis, and lymphoma. The evaluation and management of the patient with multiple pulmonary nodules are usually guided by the history, physical examination, and laboratory findings.

Link to comment
Share on other sites

Hi Katie and WELCOME!

I'm so sorry that you are having to deal with this monster, but I sure am glad you found this website. There are people here who will do everything they can to help you.

I agree with the others here that, if you have given us all the info, a second opinion sounds like a very good idea. Are the 3 lung lesions in the same lung? If they are, it's my understanding that would not be considered stage iv. Do you know the size of the lesions? I have heard of several who were not able to have radiation because of the location of the tumors, but again, that's a decision that would definitely warrant a second opinion. I'm glad to hear that you are getting a second opinion from the radiation onc.

Best of luck and please keep us posted.

God bless you,

Peggy

Link to comment
Share on other sites

Katie

So sorry to hear about your Dad's dx, this is the right place to ask for support and advice. They are all the nicest and most compassionate people I have ever come accross.

Best wishes

Hi Dr Joe

Thank-you very much for the time and interest you show in this board it is greatly appreciated. I always look for your posts because they alway seem to clarify areas I don't understand.

Could you expand on your above comments about RFA for this.

I would like to understand your reasons for saying this and some context for this.

Also I have a query. In the UK on TV they recently had a programme showing a breast cancer sugery. In it the women in question had 4 tumors 2 in both breasts. The surgeon didn't say oh she's stage IV, just she must have some inbuilt weakness which means she grows tumors in her breasts. Is it not possible that someone could have a similar weakness in their lung, causing more than one tumor?

Thanks

Sarah

Link to comment
Share on other sites

Hi Katie,

I'm sorry to hear your Dad is having such a hard time finding care that you feel is appropriate for him. I'm new at this too, and it's a very scary time for us with the "beast" and our family members and loved ones.

Please get a second opinion. My first Dr.s scared me to death... made it sound like I was on my death bed and that I couldn't survive surgery, that NSCLC was not treatable, and I needed to talk to my Maker and look at clinical trials.

I referred myself to another Dr and he made all the difference.. I am a canidate for surgery, I just had to build up my lungs. So get another opinion, it can change the whole scope of things for him and you. I wish you the best and will keep you and your Dad in my prayers.

Hugs and prayers,

Paula

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.