Radiation Exposure

sandysp said:

Biopsy

I am sorry to hear MSK would not take your insurance and this surprises me actually. They have been so good working with my insurer. It hasn't always been an easy road for them either working with my insurer either. They also seem to take Medicaire and Medicaid.

I credit radiation for saving my life.

If my blood tests had come back better, I doubt they would have ordered the scan in September. It wasn't until after the blood tests came back that they ordered the scan. But it doesn't bother me to have the scan since after all the radiation I had, it seems like small potatoes.

I am so sorry you had to dismiss your oncologists. How stressful.

My GI was very ignorant when it came to anal cancer and gave very bad advice. He understands the protocol now. I was his first anal cancer patient. My Oncologist specialised in GI cancers so I was very lucky.

Good luck to you.

All the best,

Sandy

 

I have a spot on my lung and elevated Carbon Dioxide levels along with a couple of other problems with the blood tests. I guess this is why I have to have the scan. 

sandysp said:

CO2 levels

I have a spot on my lung and elevated Carbon Dioxide levels along with a couple of other problems with the blood tests. I guess this is why I have to have the scan. 

sandy,  i have always had elevated levels of co2 on every blood test done at mda ....they never address the issue...probably because my lungs are clear...there was something on one that they watch but it seems to stay the same so docs are not addressing the issue....  scans scans ,,,,they do really scare me and i had soooooo much radiation on my neck in the 70"s for skin cancer which now they do not do that for basil cell carcinomas....and i had radiation to my ears for infections in the 50's as a child....so they watch my thyroid now...medicine has changed a lot , thank heavens....and i worked as dental hygienist for years before we wore gloves, masks, etc...and i did not worry about radiation exposure too much... i am probably going to blow up in a few years....  ugh!!!!!    take care    hugs   sephie

LaCh said:

sandysp

If you don't mind my asking, where do you live that you use MSK?  I live about 10 minutes walking distance from them but didn't use them because they don't accept my insurance (they were my first choice because of the close proximity). As for trusting my providers to do what's in my best interests....well, I envy you there. I have zero confidence that they know or will do what's in my best interests. Well, that's not entirely true. I trust my gastroenterologist. I fired my two oncologists as soon as treatments concluded and haven't seen either one of them since. And it was me who said No to any more diagnostics that use radiation.  I assume the tumor's gone. If it isn't, well, then it isn't.  I'll have a biopsy in a few months, not so that I'll know what to do medically but so that I'll simply know what to do. Go back to Spain, that sort of thing.  I'm done treating this (but really think that it's taken care of, in any case).

so what I want to do -- go to Spain, 8 weeks post radiation/chemo; I have also decided that if this first treatment protocol did not take, then too bad for me, as i will not undergo another round or any possible surgery; further, I think it is unethical to not take insurance (because it doesn't reimburse sufficiently), and that this indicates that MDs/ hosp do not act in the best interests of the "patient"........I find that "trust" is another way of succumbing to the passive stance of "they know best", etc. And Sandy, amount of radiation from a whole body CAT scan is not insignificant....it can reactivate HPV cells to start their proliferation. I won't go through airport scanners anymore either.

LaCh said:

NYinTX

Have you ever been to Spain? 

I remember a conversation that I had in 2011, the last time that I was in Spain. I was explaining to four of my gaping-mouthed friends about the health care system in this country. They were stupified. "You have to do WHAT?  You have to pay WHAT?  If they don't take your insurance then WHAT? What does take your insurance even mean?" Now, Spain has it's share of problems and MORE than it's share, with it's economy in ruin, a shocking, almost 50% unemployment rate among 18-25 year olds, people being evicted all over the country, government corruption so rampant, so common and so extreme that it makes America look like the home of angels, but my feeling is, no more treatments, no more radiation, no more doctors, no more bullcrap and if I find out that I still have cancer, it's back to Spain for me.  As an expat, I'd be less affected by the problems plaguing Spain than my friends in Spain are. If the cancer is still with me, I'll find out sooner or later and then I'll live whatever time I have left in the place that I love.  Everybody dies.  The point is, how do you live.  I agree with you. Placing trust in one's doctors, in western medicine, in the health care system of the United States, is all trust badly placed. Western Medicine is good at fixing broken things and not so good at fixing sick things. It's good at supressing symptoms (lowering blood pressure, lowering cholesterol, lowering stomach acid, damping your immune response when you have an immune response run amok and so on, but not good at addressing the underlying cause of the problem) it's good at isolating a problem and not so good at seeing the person as a whole.  The American health care system is a for profit system and this is and always will be in opposition to delivering affordable health care.  It's profit DRIVEN, not medically driven. We work hard to keep people sick rather than resolving problems, and this is also and extremely true of the phamarceutical companies. There are egregious conflicts of interest between doctors, pharmaceutical companies, hospitals and consumers. Western medicine is excellent with technology but still practicing 19th century medicine in many ways.  It's way too cavalier with dangerous diagnostics. Simply because you can do a thing, doesn't mean that you should do a thing. Western medicine sees cause and effect, other modalities see it more as a cycle, one thing sets off another which feeds the first which perpetuates the cycle. Western medicine sees a line. Others see a circle. To address one thing and ignore another addresses nothing. I'm disgusted, frustrated and unwilling to trust in any of it any more (well, I never really did in the first place).  Spain is no panacea but the part of Spain that I go to is off the grid, isolated and beautiful. No one where I go--and I mean no one--speaks English and rather than miss is, I revel in being surrounded in Spanish. I speak the language, love the language and didn't miss English. The economy is in ruin and the euro is still worth a tad more than the dollar, but the part that I go to is so economically depressed that my American dollar would go 4 times as far.  Everyone dies. The question is, how do you live? 

For those who will have something disagreable to say, these ideas reflect my opinion. You can't argue with an opinion.

I was born in Germany and returned for about 10 years when my husband was active duty. Freom Heidelberg we were able to travel all over Europe, E.Europe, but sadly did not make it to Spain, although we snowboarded a lot in Swiss and Italian Dolomites, I did visit Portugal, Greece, and Crete, and the Azores...I never wanted to return to the States in 2000, and would leave right now forever anywhere in Europe if I could. One of my remaining goals as soon as I get over this SCCA experience. 8 weeks post radiation and already dreaming of sunny shores of the Riviera...Spain sounds good. I would live in a tent if I had to....go for it. I lived in NYC for most of my life and just happened to be in TX when this SCCXA hit, otherwise would have gone to MSK, and if they would not have taken my military insurance (which most NY hosp do not), then I would have been in your position as well. What's great about this disease is that it has forced me to take a careful look at what I really want to do or not do......and then do it.....

LaCh said:

NYinTX

Europe and europeans certainly have a different way of seeing, doing and thinking about things, from food to family to the work/life equation (they seem to work to live, while Americans seem to live to work.)  You should go back if you have the opportunity.  No one knows what the future holds, the good, the bad or anything in between.  I can't say that the cancer has changed the way that I see things. My feelings and priorities are what they were before but certainly, if I found out that I still had cancer, I'd DO things differently than I am now in terms of no longer needing to save money for my old age.  And yes, first priority would be to return to Spain.  And try to explain to a European living in a country with socialized medicine that I live 5 minutes on foot from one of the pre-eminent cancer centers in the world but because they "didn't accept my insurance," I couldn't be treated there... and that's pretty much ALL you have to say about health care in America.

i am really mortified that MSK would not take your insurance   and for NYinTX that they would not take military insurance ....it is ok for someone to put their life on the line for us but our great hospital would not take their insurance....crazy..... i would love to go to Spain also and i will work on it....   got invited to go to tuscany but it would take 3 airplanes and a train ride with a group of really strong women... i still have too many issues ...get tired easily ...get sore...etc...and i would need help so i did not want to be a burden so i had to turn it down... i want to travel more thatn anything but have to do it my way.....  sephie

sephie said:

horrible

i am really mortified that MSK would not take your insurance   and for NYinTX that they would not take military insurance ....it is ok for someone to put their life on the line for us but our great hospital would not take their insurance....crazy..... i would love to go to Spain also and i will work on it....   got invited to go to tuscany but it would take 3 airplanes and a train ride with a group of really strong women... i still have too many issues ...get tired easily ...get sore...etc...and i would need help so i did not want to be a burden so i had to turn it down... i want to travel more thatn anything but have to do it my way.....  sephie

I didn't take it personally that MSK refused to accept my insurance, I took it as one more absurd, egregious, shameful symptom of our health care system, because at the end of the day, it ALL leads back to only one reason. Money.  In a profit-driven business model, which is what our health care system is, there's only one thing that dictates all things and that's money. My insurance didn't pay enough money and MSK doesn't participate for that reason. Obama's health care reform was health care INSURANCE reform.  It's still and only a for profit BUSINESS.  The MSK thing was just one more "thing" for me but I'm disgusted and completely fed up with it all, and I'm done with doctors, done with insurance, done with tests and treatments.  I'm ready to live and die in whatever way either unfolds. We all go sometime; I'd rather die calm and contented than pissed off and frustrated and the only way to avoid the latter is to avoid any more encounters with our medical system and those who are a part of it.  Whether or not I make it back to Spain remains to be seen. I have money and medical issues that make it somewhere difficult and extremely difficult. We'll see.  

sephie said:

lach

 i agree with a lot of what you have said...  back in 2009 when i was diagnosed  , i was not sure that i even wanted to do chemo and radiation.... i was hurting sooooooo badly just from the biopsy and bm's that i was ready to just let it run its course and go to Heaven ( i believe in God and always have )....i have no children but do have a hubby who asked me to try the treatment.    at that time, i had never heard of anyone who had this...then on the next day,  it came out that Farrah had it ....sooo  i watched her special on tv just looking for a few hints on how to help the pain....then saw that it came back on her and then saw her in the bed dying...that did not scare me because it seemed like the way to stop the pain....Now, i wish that i had asked more questions about the radiation.... i just was sooooooo tired and in so much pain that i just went thru all the steps of tx and let them guide me along....i do remember that some doc  at MDA told me that this tx radiation could possibly cause more cancers in the future but that this is the only tx that they knew of  and he said this tx is barbaric....sooooooooo we will see..... maybe we can keep letting people know how we are in 6 years then 8 then 10  then 15 then 20, and etc.....to help others.... i am 60 years old now and lost my younger brother to Diabetes when he was 47.... i think diabetes is worse...... on another note,  LaCh, if you get to go to spain , does your dog get to go.... i love alll animals but just have a fab cat at this time.... used to have the greates yellow lab but he passed last year.....i never got to take them on any trips..... thx for your input...  sephie

Hey Sephie,

You know, I hesitated to do the treatments too.  No one said to me, "Hey, you know what, this is barbaric but it's all we've got," and I would have greatly appreciated the honesty and it would have gome a very long way to building a bridge of trust, instrad of the deep, deep distrust that I have in the whole lot of 'em. That said, they didn't have to tell me because I already figured it was brutal and barbaric.  So do I regret my decision to have the thing treated?  I don't know.  I can't say that I do but I can't say that I don't. I'm almost 60 too and there are days that I feel more or less ready to die. When I got the diagnosis my only thought was--and is--for my dog.  I wouldn't love him more if he carried my DNA.

I'm sorry to hear about your brother... Losing a loved one is hard, unspeakably hard.  Part of my readiness to die has to do with someone I lost 7 years ago, and while I don't believe in god, I do believe that consciousness survives physical death, so that's part of my equation when I factor all things together. 

As for my dog and Spain, technically, yes, you can take a dog to Spain but I didn't and wouldn't, 1) because I went for 5 and 6 weeks respectively and wouldn't torture him with a plane trip for that amount of time and 2) I'd never put him in the cargo bay of a plane anyway, not unless they gave me an adjoining box alongside his...  just kidding. I'd never put him in cargo and he's too big to come in the cabin with me. But walking in the isolated mountains of Andalucía, I thought many, many times, "the only thing missing is him," and if he had been there with me, I probably never would have come back. to NY. Sadly and ironically, the friends who looked after him both times are now unable to do it again. My friend--the woman of the couple-- a friend I've known since I was a teen, has stage 3 pancreatic cancer. She was diagnosed 5 or 6 months before I was, but the cancer that she has is far, far worse.  In any case, I have no idea what I'd do with my dog but a trip to Spain is so far off that it's nothing I have to think about right now.  There are days when I think that I'll definitely make it back there and then there are just as many days when I think that I definitely won't. More immediate is a short trip I'm supposed to make with my cousin to celebrate our mutual 60th birthdays (same year, different month). We're thinking of September because it's off-season and cheaper but I have no idea what I'm going to do with my dog (meaning, who's going to look after him).  He's like an appendage; we're almost never apart and I'm not sure who has more separation anxiety, him or me, when we're apart.