Please help me help my dad

[Ckimoo65]

I just registered this last week and I have been trying to make my way through all the posts. It is hard--they are very affecting. So many stories, so many lives.

My dad was just diagnosed with NSCLC IIIA and will be undergoing treatment soon. I am going to be helping my mom and dad through this and I would like suggestions of what to do/ what not to do.

Suggestions, insights--whatever you think might help me help my dad.

Thanks!

Kim

[bware21]

Kim,

The best advice I can give you is to be strong for him and your mother, and to understand and BELIEVE that cancer is not a harbinger of death. In other words, shake off the popular belief and show your parents that there is indeed an action plan you guys can take to ensure that your Dad gets the most appropriate treatment that will lead to his recovery. Finding this board is a great start.

Bill

[bware21]

Also Kim,

You should provide some details about your Dad's condition. This will enable the people on this site to help you.

Bill

[mary colleen]

Hi Kim, and welcome! You will find good assistance and knowledge here. As Bill mentioned, if you can give us some detail on your Dads condition and treatment to date, people here will be able to help you more. Again, welcome, and looking forward to getting to know you. Mary Colleen

[carolhg]

Hi Kim,

The first thing that your dad needs to know is that there are many survivors of stage 3a lung cancer. I was diagnosed with stage 3A lung cancer in 2005. I had 6 weeks of daily radiation and weekly chemo. The radiation takes less than ten minutes each day after your initial first day set up. The chemo was not bad. They give you a lower dose when you are having radiation concurrent with chemo. I never got sick nor did I lose my hair. I had surgery in July 2005. My surgeon removed my upper right lobe and 20 lymph nodes. My pathology report was negative for cancer. I had two more sessions of the same but a stronger dose of chemo after surgery. This time I did lose my hair and felt aches about the second day after infusion and that lasted about three days. I teach high school and I was back at work in September. I am now 58 years old. My scans have been clear since my surgery. This is doable. I was sooooooo scared in the beginning. It is doable. Hope this helps. I will be praying for your dad.

Carol

[ernrol]

Kim,

Welcome to the site. I had Stage III/IV. I have been cancer free since November 2005. Mine may or may not be similar to your dad’s. You should post more info on about your dad’s cancer and expected treatment, but without knowing anything I think a second opinion is allways important to have. Keep us posted.

Stay positive,

Ernie

[nyka69]

Welcome! So sorry you had to find this site.

It's a great idea to have someone accompany dad on his dr. visits. An additional pair of ears is so helpful. Whoever attends these visits should carry a small notepad. The information you receive can be overwhelming so it helps to have notes to refer to.

Encourage second opinions. All concerned will feel better knowing that more than one option has been considered.

Keep a brief journal. Record any symptoms experienced each day along with meds being taken. The docs will have lots of questions. They are easier to answer when you have notes to refer to in black and white.

Visit this site often. The information available here is invaluable. And the folks here can be a great support.

I will be keeping you and your dad in my thoughts.

[Snowflake]

Kim,

My profile is in my signature line.

I think the biggest suggestion I could give is to be sure ALL of the doctors are communicating. If it is advised that your father receive radiation and chemo prior to surgery, BE SURE the surgeon and radiation oncologist are coordinating treatment. Too much radiation and he will not be a candidate for surgery.

I did not have chemo nor radiation prior to my surgery, but I wasn't staged as IIIa prior to surgery. Newer studies have shown a higher "cure" rate with chemo prior to and following surgery. I had radiation.

Be aware that all treatments carry side effects, some long term and some not so long. I believe I can attribute the loss of a gall bladder and thyroid function to treatment. The good news? I've survived. I'm fat and prone to G/I issues if I eat greasy food, but I'm still here to complain about it. I'm almost four years out and so far, am cancer-free.

Welcome to the site, good luck to your father!

[Ckimoo65]

Hi again! Thank-you!

Your replies are very encouraging.

I haven't posted more about my dad's condition yet because we really don't know yet what course will be taken.

My dad is 67 and this is his second time with cancer. The first time around was in February of '04; he was diagnosed with throat cancer. Doc told him to go home and get his affairs in order. My mother is rather tenacious and she wouldn't accept that as an answer. She found him another hospital and a treatment team and he underwent aggressive radiation and chemo for something like 8 weeks.

I wasn't a part of it last time. My parents chose not to tell anyone about it until after the treatment. They felt that his prognosis was so bad that they didn't want to say anything until they could tell for sure that he would live or die.

They also lived 250 miles away at the time so there was a physical distance as well. (They have since moved to the same town I live in!)

The treatment was successful--the cancer was gone. The only challenge has been that his saliva glands are damaged which limits what he can eat.

So, now, lung cancer.

They are considering surgery and some combination of rad and chemo. We are having a meeting next week with the docs to determine what path to take.

Having been through it before, he is not looking forward to what lies ahead.

For myself, I am considering going to a counselor so that I have a safe place to deal with all my “stuff” so that I can be stronger for them.

I don't have anything else going on in my life right now, so I can give them whatever time they need.

Once we know what is going on, I will post more details and beg for more information(!). I know I am going to need support to get through this. And to get my mom and dad through this.

So, thank-you again, and I will post when I have more information.

--Kim

[Connie B]

I had surgery 11 -1/2 years ago. They removed my left lung and 3 lymph nodes. I too was dxd a stage IIIA. or IIIB It's an ify dianosis, Non the less, I did fine during my surgery and I had a wonderful surgeon. He was/is the best.

Stage IIIA & IIIB can all be beatable. These cancers can be beat.

We're here for you. Holler if you need a friend.

Your not in this jouney along. Let us walk the walk with you.

God Bless,.

Connie B

[Welthy]

Welcome and sorry your Dad is going through cancer for the second time.

From a parental perspective, we have handled everything about my husband's illness ourselves. We are both physically and mentally capable, so the ongoing treatments, visits, scans, etc. have always been done by just the two of us. We keep our kids completely in the loop, but we also want them to live their lives as normally as possible. They don't need to have their lives overturned -- we wouldn't want that for them at all! We visit, go out to dinner, they call us, they come here, etc. as any normal family would.

We just don't want Tony's cancer to be this overwhelming, hand-wringing thing in their lives. From the sound of your second post, it looks like your parents are a lot like us. We don't pull any punches with news, be it good or bad.

Our children don't tend to express too much emotionally to us, but I know they have good support systems via other family members, each other, and friends. I think I'm partially responsible for that because I tend to cry very easy (it's a post-menopause thing I've acquired) and they don't want to upset me by talking about deep emotions. They haven't "gotten it" that I get weepy over ANYTHING, be it stupid or not. Tony is not a real deep emotional kind of a guy either, so I think we all follow his lead. (After all, he's a guy! )

That has always been my best advice -- follow your parent's lead. Let them decide the parameters of your involvement, not you deciding for them.

As a daughter, I've been on your end also. As my Mother became more ill over her 2 1/2 years after diagnosis, my Father welcomed more frequent visits. It enabled him to have contact with normality and provided a break for him in his role as caretaker. They waited for my daily phone call and if I was later than 11:00 am, they were on the phone to me. They also realized that all of their children had lives, spouses, and children to be responsible for.

So I guess we are repeating the pattern because it works for us.

Good luck and let us know what the treatment plan will be.

Welthy (who always ends up being such a windbag! )

[Nick C]

Listen to him and support him.

Make sure his decisions are well informed.

Have him tape any conversations with doctors if you can't be there...this way you can help translate...because often times it's very overwhelming and confusing while in the dr office.

I'll pray for you all.

[kreed70]

Hi Kim~

Welcome to the best support- ever!!

Great that you have a tenacious mother! You sound very on the ball as well!

It's great that you don't have a lot going on right now and can help them BUT you must take time for yourself and continue to have a life separate from them and LC. Trust me on this one!

Also, seeing a counselor and/or a caregiver support group can be very helpful!

Keep us posted! Good thoughts and prayers with you!

Kelly

[Ckimoo65]

We met with a surgeon today to discuss that particular option.

And I got a little more info on what kind of cancer it is--adenocarcinoma--tumore less than 3 cm, with lymph node involvement on the same side as the tumor.

The surgeon said that it is possible for lymph nodes to light up on the PET scan without actually being involved. He said a mediastinoscopy could be done to sample the nodes to determine this. But, even with that invasive procedure they might not get anything and it would be inconclusive.

The doc said that while they could take the tumor out, if the lymph nodes are involved then the cure rate is very low regardless of the surgery.

This hit my dad considerably hard--he might as well have punched him in the gut.

Not happy!

That mood constrasted with the chirpy appointment secretary.

They scheduled him for some breathing tests (?) and a follow up.

Tomorrow we go to see the oncologist. My dad thinks that he will get better news, or at least similar news with a little better attitude.

He reminded me that when he originally found he had Stage IV throat cancer 2 years ago, they gave him a 40% chance--he switched doctors/hospital and the new docs said that if the other folks could only give him a 40% chance then they were still working in the early 90's because these new guys had gotten it up to 70%.

So, with tomorrow's visit we will begin to decide what path to take for treatment. And if surgery will be included in that treatment.

I would appreciate any experience that folks have had with mediastinoscopy, having an upper lobe removed--what was the surgery like, recovery time, etc.

I am concerned about the surgery. I am wondering if the energy expended to recovery would be better spent enduring the chemo and radiation. Especially since statistically the surgery might not make that much of a difference in the long run.

Sorry, for all the questions. We're still pretty new at this and so far things are working out. I took notes on my laptop during the visit and helped to ask a lot of questions. The one thing I did not like about the surgeon is that towards the end of the visit he seemed to be addressing me more than my dad--that bothered me a lot.

Thanks again for all the responses so far--very helpful!

Peace!

Kim

[recce101]

[Ckimoo65] The doc said that while they could take the tumor out, if the lymph nodes are involved then the cure rate is very low regardless of the surgery. This hit my dad considerably hard--he might as well have punched him in the gut.

Oh, boy! These doctors should really be more careful with their choice of words. The fact that a condition is "incurable" (if that's actually the case) does NOT mean a person is going to DIE from it! No way! I have the same issue with their careless use of the word "inoperable." Heck, I've got several things wrong with me that are inoperable and incurable (including the same type of cancer as your dad), but I don't expect to die from any of them.

This is a really hot-button issue with me, as most in the group already know, so instead of continuing my rant on company time I'll send you a PM with a few more thoughts on the subject -- click the My Mail link at the top.

I think you guys will be just fine. My best wishes and Aloha,

Ned