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Topic Parkinson's with possible lung cancer Go to previous topic Go to next topic Go to higher level

By Lynnie2 On 2014.12.30 08:06
Hi,
My husband who was diagnosed 7 years ago with PD is now facing possible lung cancer.
I've written a blog about the Swallowing assessment and going to the hospital because of pains in his stomach and after taking x-ray's and ultra sound because of a continuous cough, they discovered a large mass on his lung.
He's undergone a CT scan, pulmonary function breathing test, PET scan
and just before Christmas a Bronchoscopy, which is a tube that goes down the throat to check the possible cancer in the lymph nodes.
That was the worse for him and the after affects from the sedative caused some concern but he is okay now.
He is under the care of a Thoracic Surgeon and a cancer program, where
2 navigational nurses help the family with appointments and concerns.
The Thoracic surgeon ordered the above tests and yesterday the nurse called and said that they didn't get the needed results from the Bronchoscopy so he is to go ahead with the scheduled Lung Biopsy on Friday.
The large mass was discovered the first week of November so things have been going fast. The lung biopsy is being done close to home, but if we waited to go to the same hospital as the specialist, it would have been in mid Feb. which is too late.
After the Bronchoscopy the doctor didn't think the lymph nodes were cancerous but the biopsy would confirm that, so I think that is a good thing if that is what the nurse was trying to say. Lymph cancer is another story according to the specialist, so I am assuming that it was negative, but we'll hear for sure in the follow up appt.
In the meantime they will do the needle biopsy of the lung to see what kind of cancer is involved, whether it's fast growing, etc.
He hadn't had an x-ray for 7 years, as there was no need, and he smoked 25 years ago, but on the last x-ray, there wasn't anything showing, so we don't know when it developed, but it's a 2 1/4 inch mass.
It will likely be removed down the line as my husband still has the cough.
One step at a time, they say, and don't get your thoughts ahead of yourself and worry but it's hard not to worry..........
We need everyones prayers, even if we don't know each other. I believe that prayer can help, and it doesn't hurt, so hopefully you guys out there reading this blog will put us in your thoughts.
Thanks so much.
Lynn

By jaxrock On 2014.12.30 08:40
Lynn, you and your husband will be in my prayers.............
What a difficult time you're both going through.
A situation like this takes over your life....and it's overwhelming.
Be sure you take care of yourself...it's more important than ever...
Wishing for the best possible outcome...

By makrivah On 2014.12.30 09:31
My prayers are with you.

By mylove On 2014.12.30 09:36
Of course, we are absolutely praying for you. Please take good care of yourself through all this and keep us posted. (((Hug)))

By LOHENGR1N On 2014.12.30 23:50
Lynnie, you and your husband are both in our thoughts, hearts and prayers.

By lurkingforacure On 2014.12.31 13:26
I can't imagine having to handle anything else, much less cancer, in addition to PD. We are praying for you and your husband.

By jcoff012 On 2014.12.31 16:10
Lynnie, I posted on another thread. We all are with you. We don't need to be friends in the same room to be there beside you in spirit. We are all in these fights together.

You are right, waiting for test results is by far the worst part of any cancer journey. It truly seems like all you have is an endless amount of tests, blood draws, waiting between appointments...Then the results. What next? All you can do is take it one step at a time, one appointment at a time.

Looking back, I wonder if being completely blindsided as I was is more difficult than having to anticipate results, as you have to do. But, you know something? It doesn't matter when or how you are told. It is difficult to face, either way.

Remember, you have faced PD, so you can face this. We all hope this is not cancer. You certainly have enough on your plate with just the PD! But, you are strong and you are smart to reach out. Please let others in. When you need to talk to someone, we are here. We don't always need to give advice. Sometimes we will just listen...and hold your virtual hand as you face this Friday and whatever may come.

Hugs and love from all of us. Jane

By Lynnie2 On 2015.01.04 08:01
My husband had his lung biopsy this past Friday and it went well.
It wasn't as complicated as the Bronchoscopy, just a little uncomfortable when he had to be in an awkward position for the needle to go into the lungs. They froze the area where the needle/wire was inserted. He had to remain still so they could get the tissue the first time. If he moved then they would have to go in a second time. I told them he had PD so they said they would do their best.
He was out of the biopsy room within 30 minutes. He said he remained still, so that was a good thing.
We had our own little cubicle in the diagnostic department and it was a full day for that department even though it was just after the New Year.
He had to lay on the bed for about 4 hours for observation and they brought up some lunch and I had my lunch pail so we ate together. He wasn't suppose to get up at all during that time. They were watching for possible bleeding and collapsed lung, but everything was okay. They had to tell us the risks before going into the procedure, so that was scary. If the lung did collapse, he would be taken to ER and a tube inserted and he would stay in hospital until it was okay. Anyway, it didn't happen.
He didn't stay the full 4 hours, so after approx. 3 hours he was released.
He wasn't suppose to lift anything for 48 hours and there could be blood in the sputum (which is normal), but that didn't happen.
I was suppose to look at the incision the following day and if it looked like it was healing, then take the band aid off but not to take hot showers or soak in a tub.
I looked on Sat. and it wasn't quite healed, so put another band aid on it.
It looked better last night so will probably take the band aid off today.
I was so very tired yesterday and had a few naps and went to bed early. I guess things were catching up on me.
My husband feels okay and just his usual self. He just sleeps a lot which is normal, but it seems it's getting worse.
We see the MDS this week too.
I don't feel like going to church today and besides it's a rainy, miserable cold day.
We usually go to church every Sunday, so they can forgive us today.
We get results about both biopsies in 11 days, so we hope for the best.

By Lynnie2 On 2015.01.16 07:35
Hi,
We went for the results yesterday and my husband has lung cancer. It said it was Adenocarcinomas which is a non-small cell lung cancer. That is the less serious, compared to the fast growing.
The lymph nodes were okay or negative, so that is a good thing.
He recommended removal of the lower lobe. It called Video Assisted Thoracic Surgery or VATS lobectomy. They go in with a camera.
There would not be any chemo afterwards so that is a good thing and the recovery is about 3 weeks, but in his case it could be more. .
I didn't ask why they just don't remove the mass, but I was thinking that maybe they wouldn't know if they got the entire mass, so the removal of part of the lung would be better. I thought the lower right lobe was a better place for the mass because the lobe was smaller, but he said no. The right lung has 3 lobes and the lower lobe looks small at the front, but goes around to the back so it's larger. The middle lobe is smaller.
At least it isn't on the left lung where the heart is located.

I asked if he thinks that my husband would be okay with removing it. He thought he could handle it. My husband said they have to do what they have to do and he was okay with the surgery.
The doctor said he did some research on PWP and lung cancer. There is something about lung cancer, but he didn't know if Parkinson's was the cause.
I think the lungs could be affected at a later stage of Parkinson's because of stiffness and cause breathing problems, but I don't think Parkinson's would cause cancer.
My husband smoked for 25 years but quit 25 years ago, so I tend to think it is from smoking.
Anyway, my husband is okay with removal and we signed the consent forms. We have to wait for pre-admission appointment where they take blood tests and his history, meds, etc. and see the antithesis and then if things are okay, the surgery will be booked.
I tried to ask as many questions as I could.
We had to cancel an appointment with the MDS last week and rescheduled for Jan. 27. This specialist knows that my husband was going for tests and possible lung cancer. We haven't been able to discuss anything since then, but he said we should go ahead with the tests, so I hope he thinks my husband will be okay with the surgery.
The surgeon said that he would have a better quality of life. If my husband was much older (he only 66) and lived his life, then maybe they wouldn't recommend surgery
He doesn't recommend radiation because of the size of the mass.
Who knows, maybe the fatigue my husband has had over the years is part of the lung cancer. Wouldn't it great if he felt so much better afterwards?
I think the doctor's tend to think all symptoms a PWY has is related to Parkinson's. In the beginning the MDS thought his coughing was related to swallowing, so recommended an assessment (which I explained earlier).
No x-ray were taken since 2007, so there you go............
They only problem is that it's the winter month sand snow storms come up. We'll just have to watch the forecast and maybe stay at a motel if necessary.
I will definitely stay at a motel across from the hospital during the surgery and days in the hospital which is 3-4 days.
Maybe you think we made a hasty decisions, but what else can we do, go and get another doctor and where?
I don't want my husband to go through anymore tests.
I am told the specialist is a good doctor and it's the main Cancer Centre in our area, so I think we are in good hands.
It is good to get it out before it grows, however, he thinks it's been there for a while and it is a large mass 2 1/4 inches.

By LOHENGR1N On 2015.01.16 22:52
Lynnie, That news wasn't what everyone was hoping for I'm sure. I just wanted to let both of you know you're in our thoughts and prayers. Others will respond I'm sure after they get over the initial shock of reading the update. The M.D.S.. and Cancer Doctor will get together and figure it out and go from there. I just wanted to let you know we're all here for you and in your corner and do care. Times like this it's just hard to find the words to respond. G-d bless!

By bksquared On 2015.01.17 01:20
Sorry to hear the diagnosis, but the prognosis sounds good. If the surgeon feels the outcome is a better quality of life that is what you want. PD is hard enough to handle. Therefore the removal of the mass reduces impact on his overall health. It is a lot to get through but together you will do it. Do stay in the hotel to be safe and comfortable. Have faith in your medical team and they will get you through what lies ahead. My thoughts are with you both.

By makrivah On 2015.01.17 08:49
Stay strong. As others have said, your doctors will find the best course of action. You and your PWP are in my thoughts and prayers.

By VioletV On 2015.01.17 13:25
Oh my Lynnie,
My thoughts are with you. Your husband is lucky to have you to support him through this difficult process.

VV

By moonswife On 2015.01.17 21:04
Lynnie,
All we can add are prayers from California that the whole procedure goes as well as the doctor thinks it will.
Godspeed.

By carman96 On 2015.01.18 11:01
Lynn, sorry for the diagnosis but it is very good that it's not in the lymph nodes. If they can remove the mass in one surgery, that is good too. PD complicates things of course.
Hoping for the best possible outcome for your husband. Hang in there.

By jaxrock On 2015.01.18 16:14
Oh, my..........
My prayers and positive thoughts are being sent your way.....
Hold on tight.....and take care of yourself during this crisis.
Hoping for the best..............

By Lynnie2 On 2015.01.19 14:34
Thanks everyone for your good thoughts. i appreciate your support.
We are waiting for the call from the pre-admissions department and then if all goes well, they will book the surgery.

I am writing a letter to our family doctor with the update and will drop it off tomorrow when he goes about blood thinner count.
I don't know if the doctors gets all of the reports about the biopsies and about the surgery. Sometimes they take a while getting there and booking an appointment with him also takes a while, so I though the letter would explain what is happening and hopefully get his input.
Maybe he'll call us if he sees the letter.

When we saw the thoracic surgeon the other day, he didn't have the biopsy result of the mass and he had the secretary call to find it. It was done after the New Year and maybe the results not done yet they said.
In the meantime we waited in the office which was nerve racking.
At one point I thought we made a trip for nothing, but they finally got the results.

By carman96 On 2015.01.20 08:28
Lynn, did you speak to the MDS yet?
Why did you write a letter to the Dr? Can't you just call him? Just wondering.

By mylove On 2015.01.20 09:03
Carman - I think the letter is really smart. I don't know her situation, but here the doctors are all booked out for about three months, and they don't take phone calls. I've never been able to call and actually get a physician. You can get a nurse - sometimes, if it's dire enough - and hope that they relay correctly but nine times out of ten they just tell you to "schedule an appt if you feel you need to contact the doc". If I had a great deal of info to relay I'd do a letter in a heartbeat.

Just curious - do you really call and actually get to talk to your doc? That would be awesome...

By Lynnie2 On 2015.01.20 09:36
You are right about the appointments even though he said if we needed him he would talk to us.
I will ask if we can talk, but I doubt it as his appointments are booked far ahead. He also goes to a nursing home certain days or the hospital so that limits the days in the office.
One other time I wrote a letter and he called me and also when he was getting his blood count by the lab nurse, because of Warfarin, sometimes he would call instead of the nurse to give us the results and whether to increase it certain days.
Now he is on a program where the nurse pricks his finger and gets the reading on the spot and the call isn't necessary anymore.
I don't know if the doctor will call us, but he talked to us at the start of this so hopefully he'll make a call or even set up a quick appointment.

By LOHENGR1N On 2015.01.20 11:17
ML, Your question wasn't addressed to me but yes. Whenever I have called my neurologist he either comes right on the phone or if he can't right then he returns my call as soon as possible (then longest time I've had to wait was about 20 minutes). I'm amazed, mad and saddened that others doctors are treating their patients this way and it seems to be accepted common practice?

By makrivah On 2015.01.20 11:36
Al, I'm afraid delayed response (I.e., make an appointment to speak to the doctor) is more the norm these days. For example, just last month After an MRI, the tech said the results report would go to the doctor that afternoon. When I called two days later having heard nothing, the office personnel made me set up an appointed for three weeks out. At that appointment which lasted less than 5 minutes, the doctor told us the results were normal and nothing needed to be done. By the way, it takes us 90 minutes one way to drive to the office. I wonder if this is being driven by insurance reimbursement guidelines? Al, If I remember correctly, you have a long term relationship with your doctor. I am grateful that you and hopefully others have the attention and care you need and deserve.

By jcoff012 On 2015.01.20 11:50
Just tossing this out....Both my and Carl's doctors have online access and someone responds almost immediately...via email or phone call if it is important enough. Is that an option here?

I keep remembering what my doctor said, more than once..."Never forget, *I* work for you. Call me anytime." She called me less than five minutes after I let her know we were driving the six hour trip to be there for my son's surgery for cancer. There are a few truly special people out there!

I hope you are able to rest before all of the cancer journey begins...it is long and tiring...hugs

By carman96 On 2015.01.21 06:49
Lynn, I see that you have an upcoming appointment with MDS so I hope you see him before the surgery.
Are the doctors communicating with each other?
I guess I'm lucky that my doctors are available to me, even if sometimes I have to wait a few days to get a call back or email.
One time his back doctor told me to call him instead of coming for a follow up because he was concerned about us traveling so far. When I called the receptionist said "the doctor doesn't do consults over the phone." I said he TOLD me to call him! And he did call me! Sometimes the ladies are too protective of the doctors and sometimes we have to be very assertive in a nice way.

By VioletV On 2015.01.21 09:35
How hard to have to wait and jump through so many hoops to communicate about something so important.

When we moved to a town of 8000 in a rural state from a big city we were, in fact, surprised both that our PCP took enough time to talk to us AND that for some specialists (like my osteoporosis specialist) the wait was 6 or 7 months long.

We are very fortunate that my husband is a concierge patient of a very knowledgeable Parkinson's neurologist -- it is well worth an expense that, for us, is manageable to have him pick up the phone for those 2am panics. What he and we have learned is that his ready availability truly limits our calls, since we know when we need him, he will be available. Also because he has a great interest in educating us about PD we now are able to make medication adjustments within a broad outline that he has given--which has led to much better control over my husband's symptoms.

All of that to say that we have to learn the best communication pattern for our doctors. Believe me--they, more than anyone, hate the restrictions that limit their ability to be human with us. I'm sure of that.

VV

By Lynnie2 On 2015.01.21 20:30
Unfortunately the pre-admission registration is before the appointment with the MDS which in a way is good.
We had to cancel an earlier appointment with him but at that point we didn't know he was having surgery anyway.
So one day for pre-admission and the very next day for the MDS appointment in the same city. I've made reservations to stay at a motel so we won't have to make the trip back home. The pre-admission could be a long afternoon.

The surgery definitely has to be done no matter what the MDS says, but we'll know more to tell the MDS after the pre-admission. I imagine he'll agree it has to be done.
I know the surgery will be hard on my husband, and he is worrying, but things are going fast so he won't have to wait months for the surgery which is scheduled for Feb. 17.
Our children will be with us during the week of the surgery so I will have good support.

By carman96 On 2015.01.22 23:37
So glad you have the support of your family Lynn. Hoping for the best for your husband.

By JulieB On 2015.01.26 15:24
Dearest Lynnie,

Along with all those who have already expressed their love and promises their prayers, for this very difficult time and news, I send you mine as well....

xoxoxo Julie

By Lynnie2 On 2015.01.28 14:24
Thanks everyone for your support.
He had his Pre-Admissions appointment this week where 6 different people came to the room asking questions and taking blood, and documenting medication, etc.
We even signed a paper, but didn't have to, as to if there is enough tissue after removal of the mass, it can be used for research.
The Anesthesiologist was a little concerned about what affect the
anesthetic might do in the future to his memory, as was affected after one test where they put him under, but decided we have to go ahead with things as his health is good otherwise.

We had a appointment with the MDS the next day, so I asked his assistant if he had any concerns with this issue and he said there shouldn't be any lasting affect on him. We know he'll feel fuzzy, etc and it might take a little longer for him to get back to normal, but any normal person could be that way. With PD it could take a little longer though.
We have the day of surgery but won't know the time until it's closer to the day.
The clinic nurse did rattle off the things that will happen on Surgery Day and it was difficult to remember it all, however, she gave us a booklet outlining things, but not totally what she said. They are so used to telling people, I don't think they realize it hard to take everything in.
She said one person can go in with him until the IV is inserted and then one other person is allowed in, but the whole family can't go in before the surgery, which seems reasonable.

I was so tired after spending the 2 days with appointments and driving so I thought I would sleep well, but only slept good until 3: 30 a.m. This is the third night I haven't got the proper sleep, and it wasn't my husband's fault last night (he sometimes get up for something). I was just over tired and achy........ so hope tonight is better.

We don't have anymore appointments this week, but 2 next week for other things, so we can relax somewhat.
I am going to make some Clam Chowder soup for supper which we both love......... You are all invited....lol

Take care everyone and thanks again for your thoughts and prayer......... .

By jaxrock On 2015.01.28 14:34
yummmmm clam chowder....I'm there!

I'm sure what is keeping you awake, also, is the worry....our brains certainly work overtime in the middle of the night, right?

Hopefully, after you both have your delicious soup, you'll be able to get a good night's sleep...

Peace and prayers

By Lynnie2 On 2015.02.06 16:46
We are still hanging in there. We haven't heard about the time of the surgery or I should say the registration time yet. They said we will be told a week before, so we should hear by Monday or Tuesday, I should hope.
I am making Shephard's Pie tonight but I make a variation with mushroom soup, mushrooms, onions and curry for added spice.
This week I made some Baked Custard (milk, eggs, sugar and vanilla) and making some of his favourite things too.

Our friends came for a visit yesterday and brought him a Digital Watch to use in the hospital. He can't take his good watch so at least he'll have something to look at after surgery. I don't know if there will be clock in the hospital room.
He'll have to wear it on the arm without the IV, but maybe he won't have to have that on very long.

He seems so tired and naps a lot, but he does that anyway so I don't know if it's PD or the cancer. . I am so glad he is having the surgery soon and get it over with .
I just pray everything goes well.......... I am just scared for him though.

By jcoff012 On 2015.02.07 21:05
Lynnie, I went from the end of Septemer til the first week of December before my second cancer surgery! It is frustrating to say the least, and a constant worry at best. But, I truly think that the two hours before the surgery is the worst, because you both will face all the "what ifs"...BUT, that said, you will be strong and so will he. Cancer has a way of doing that...all the worries and what ifs seem to wash away during the final hour before you go in...you become resolved that you are in good hands, you trust the surgeon, and you know that all of this is part of life...and you can, and will, come through this.

Take it all one step at a time and don't anticipate results. Rely on family and friends and don't go through this alone. Friends really want to help, but you will need to tell them exactly what you need and how they can help. Don't think you always have to be strong or brave...it truly is ok to be scared of the unknown. But, remember, that is why you have good doctors. Ask as many questions as you need to be comfortable. Know you are welcome here. I keep monitoring to see how you are doing, but am facing end of life with my Mom...she now is in end stage congestive heart failure...But, know we are all here for you...

I wish you a short wait til surgery. Hugs from our home to yours. From an eight year cancer survivor with no evidence of the disease, I wish you peace...love to you both, Jane

By Lynnie2 On 2015.02.12 15:55
The registration is 9 a.m. so the surgery will probably be a couple of hours later. That seems like a good time and we'll be staying close to the hospital and won't have to worry about travelling.
So now it just waiting, so it won't be long now.

By Lynnie2 On 2015.02.12 15:58
The registration is 9 a.m. so the surgery will probably be a couple of hours later. That seems like a good time so we won't have to wait too long We'll be staying close to the hospital and won't have to worry about travelling.
So now it just waiting, and it won't be long now.
We'll trust the Lord that things will be okay.


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