undifferentiated cancer, any surviers out there that have had this level of cancer?

california_artist said:

Linda
Exactly! Those things you mentioned, those happenstance occurrences, those are absolutely attributable to the thing we call luck. You did not plan on them you didn't study for them, research for them. You were just somewhere or did some random thing and were very lucky.

Should I have a stroke I would consider myself very unlucky indeed because I am doing nothing to prevent a stroke or heart attack for that matter, of any import. It is my conscious choice to let luck play a part in my health in that area. A situation, now that I'm thinking about it, that I plan on again doing my due diligence in researching, to avoid. Until I consciously take the time to do that, luck or lack of it will play a huge part in what happens.

But with the cancer, I was in essence a college student studying for the biggest exam in my entire life, I studied to the utmost of my ability day and night for that exam and was prepared for the questions because of all the time and effort and thought I put into facing that test. Just as I doubt you would consider such a college student to have rolled the dice and relied on chance to pass that test, I would like to think that you would think of my efforts and decisions not as random chance. I am not a party going, devil may care college student who is willing to forgo study and just roll the dice letting what will happen be of little concern. I know that you know that about me. and know that I planned for studied for, and researched for my results. You did too. When the chemo began to not look as promising you looked into and found new treatments that you thought were right for you, and I whole heartedly applaud your efforts in that regard. You too have tried to share information. You made reasonable decisions based on information you discovered during your research, and I don't think you just decided to roll the dice either. You did what you thought best with the information you had at the time. That is the best we can do.

But I didn't employ that devil may care attitude with my cancer, I was very scared and I did whatever I could to up the likelihood that I would come out of this alive. So when you commented that some had just rolled the dice, as though they, meaning myself and some other random person, didn't really put any effort into their choice, being one of the few who went that road, it made me feel as though I just didn't care about my decision one way or the other, and that I hadn't put any effort into making it, and we both know that that is not the case. The reason I responded to your post here was that I thought someone making a decision about treatment should have respect for any decision and not consider that their choice, should they chose alternative treatment or the standard treatment or both doesn’t matter, that it is just a roll of the dice alone if they go with alternative methods.

You are right. It is easy to get in trouble here that is true. And some of the things that have been said in the last month or so have greatly upset me, causing me the dreaded, possibly the most destructive killer or all times, stress. It also allowed me to consider my place on this board and my place in my own life. You know that I care about you and have great, great respect for you and the choices you have made. I believe that you’ve made the very best wisest choices for your situation based on the information you had. I have never made light of a person's choice to go with chemo or radiation. I have delved into what might possibly help their outcome and shared information on what would help in situations that didn't have anything to do with me because I care greatly for others, but, the time has come to care for myself. Stress is the one thing that has one of the most negative effects on a person's health as I said and you and everyone else knows. Anyway, where was I going with this? Oh, right, my point in life. In trying to help everyone else, I forgot to help myself in the best way possible for me at this time. I think I now have enough information on how to proceed in my own cancer treatment, and the women on the board are just amazing in how they step up for one another here, I have so much respect for everyone. But now, I need to take care of myself in those areas that don't involve cancer. Over the last three years my focus has been singular, cancer. I have neglected my health, my art, my family to some extent, my art has completely gone by the wayside, and I have completely lost my way. By butt has suffered from many, many, hours spent at the computer.

I am saying good bye to all of you. I know you will all do well.


Best of luck----: ~ )

Best of health and a wonderful, very long life to you all,

Your true friend, with all the love in my heart, time to get on with my life,

Claudia

california_artist said:

Linda
Exactly! Those things you mentioned, those happenstance occurrences, those are absolutely attributable to the thing we call luck. You did not plan on them you didn't study for them, research for them. You were just somewhere or did some random thing and were very lucky.

Should I have a stroke I would consider myself very unlucky indeed because I am doing nothing to prevent a stroke or heart attack for that matter, of any import. It is my conscious choice to let luck play a part in my health in that area. A situation, now that I'm thinking about it, that I plan on again doing my due diligence in researching, to avoid. Until I consciously take the time to do that, luck or lack of it will play a huge part in what happens.

But with the cancer, I was in essence a college student studying for the biggest exam in my entire life, I studied to the utmost of my ability day and night for that exam and was prepared for the questions because of all the time and effort and thought I put into facing that test. Just as I doubt you would consider such a college student to have rolled the dice and relied on chance to pass that test, I would like to think that you would think of my efforts and decisions not as random chance. I am not a party going, devil may care college student who is willing to forgo study and just roll the dice letting what will happen be of little concern. I know that you know that about me. and know that I planned for studied for, and researched for my results. You did too. When the chemo began to not look as promising you looked into and found new treatments that you thought were right for you, and I whole heartedly applaud your efforts in that regard. You too have tried to share information. You made reasonable decisions based on information you discovered during your research, and I don't think you just decided to roll the dice either. You did what you thought best with the information you had at the time. That is the best we can do.

But I didn't employ that devil may care attitude with my cancer, I was very scared and I did whatever I could to up the likelihood that I would come out of this alive. So when you commented that some had just rolled the dice, as though they, meaning myself and some other random person, didn't really put any effort into their choice, being one of the few who went that road, it made me feel as though I just didn't care about my decision one way or the other, and that I hadn't put any effort into making it, and we both know that that is not the case. The reason I responded to your post here was that I thought someone making a decision about treatment should have respect for any decision and not consider that their choice, should they chose alternative treatment or the standard treatment or both doesn’t matter, that it is just a roll of the dice alone if they go with alternative methods.

You are right. It is easy to get in trouble here that is true. And some of the things that have been said in the last month or so have greatly upset me, causing me the dreaded, possibly the most destructive killer or all times, stress. It also allowed me to consider my place on this board and my place in my own life. You know that I care about you and have great, great respect for you and the choices you have made. I believe that you’ve made the very best wisest choices for your situation based on the information you had. I have never made light of a person's choice to go with chemo or radiation. I have delved into what might possibly help their outcome and shared information on what would help in situations that didn't have anything to do with me because I care greatly for others, but, the time has come to care for myself. Stress is the one thing that has one of the most negative effects on a person's health as I said and you and everyone else knows. Anyway, where was I going with this? Oh, right, my point in life. In trying to help everyone else, I forgot to help myself in the best way possible for me at this time. I think I now have enough information on how to proceed in my own cancer treatment, and the women on the board are just amazing in how they step up for one another here, I have so much respect for everyone. But now, I need to take care of myself in those areas that don't involve cancer. Over the last three years my focus has been singular, cancer. I have neglected my health, my art, my family to some extent, my art has completely gone by the wayside, and I have completely lost my way. By butt has suffered from many, many, hours spent at the computer.

I am saying good bye to all of you. I know you will all do well.


Best of luck----: ~ )

Best of health and a wonderful, very long life to you all,

Your true friend, with all the love in my heart, time to get on with my life,

Claudia

california_artist said:

Linda
Exactly! Those things you mentioned, those happenstance occurrences, those are absolutely attributable to the thing we call luck. You did not plan on them you didn't study for them, research for them. You were just somewhere or did some random thing and were very lucky.

Should I have a stroke I would consider myself very unlucky indeed because I am doing nothing to prevent a stroke or heart attack for that matter, of any import. It is my conscious choice to let luck play a part in my health in that area. A situation, now that I'm thinking about it, that I plan on again doing my due diligence in researching, to avoid. Until I consciously take the time to do that, luck or lack of it will play a huge part in what happens.

But with the cancer, I was in essence a college student studying for the biggest exam in my entire life, I studied to the utmost of my ability day and night for that exam and was prepared for the questions because of all the time and effort and thought I put into facing that test. Just as I doubt you would consider such a college student to have rolled the dice and relied on chance to pass that test, I would like to think that you would think of my efforts and decisions not as random chance. I am not a party going, devil may care college student who is willing to forgo study and just roll the dice letting what will happen be of little concern. I know that you know that about me. and know that I planned for studied for, and researched for my results. You did too. When the chemo began to not look as promising you looked into and found new treatments that you thought were right for you, and I whole heartedly applaud your efforts in that regard. You too have tried to share information. You made reasonable decisions based on information you discovered during your research, and I don't think you just decided to roll the dice either. You did what you thought best with the information you had at the time. That is the best we can do.

But I didn't employ that devil may care attitude with my cancer, I was very scared and I did whatever I could to up the likelihood that I would come out of this alive. So when you commented that some had just rolled the dice, as though they, meaning myself and some other random person, didn't really put any effort into their choice, being one of the few who went that road, it made me feel as though I just didn't care about my decision one way or the other, and that I hadn't put any effort into making it, and we both know that that is not the case. The reason I responded to your post here was that I thought someone making a decision about treatment should have respect for any decision and not consider that their choice, should they chose alternative treatment or the standard treatment or both doesn’t matter, that it is just a roll of the dice alone if they go with alternative methods.

You are right. It is easy to get in trouble here that is true. And some of the things that have been said in the last month or so have greatly upset me, causing me the dreaded, possibly the most destructive killer or all times, stress. It also allowed me to consider my place on this board and my place in my own life. You know that I care about you and have great, great respect for you and the choices you have made. I believe that you’ve made the very best wisest choices for your situation based on the information you had. I have never made light of a person's choice to go with chemo or radiation. I have delved into what might possibly help their outcome and shared information on what would help in situations that didn't have anything to do with me because I care greatly for others, but, the time has come to care for myself. Stress is the one thing that has one of the most negative effects on a person's health as I said and you and everyone else knows. Anyway, where was I going with this? Oh, right, my point in life. In trying to help everyone else, I forgot to help myself in the best way possible for me at this time. I think I now have enough information on how to proceed in my own cancer treatment, and the women on the board are just amazing in how they step up for one another here, I have so much respect for everyone. But now, I need to take care of myself in those areas that don't involve cancer. Over the last three years my focus has been singular, cancer. I have neglected my health, my art, my family to some extent, my art has completely gone by the wayside, and I have completely lost my way. By butt has suffered from many, many, hours spent at the computer.

I am saying good bye to all of you. I know you will all do well.


Best of luck----: ~ )

Best of health and a wonderful, very long life to you all,

Your true friend, with all the love in my heart, time to get on with my life,

Claudia

Songflower said:

Treatment Choices
Claudia,
I respect you for all the research you did when you decided not to take chemo. You have studied diet and environmental factors and worked hard at doing them. However, I believe there are other factors and we need to learn more. My Gyn Onc told me 30% of serous cancer disappears and no one knows why.

When I had breast cancer 12 years ago I had lobular ER+ cancer. That is all they knew. This is not a super invasive cancer compared to other cancers. Now breast cancer is treated and tested very differently. Breast cancers are very different, HER positive is very agressive and Herceptin has been found to shrink tumors for these women and save their lives. We learned this by studying the cancers and devising treatment.

We have also learned there are different uterine cancers, some more agressive than others. MMT, endometroid, sarcoma, serous, and probably others that have not been named yet. I have serous and I believe my serous is different from many others on the board. I saw the characteristics (and they can only do about 10 or 12) and I was positive for all agressive typing of cancer cells. I almost fainted when I saw that. I also wonder about my serous cancer, it has never gone in the lymph. Why is that? Most women on the board have mets that went to the lymph. Again, I think my cancer is different. I took tamoxifen so could that cause that? Who knows? All of my mothers generation had hysterectomies so I can't get an idea for genetics. But I believe we have to study these cells.

I have worked at diet and stress control. Am I a failure in your eyes? I don't think so. I just think my cancer is very agressive and I think the chemo thus far has kept me at the three year point I am at.

I knew a woman with breast cancer who told me, "I was a vegen and a jock with no family history and that didn't stop me from getting breast cancer." We have to be careful when we find treatments that worked for us. Perhaps that treatment could be a disaster for someone else.

I think when some of us talk about a crap shoot they are talking about life. Some things happen and we do not know why or cannot control some things. Surely, by the time we all get old we have touched tragedy in some way and understand what people mean by a crap shoot.

Please do not take all of this personally. We appreciate the studying and work you have done. But we all have to look at the big picture as cancer is caused by so much we don't understand. I wonder why you got the cancer in the first place?

So let's get thick skinned and have some good discussions. Let's realize that one treatment may not work for all of us. We can trade what we know. A friend of mine just told me her friend has uterine cancer (I don't know the type) with tumors in the lung. She must be ER+ as she took Femara (Aromatase Inhibitor) and her tumors have shrunk 75%. I think that is so hopeful for those with ER positive typing.

I wonder if you were ER positive and the diet decreased your estrogen levels. There is so much to study! I think you need a microscope next. Have you thought about going back to school to study? We need people with good minds. Those of us with agressive cancer need you to keep studying.

Love,
Diane

ingridjee said:

I was recenly diagnosed w/ high grade undifferentiated sarcoma
I understand that this is a rare uterine cancer that spreads fast.
Though the gynecologist told me is a MMMT but the pathology reports says: Malignant Neoplasm, agressive high grade undifferentiated sarcoma or Ewings Sarcoma (The oncologist said she does not agree w/ Ewings because its incidence is more in Bones, males and children, so she sent it for a second opinion)
My doctor says she is sure I have metastasis in my lungs and we need to know how much. So I have a cat scan of pelvis and lungs and a radical hysterectomy set up in two weeks and after that at least 6 months of chemo.
The chemo scares me more than the surgery.
I am searching for diets, changing some habits, exercising more.
Also, I do not know the stage, and by reading around here, I think I will know after the surgery?
I am also learning how does FMLA, STD, LTD works, as she said 6-8 weeks to recuperate and be able to work. I wonder how will I feel with chemo and if I will lead a normal life when having it. Will I feel fine to work, exercise? eat properly? Trying to figure out how to lead a almost normal life after this shocking diagnosis. I also did not read good prognosis for this type of cancer so it is good to meet survivors and people treating it.

jmsaussy said:

MMMT survivor with lung mets
don't want to bore you with the whole story...see the post i just made...my first....you are not alone and while it is a long road you can do this! My diagnosis was 4 years ago and after 5 surgeries, radiation and chemo I am feeling great. Don't listen to the numbers...if you are the blank % that survives then that is 100% survival for you. The lung mets can be resected...it is not fun but my wonderful cardiothoracic surgeon called it "cherry picking" and said we could do it for years if the nodules came back...so far so good...the chemo is hard but doable. What are they recommending and where are you? if you want to talk more, I am willing. I have not met anyone with my diagnosis so this is new for me too. If you have lung mets it is Stage 4. I tried to change my diet, but all I have really done is eliminate things like chicken, eggs, milk, cream with hormones in them (organic...but not everything, and done with moderation in mind). I take vitamins (when I remember) and try to limit white sugar (I tell myself raw sugar is better in my coffee It is really hard to exercise when you feel like crap so if you can, great, if not, then give yourself a break. I was able to run on the last week before my next chemo treatment because that is when I felt ok...I needed two blood transfusions and the neupogen shots made my bones hurt but take the pain meds!!! I resisted and once I decided I was going to quit trying to tough it all out, it was so much easier. I worked the whole time except when I was an inpatient for 3 days for chemo and I worked from my hospital bed when I felt like it. Ask your employer if you can keep track of hours and flex your time. I did not use my LTD policy or STD policy for my primary job, but was forced to for a second job I had (STD...I fought it but they forced me to do it)...I quit that job several months after I finished chemo...I continued to raise my teenage daughters and I believe that may have been harder than this cancer thing!
Find a good gyn surgical oncologist and have the hysterectomy asap...if you have lung mets and they can be resected, do it asap...I decided I wanted a well trained surgeon and would forgo his less than spiffy bedside manner...my cardiothoracic surgeon was amazing and my sarcoma specialist in Dallas and NYC were instrumental in my recovery. I am a physician and knew more than I should have and felt very alone during this despite the best efforts of my friends and family. You are not alone, just in a very unique club that none of us wanted to join! Let me know what helps you as you begin this journey...J

Gracegoi said:

Quote from Linda
"Posting on


Quote from Linda

"Posting on this board we do have 1 or 2 women who rolled the dice, refused adjuvent treatment after their surgery, and got SOOOOOOO lucky and their cancer never came back."

Maybe that needs to be stated as "didn't come back within the usual two year reocurance window"


"Most of us try to up our chances by eating a healthy anti-cancer diet and exercising and controlling our stress. But it is pretty much a crap shoot. You need to do what you feel is best. But please don't make a decision based on emotion alone, or some worry about how you'll look with a bald head."

I have to admidt after rereading this I had a negative reaction and can see why Claudia felt diminished in all she has worked for and for my own reasons for my desision.

It takes alot of faith and self encouragement to keep up my dietary changes. After two years I find myself slipping into my old negative dietary habits I had prior to my cancer ones that I know did a number on my immune system . I went through all the emotional fears and I did my own research.

A 22% increase in survivval rate for stage1 with CT and radation is not a "cure"

And such very poor research numbers just wasn't enough for me side with doing the chemo/rad and the quality of life after chemo "for me".

If I had a suportive family lots of money and other things available to me I might of said well yes Ill do the Chemo. It was truly a final blow I was gonna fight.

This decision is so very personal and need not be refered to as a close your eyes "roling the dice " The whole weight of a persons life goes in the balance . One doctors have no clue about .

Every persons decision is the right one.

As I struggle warding off the feelings of (I did the wrong thing) today and let fear and worry enter my domain again I felt the need to express this to regain my resolve.

I will stand strong if I do reoccur and not dance the " darn. I didn't do everything I could have done " dance because I refused the usual adjunctive treatment.

They have not proven that there is a 100% cure for stage 1 just a small margine of not reocurring over 3, 5 years.

There are those who had stage one who did the adjunctive therapy and reocured extra pelvically. this went into my desision making too.

All said I would never suggest anyone follow my path because Im just a cancer survivor , not a doctor and cannot take on that responsibility for a persons diagnosis.



Gracegoi

So happy that you came and told us, Jan.  I hope you and your family celebrate everyday!

a big hug for me. May she have many more years to enjoy life and her family.