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bobby22

New here, please help

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Recently, my dad had a PET scan that showed metastates to the bone. He's been having trouble breathing and terrible bone pain.

He had lung cancer about three years ago and prostate cancer about five years ago. Both were treated: lobectomy and prostatectomy. Currently, we won't have a definitive diagnosis until he has a biopsy, which will be perfomed in a few days but it looks like metastatic lung cancer to the bone. I say this because his most recent PSA was undetectable and he has trouble breathing. What amazes me is that his PET scan showed very obvious bone mets and he was/is in a great deal of pain and yet they won't treat him until he has the biopsy and definitive diagnosis.

What can we expect? What is his prognosis? What should we do? HELP!

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Most likely they will radiate his bone mets and that will greatly relieve his pain. You will have to be patient and let them make the diagnosis...I know that's hard. Welcome to the site. Try to read and learn all you can. Good luck to you and your dad.

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Hi Bobby,

First, please do not read those statistics. I believe what you read is for people that opt for no treatment at all. I was diagnosed stage IV, with mets to bones almost 9 months ago, and besides a few aches here and there, I have to say I feel pretty good. I did not have radiation, but chemo instead and it really did help me. I do take oxycodone twice a day.

There's so much they can do today. I plan on being here a long time and its really important to stay positive.

My very best wishes to you both and I hope this helped some.

Joan

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bobby22:

My dad was recently diagnosed with Stage IV LC with mets to the bone. He too was in considerable pain -his hummeral head was almost erroded away and the humerous had a pathologic fracture as a result of the cancer. He had a sugerical procedure to place a rod and nails into the arm to stablize it and then followed after healing with radiation. The radiation made a world of difference (from Morphine to pretty much no pain med's post radiation)!

As far as prognosis goes -- we to wonder about this. It seems to sort of be the "unspoken" when we go to see the doctors. They (the doc's) don't volunteer information about prognosis (other than to say that it is not curable) and we haven't been brave enough to ask :cry: . Sometimes I think knowing would be better, then there are times when I am thankful that we don't know for sure. At this point, we take one day at a time and are thankful for the good days and pray that the bad days will pass quickly and without much event.

The best advice I can give you, with my limited experience, is to live for today and spend as much time as you can enjoying being together - and try not to worry too much about what terrible thing(s) tommorow might hold. We truly never know how much time we have -- even without cancer being a factor!

Talk to the doctors about prognosis if you really want to know. They may give you an idea -- but each person and situation is different so they may not be 100% correct.

I'll keep you and your Dad in my prayers -- God Bless!

Cindy

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there has been much discussion regarding prognosis of all stages of lc on this site since I have come here. We most all agree that there is no such thing as being able to predict survival for lc among our friends.

Some docs try. The ones who do are usually wrong.

Most docs don't attempt to try.

I was told that my lc would be treated as a chronic disease, much like arthritis or diabetes is treated. In other words, when the disease becomes active, there are meds or procedures to knock it back again.

Many advances are being made daily to treat cancers. The information and statistics that you read on the net are outdated. While it is true that lc is not easy to survive, you can look at the profiles here and see that many people continue to live and shine well beyond any predicted prognoses.

Stick with us here, Kid.. We are living and surviving one day at a time..In other words, Yesterday is History, Tomorrow a mystery, Today is the present that is why it is called a Gift.

Today is the gift. Don't worry about tomorrow.

Cindi o'h

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Welcome Bobby. Sorry to hear your Dad has been through so much and the beast has reappeared. I think it is really best to wait til the biopsy results when deciding what treatment is necessary. There are lots of new drugs and types of radiation but some work best on lung cancer, some on prostrate etc. So you really want to know what you are treating. Please keep us posted. By the way , did your Dad have chemo or radiation besides surgery when he was treated? Donna G

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Bobby,

My primary cancer is lung. I thought I had pulled my back and went to my doctor. He sent me to a bone doctor who prescribed pain killers after x-raying me and seeing nothing. I couldn't take them as they were way too strong and made me sick so I went to a chiropractor who treated me for about one month. When I did not respond to treatment he suggested an MRI. Totally shocking!!! I never in a million years could believe what he was telling me. They actually thought my primary was going to be breast (probably because I live on L.I. and it is epidemic here).

My husband asks my prognosis at every visit to my doctor. Makes me crazy. My doctor has one stage IV patient that's been around going on 7 years. Who knows?? I don't want to hear anyone tell me how long I've got. If they do, I'll prove them wrong. He says I'm not "curable", but hopefully we can contain this for a long time. That's my plan :D:D

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Bobby,

Breathe, exhale. Your in the whirlwind right now, but things will gradually calm down, information will be shared, and a plan to ease your dad's pain and treat his cancer will start.

I was dx'd stage IV with bone mets last January and have never had any bone pain or radiation, luckily. My doctor gives me an infusion of Zometa every month - it's a 15-20 drip injection that strengthens the bone, hinders the growth of the mets, and helps prevent new mets from starting. Works for me and I know a lot of people here get it.

Sending caring thoughts and strength to you and your dad. Keep us posted.

Leslie

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Bobby,

My Dad was iinally "offically" diagnosed in mid October. He started on with various forms of testing in June. He had the usual chest ray, CAT scan, MRI, bone scan, a bronchioscope which provided inconclusive results, and then a fine needle biospy which collapsed his lung so he was hospitalized for 3 days -- only to get an "inconclusive" result and was followed by a PET scan which revealed exactly what areas of his body were infected with the cancer. Shortly after the PET a very talented radiologist was able to get a good biospy from the tumor in the hummeral head and we got the diagnosis we had all been knowing we would hear but had been praying was not would we would hear.

As far as physical changes for my Dad, thus far the have run the gamit I think, before radiation and surgery to stablize the shoulder, he was racked with pain and unable to do much other than medicate and sleep quite fitfully for short periods of time, he had no desire to eat and we were doing good to get one protein shake a day into him. This period was VERY difficult for him! He had a hard time with the fact that he was in such immense pain from the shoulder and all the doctors seemed concerned about was his lung which was causing him no pain. It was extremely hard to watch him go from the active, vibrant man who could cut off his arm and continue to work :lol: -- into a man who was phyically unable to tolerate the amount of pain he was in,even with Morphine!

Since the surgery and radition he has become much more like himself, he is now back to eating normal sized and frequency of meals, is more active and as I indicated before is now only using pain med's on occassion. He feels so good now he thinks he is ready to go back to work (he is a heavy duty mechanic). From mid October to his appointment last week he has lost a total of 15lbs, his weight continues to steadily drop but he looks good now, feels great and seems to be more of his "old self" right now.

I wish I could give you the answers you are searching for. I truly do know the pain and stuggle you are feeling and pray that you too find peace with all of this!! Please keep us up to date and ask all the questions you want/need to to help make sense of all this.

Cindy

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I wanted to add and forgot...

Dad stuggled with exactly the same issue as your are pointing out during his "journey" to diagnosis. He was in immense pain and though they suspected lung cancer -- they could do nothing to treat the cancer or his pain (other than to medicate to mask the pain) until he had an offical diagnosis. Our family, lived in this HELL for almost 5 months and watched Dad slowly become more overcome by the pain each day.

During this time I was in almost constant contact with his lung specialist who was gracious enough to talk with me and to reassure me that they were doing all they could to achieve a quick diagnosis. As he pointed out (numerous times :wink: ) they cannnot start treatment until they know what exactly they are treating. To begin a treatment with an offical diagnosis would likely be without benefit and may in fact even be harmful.

I know waiting and watching your Dad in pain is hard! One suggestion I do have (Dad struggled with his) is this... encourage him to "really" tell the doctors honestly about his pain, ask for a stronger med if he needs it to control pain and not to be afraid to take the pain med's as precribed (if he is in pain he will not become addicited!). Dad was really afraid of the Morphine and we had a hard time controlling his pain because he would not take the med's on a timely basis. His Morphine was an extended release Morphine and it took awhile to act, so if he waited until the pain was really bad bad the time the Morphine started to work he was overcome with pain.

Hopefully the will reach a diagnosis quickly and can move on to things that really will help to relieve your Dad's pain and not just mask it.

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I hope your dad gets pain meds while he waits for treatment.

Last Feburary, I had a PET scan that showed uptake to my chest wall, left hilum and remaining lobe in my left lung. The oncologist said my cancer had come back and I should start chemo, although I could wait a while, a few months. There was not any discussion of getting a biopsy before treatment. I decided to go see a surgeon and he did a biopsy. The pathologist determined that my chest wall was clear, and so was my hilum. The nodule was malignant. So, they removed the rest of my left lung. I am cancer free now. If I had not gone to see the surgeon and had a biopsy, I would likely still have cancer. So, I guess having a biopsy would be a final conclusive proof of cancer or no cancer. My operation took place within 2 weeks after the PET scan report was completed. I am glad I had the biopsy. You might push for the biopsy to take place as fast as possible. Maybe it is not cancer. The important thing for now, is to get your dad's pain under control.

Don M

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Hi, and welcome. Radiation is definitely possible for bone met pain relief. Chemo may be possible, too. It is protocol not to treat until biopsy shows exactly what it is, so the treatment can be appropriate.

My wife has had numerous bone mets which have been successfully treated. She is now being treated for liver mets. She is 3 years and 2 months from diagnosis, so I hope that gives you cause for optimism. Don

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You are in my thoughts and prayers. I know that the waiting can be so difficult, but, they really do need to know what the total package is. Sometimes, a second opinion is worth while. I pray for you and your family.

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waiting for the dx is so scary. my mother's true 'battle' began when her LC reoccurred. the first time around came and went so fast. just hang in there. I have to agree that the pronoses are useless. of course, you need to be realistic about how sick your dad may be, but living in the day and just showing up for the fight is the way to go here. people here have both outlived, and died way before, their predicted 'time left'.

keep us posted, and welcome though I hate that you have to be here.

xoxo

amie

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Hi Bobby,

I was dx in May - nsclc stage iv. It started with pain in my arm and leg. After rest and physical therapy offered no relief, they took an xray and found a very large tumor - 8cm x 6cm. I had MRI's, bone scan, PET scan, CTs, bronchoscopy, and needle biopsy over the next month or so. I had radiation in early June fo the bone mets and it relieved the pain to a great extent. Then I had stereotactic radiation for brain mets in July and finally chemo in August. I've had about a 50% reduction in the size of the tumor with 6 cycles.

More importantly, I feel fine. I have a slight pain in my right shoulder with certain movements (I take a pain killer). No other problems. I have not lost any weight, no loss of taste, and in my case, not even loss of hair. No one would suspect I had stage IV lung cancer - I look healthy and feel healthy. Sometimes the chemo knocks down my blood counts so I can be anemic and need some extra sleep.

I asked my doctor how long I could expect to feel good and he said "a long time".

Get info and push to have test now. Initially, I had to call on every test and push them to provide the test sooner. Just tell them you cannot wait the test needs to be done now. I was able to improve all my dates by as much as a month.

Good luck.

Mary

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