Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,64530,0.htm Sat, 25 May 2013 00:00:00 GMT Sat, 25 May 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ On Feb 21, 2012 2:33 PM thebyrdsfriend wrote: You are absolutely correct that back in the 80's they had no idea about HPV vulvar cancer.  But, that didn't stop them from operating and removing parts from my girlfriend.   She then had a radically disfiguring operation in the 2000's when it came back, and scads of radiation.  She was still not healed (open wounds) a year after procedure.  Luckily her doctor FINALLY got her into bariatric (oxygen) chamber for months, and she finally healed the wounds.  Just because they didn't know back then what it was, doesn't mean they don't know now, that back then it was the same. I'm so sorry your general practioner has dropped you.  But you should be being seen by oncologists now anyway.  Do you have insurance?  I'm asking because you are saying "case worker" which may imply medicaid, or something similar.  Anyway, is there any way you can get to a teaching hospital/cancer center?  They charge no more than any regular cancer center or doctors.  Usually it's a university hospital medical center. They accept medicaid, medicare, and charity cases.  Any lung biopsy "could" collapse a lung.  Forget about that, you'll probably be knocked out anyway, and will never feel a thing.  I hope you trust in your thoracic surgeon, and let them biopsy, you need that procedure done for correct diagnosis (primary cancer) and correct treatments (gene mutations) for chemo. Your oncologist will know what you are going through.  My oncologist is the one who prescribed me xanax.  They know the mental anxieties that go along with cancer, and have no reservations with prescribing an anti-anxiety prescription.   I just don't know why you are being denied this medicine.  Talk with your oncologist, or even the thoracic surgeon.  Once I was diagnosed with cancer, my general practioner was COMPLETELY out of the picture.  I had no reason to see her again, and there was absolutely no animosity.  GP's KNOW they are not cancer doctors. Now, I must say that when talking with all these doctors, kindess gets you farther than negativity and accusations.  In your case it doesn't sound like the "squeeky wheel gets the oil".  In other words, you  may want to listen, be calm, tell your doctor your concerns, and then listen some more.  Your mind may be thinking of things while they are explaining important issues, and you aren't listening as well as you should.  Can you get someone to go to appointments with you?  You may need to be a little more possitive, and a llittle more trusting in you medical team.  I know it's scary putting your life in someone's hands, but it's  needed in treating any cancer. So, please don't take me wrong, but I hope you get to your oncologist and get some anti-anxiety meds, and I hope you can trust in your doctors.  Like I said, I still don't understand why you are even dealing with a general practitioner anyway.  With a cancer diagnosis, that is not neccessry, nor standard operation procedure.  You should be in the hands of qualified cancer doctors. God Speed, and God Bless, I hope you find the help you need. Byrd I couldn't agree more with Byrd.  I was diagnosed with stage IV, non-small cell lung cancer (squamous carcinoma) exactly 2 years ago.  My prognosis then, without treatment, was 4-6 months of life.  With treatment, the oncologist said I might gain a few months, perhaps as much as a year.  I thought it worth a try.  After two chemo regimens that failed, I entered a clinical trial for the iV drug eribulin and the tablet drug Tarcevea.  This turned out to be a life-extender for me, halting the spread of the cancer for many months till last fall.  I had some radiation to stop hemotpysis (coughing up blood) which worked like a charm.  I'm now on IV Gemzar, having beaten the odds by far as far as survival goes.  The side effects have sometimes been a bit tough, but at least I've had no pain to speak of nor nausea.  So I would strongly urge that you stop messing with a GP and get under the care of an oncologist.  Ask questions galore.  If he or she won't or can't explain CT scan results, side effects, probable benefits and risks, get a new oncologist.  Mine has a team of nurse practitioners, who are excellent, for dealing with side effects and non-cancer problems.  I strongly recommend trying out anything the oncologist recommends unless the gains are certain to be minimal.  You can stop at any time and get onto palliative care (symptom control only), but you might just hit some really good places as I did. jrpeters Sat, 03 Mar 2012 00:00:00 GMT And I also want to say that there is ALWAYS hope.  You are conversing here with a lung cancer survivor of 1 1/2 years.  I go for ct scans once every 4 months.  It wasn't until my THIRD biopsy that I was diagnosed stage 3a and there are only 4 stages of lung cancer.  I've had the top of my right lung removed, and I've endured chemo.  So, it is survivable, and it is not a death sentence. Giving up was never an option for me.  I never asked God "why me" and I never had a pitty party for myself.  I put on my big girl panties, and surged forward with a plan of action prepared for me by my medical team.  I also want to tell you it wasn't all rainbows and unicorns.  I did go for a second opinion after the first oncologist.  I'm glad I did too, he was so very wrong, and I truly believe I'd be dead now if I started treatment with him. So, keep your hope alive, and keep possitive.  It's the only way I am getting through all this.  Otherwise, I'd drive myself completey nuts, and that, my friend is not an option of the way I choose to live whatever time on this earth I have left.  I CHOOSE to be a happy person, filled with hope, God's Blessings, and enjoying each and every day. thebyrdsfriend Tue, 21 Feb 2012 00:00:00 GMT You are absolutely correct that back in the 80's they had no idea about HPV vulvar cancer.  But, that didn't stop them from operating and removing parts from my girlfriend.   She then had a radically disfiguring operation in the 2000's when it came back, and scads of radiation.  She was still not healed (open wounds) a year after procedure.  Luckily her doctor FINALLY got her into bariatric (oxygen) chamber for months, and she finally healed the wounds.  Just because they didn't know back then what it was, doesn't mean they don't know now, that back then it was the same. I'm so sorry your general practioner has dropped you.  But you should be being seen by oncologists now anyway.  Do you have insurance?  I'm asking because you are saying "case worker" which may imply medicaid, or something similar.  Anyway, is there any way you can get to a teaching hospital/cancer center?  They charge no more than any regular cancer center or doctors.  Usually it's a university hospital medical center. They accept medicaid, medicare, and charity cases.  Any lung biopsy "could" collapse a lung.  Forget about that, you'll probably be knocked out anyway, and will never feel a thing.  I hope you trust in your thoracic surgeon, and let them biopsy, you need that procedure done for correct diagnosis (primary cancer) and correct treatments (gene mutations) for chemo. Your oncologist will know what you are going through.  My oncologist is the one who prescribed me xanax.  They know the mental anxieties that go along with cancer, and have no reservations with prescribing an anti-anxiety prescription.   I just don't know why you are being denied this medicine.  Talk with your oncologist, or even the thoracic surgeon.  Once I was diagnosed with cancer, my general practioner was COMPLETELY out of the picture.  I had no reason to see her again, and there was absolutely no animosity.  GP's KNOW they are not cancer doctors. Now, I must say that when talking with all these doctors, kindess gets you farther than negativity and accusations.  In your case it doesn't sound like the "squeeky wheel gets the oil".  In other words, you  may want to listen, be calm, tell your doctor your concerns, and then listen some more.  Your mind may be thinking of things while they are explaining important issues, and you aren't listening as well as you should.  Can you get someone to go to appointments with you?  You may need to be a little more possitive, and a llittle more trusting in you medical team.  I know it's scary putting your life in someone's hands, but it's  needed in treating any cancer. So, please don't take me wrong, but I hope you get to your oncologist and get some anti-anxiety meds, and I hope you can trust in your doctors.  Like I said, I still don't understand why you are even dealing with a general practitioner anyway.  With a cancer diagnosis, that is not neccessry, nor standard operation procedure.  You should be in the hands of qualified cancer doctors. God Speed, and God Bless, I hope you find the help you need. Byrd thebyrdsfriend Tue, 21 Feb 2012 00:00:00 GMT Ps o yes i was dumped , i am looking for a new gp darlin, the old one said her and her case worker/office manager was a package deal and the fact that she(case worker ) kept trying to double bill procedures was not a reason for me to request that her /my case worker not touch my records anymore,much less make appt,she didnt notify me of,and i refused to accept her w/ her case worker attached ,so she said shell treat me for one month ,and i said nope , it ends now ...and filed a grievence. So as far a xanax ,they wont prescribe that to me ,come on ,doctors think everyones a pill freak these days ....   DDebRose52 Tue, 21 Feb 2012 00:00:00 GMT Thank you for replying , i dont mean to sound negative, i hate the thought of all this again...and the bull that accompanies it...doctor bull...ya know...   DDebRose52 Tue, 21 Feb 2012 00:00:00 GMT Nobody explained anything ,according to the report,they couldnt see anything clearly, then the oncologist said something entirely different,I cant understand him anyways,abiopsy could collapse a lung, I have had the max rads of radiation I can have,I was told, and as far as I know vulvar cancer due to HPV wasnt heard of  in the 80s specially with a radical vulvectomy, pernial flaps,as a end result , HPV awareness started recently and  they cant get a hold of it I understand . So why cant a radiologist tell the difference between scar tissue and cancer or malignant and benign, ,isnt there a difference in looks, as well as growth rate... 3.2 in an upper right lobe is significant enough of a spot to consider quality as apposed to quantity of life , whats a couple more months ,a year at the outside? Why cant i get a reliable ,everyone reads and sees the same diagnoisis ,instead of opinions, pretty hard to make a judgement call w/opinions . DDebRose52 Tue, 21 Feb 2012 00:00:00 GMT The thoracic surgeon will do a biopsy.  That is how they find out what kind of cancer you have, and they stage it that way too.  Each cancer is different.  With the biopsy they look at the cells, and that is how they know what type of cancer you have.  You should have had an appointment with a doctor to explain your pet scan.  Pet scan will "glow" when cancer is present.  You say you aren't going to play slice and dice with these guys, but heck, if it is lung cancer, then that is the hope of EVERYone suffering from this disease.  They want to get it out as that is the most successful way of treating it. Many, many of us have had lobe removal (and glad of it) and some the entire lung. I don't understand you saying that you can't be saved.  That baffles me here.  You have said in past posts that you are the longest surviving vulva cancer survivor.  I don't know that that is correct.  I've got a girlfriend that went through this battle in the early 80's, and again in the mid 2000's.  Yes, she's had numerous operations, but until this past one, she never had radiation.  It seems it is VERY curable with radiation.  She's been cancer free AGAIN for many years.  So much has been found out about this type of cancer, and you can do research or ask your oncologist about it. You need to stop with the "they can't save me", especially since you've not even had a biopsy or been staged.  Lung cancer has come so very far too.  We are living years and years longer than we used to.  Some of us are actually being cured, especially if found early. So, good luck with your thoracic surgeon.  Stop the feaking out (xanax works wonders, should ask your docs about that) and trust modern medicine.  And, you've not been "dumped" by your general practitioner doctor.  You've been refered to experts, and they are the ones who you need to put your trust in.  If you can't do that, then get a referal.  A teaching hospital is the best, they care, they have all the clinical trials at their fingertips, and they have specialists in just your type of cancer.  AND, they would have had a meeting with you to discuss your pet scan, ct scan, or any other questions you may have. God Bless, and get to that thoracic surgeon asap.  Start working on YOU, and trust in your very experienced doctors. Byrd thebyrdsfriend Tue, 14 Feb 2012 00:00:00 GMT how do you know what yo have ,do the different cancers look different ,1 month it was non visible the next month it was 3.2 spot on lupper right lung ,pet scan 1 month later said it was 3.0 as of 2weeks ago,....and thyroid lesion, this,that and what ever ,the doctor says he wants me to come in to discuss a thoraxic surgeon forsomething.thena gyn oncologist oncologist calls me out of the blue and wants to check me..for what they cant save me right:"?..i'm not going to play slice and dice w/these guys....still cant understand the pet scan findings,can any one here?  DDebRose52 Tue, 14 Feb 2012 00:00:00 GMT