Ben is going tomorrow to discuss w/ his oncologists the possiblility of surgery-either removing lung or maybe the pluera (it is only in his pleura so far). The meso sites i have searched about these surgeries say that it may prolong his life...but still not past 5 yrs. WHY?? It seems to me that removal would take away the meso and he would then have no more worries and can live a long, normal life span. Why is it still a threat?
Also, I need to know how much to tell Ben, about his life expectancy--so far he doesn't know this info--should he go into this with all the hope available, or does he have the right to know that he only has so many years left????? It would seem dishonest not to tell him--I think I would want to know--what if there is something he wants to do before he goes?? I am at a total panic....how much do I tell him?? It seems all I read medically that meso will take his life, it is just a matter of how long they can help him live.......please help if you can--I need to know before he makes the final decision tomorrow about whether to take surgery or chemo.......
I will check on here but would rather have replies to susanzzw7@yahoo.com b/c I am so nervous, haven't yet figured out how to find my posts and replies yet---please email me?? thank you and God Bless you all.......Susan
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mesothelioma--pls read if you or yours has this.....
- By susanzzw7
- Posted September 29, 2009 at 11:55 am · 6 replies
- In Family members and caregivers
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- By SaraLee
- Posted September 30, 2009 at 7:05 pm
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Hello
I am so sorry to hear this .. They believe my husband has methosilioma also and I am finding it hard to find very many people who have this diagnosis .the numbers are going to go up because it sits there for 40 to even 50 years then explodes into metatasis lung cancer .. He had a VATS at the VA on Tuesday is home but he had such an awful experience at the VA i was on the phone with 911 until a doctor came to the room as he was sitting screaming on the bed which is not like him at all ..
What I did was punch in methosilioma , someone called immediately when I signed up for a site .. They sent me tons of material on it and we are just waiting for the VA to get this diagnoses to us .. It was supposed to take 7 days.. I wil call his primary to find out because every other appt is taking so long . but this man calls me almost every day until we find out ..
You can get a lot of information ..I believe thier ultimate goal is they will want me to file a law suit as why would someone send so much info and believe me it was overnighted .. I hope you continue to write because i have found no one on this site who might be able to identify with my fears and also your fears..
I wil pray for you and hope you pray for us
Sara
- By SaraLee
- Posted September 30, 2009 at 7:07 pm
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Ps .. I have heard of the operation they want your husband to have .. It is a very serious operation and removes all this lining from the pluera around the lungs and heart and is very very serious .. They can only do this with certain people as many cannot withstand it .. I know my husband was not or could nto be subjected to it .. I know it is not done in very many cases at all .. I hope if he decides everything goes ok
- By gpawelski
- Posted September 30, 2009 at 9:51 pm
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susanzzw7
Some thoracic surgeons would use talc in the majority of mesothelioma patients as palliative therapy to control pleural effusion. Few patients can undergo an EPP (extrapleural pneumonectomy), particularly on the right side. More patients can likely receive a total parietal pleurectomy and ablation of the space with intracavitary chemotherapy, photodynamic thearpy and/or laser of bulky disease. This may work as well as an EPP in terms of survival and morbidity. Mesothelioma survival differences are often measured in months following radical surgery versus best medical and palliative therapy.
Functional Tumor Cell Profiling may offer better mesothelioma treatments:
http://www.mesothelioma-aid.org/ftcp.htm
http://cancerfocus.org/forum/showthread.php?t=1077
- By susanzzw7
- Posted October 1, 2009 at 3:05 pm
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Do you have to go through the VA for this???? Ben had the VAT surgery and all went well--at our local hospital, with our oncology team of course, but it was fine.....if it was a bad experience, shouldn't you consider finding a good oncologist???? and a good oncology surgeon?? If money is the problem, there is soooo much help out there---sometimes 100% sponsorship.....
of course we will pray for you.....
Susan
ps....Ben is 51 and in great health besides this...so they believe he is a great candidate for this surgery. (we go Oct 12 to get biopsy of his abdominal lining and biopsy of his lymph nodes to make sure his is still only in the pleura before this radical surgery...) But lots of people go on to live normal lives with only 1 lung....go to search on Inspire "life with one lung".
and i will pray for you too, Sarah
- By susanzzw7
- Posted October 1, 2009 at 3:08 pm
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also, be careful of these lawyers....they are moving fast on us, too, b/c they want you to sign up with them......look at all of them carefully--don't go with the first one. I haven't replied to them yet myself. Just worry about getting the medical help you need first, money later.
you can email me anytime...susanzzw7@yahoo.com. It seems most of the lung cancer members of this site are lung cancer......not mesothelioma....we need each other. I will be here for you.....
- By susanzzw7
- Posted October 1, 2009 at 3:15 pm
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Ben has had VAT surgery a couple of weeks ago. That did stop the fluid from coming back--just had a test Tuesday....
He is a candidate b/c he is only 51 and in great health until this. His heart tests are strong, and his breathing tests are as well.
We go on Oct 12 for biopsies of abdominal lining and lymph to make sure it is contained to the pleura.....we won't schedule lung removal for another few weeks, so I have time to research all this.......
thank you for all your help!!
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