ANYONE WITH UPSC NOT HAVE A RECURRENCE????

daisy366 said:

Confused
Are you saying you were not diagnosed with UPSC? What exactly was your diagnosis, stage, and medical procedures (just biopsy, no TAH)?

attacked - huh????
I did not personally feel attacked (don't know where you came up with THAT fantasy!), but you KNOW you have gone after many others in the past. As MaryAnn said, you are the common thread when there have been any disagreements here.

There is a huge difference between an educated, trained, and experienced medical doctor privately giving a patient advice — and YOU giving it (and also criticizing choice of treatment in a public forum).

As far as the better lifestyle/diet advice, you have given it here — over and over and over. Like we are little kids who do not speak your language. Guess what? —— WE GET IT!

Hannah

nancygt said:

good for you
Good for you, Hannah !
I started coming to the board less lately because of the statements made to Linda P. along this vein.
perhaps everyone should read the Cure magazine article this month on how complex the causes of cancer are-or the excellent best seller The Emperor of All Maladies. the vast medical and research complex are struggling to find out the causes for cancer but Calif. Artist knows-it is our behaviors. I guess she believes that all lung cancer patients smoked-my best friend just died of lung cancer and never smoked a day in her life. Like the Cure article said, not all smokers get cancer ,. And heart disease has long established medical research that diet,high chloesterol,etc are life style changes that need to be made. I don't know about the rest of you but I hardly feel my behaviors brought this on and most articles feel it is genetics rather than diet- I guess I should blame my mother and grandmother..
A healthy diet and many of the health food items discussd here make sense in keeping your body healthy to handle the rigors of the treatments.But to rely on those solely is very dangerous advice and if one person ignores "educated,trained and experienced" medical advice, that is unacceptable.
Also wasn't this entire thread entitled "Anyone with UPSC not have recurrences". The treatment and survival rates for endometrial carcinoma are quite good- for late stage USPC (and sarcoma) are totally different. So i guess i am not sure why she was responding if she did not have UPSC and by her own words did not have a recuurence as it was never gone-not sure about the reason no lymph nodes were bopsied-i had 13 bopsied and none showed cancer but had recuurence 6 months after surgery/chemo/twotypes of radiation therapy//more chemo as initial post surgery treatment. i have gotten second opinions at M.D. Anderson and Moffett and will continue to trust highly qualified meidcal personnel who hate this disease as much or more than we do and would to have a simplistic solution..
And if it sounds a little angry and negative, I am sorry -but I had stage 3 UPSC, and am on my third recurrence, am dealing with "treatable but not curable" and tumors that started growing again in all sections of my lungs only 5 months after Cisplatin/Doxirubicin shrank them 30% . I have enough trouble keeping my spirits up without someone lecturing me on how behaviors gave me my cancer and will impact my ability to fight it.
I apologize to the ones advising peacemaking but if many of us are troubled by these comments and the sanctimonious, preachy style, maybe we should have the courage and freedom to say so.If not we lose a great deal of the value here.
And, California Artist, please do not respond as I agree with Hannah-you have said it over and over and we get what your views are.

AMEN, Nancy!!

AMEN, Nancy!!

JoAnnDK said:

you rock, Nancy
Way to say it all, Nancy!

I have just started reading "Emperor of All Maladies" AND am having genetic counseling, so I have come to realize just how complex the causes of cancer are. I also have learned that once a gene mutates and loses its tumor-suppressing ability, nothing can restore it. No diet, no lifestyle change, no prayer, no mind-over-matter, no supplement, no herb, no tea........ nothing. And that gene may have mutated in utero. Or as a result of aging (the major cause of acquired mutation of gene suppressors). That is why something like 80% of all cancer is found in those over 65.

I know there is a lot of research being done on gene repair, but the problem with the tumor suppressant genes is that a person does not find out that it has mutated until there is a cancer diagnosis. Even if the gene COULD be repaired, the damage is already done, with the cancer running rampant.

This is a very simply written explanation http://cancer.stanford.edu/information/geneticsAndCancer/genesCause.html

and I found the CURE article to be excellent.

Thanks, Nancy

JOANN

Emperor of All Maladies
I just found an interview with the Pulitzer Prize-winning author of this book (from CURE magazine):

http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1806

and here is a review from the same source:

http://www.curetoday.com/index.cfm/fuseaction/blog.showIndex/kathylatour/2011/11/28/The-Emperor-of-All-Maladies-A-Biography-of-Cancer

the last paragraph is interesting.

I Will Survive said:

attacked - huh????
I did not personally feel attacked (don't know where you came up with THAT fantasy!), but you KNOW you have gone after many others in the past. As MaryAnn said, you are the common thread when there have been any disagreements here.

There is a huge difference between an educated, trained, and experienced medical doctor privately giving a patient advice — and YOU giving it (and also criticizing choice of treatment in a public forum).

As far as the better lifestyle/diet advice, you have given it here — over and over and over. Like we are little kids who do not speak your language. Guess what? —— WE GET IT!

Hannah

Hurray!
I feel vindicated. I tried to make this point a while back but I just didn't have the words. Thank you Hannah for voicing what I have been thinking ever since I first joined this board.
My husband compares California Artist to someone with a paper cut telling someone with a sucking chest wound all they need is a band-aid.
Honestly in her defense, I don't think she realizes how cavalier her advice comes across to those of us who have been given the diagnosis of late stage UPSC and are struggling with the decision of what kind of treatment to take.
Hopefully now that we know where she is coming from, we can take her advice or leave it without so much agonizing over the implications.

Laura

I Will Survive said:

Lecture
"Cannot expect to not change any behaviors after having surgery to remove your cancerous tumor and not have your cancer return".

Grace, I think this was more of a lecture to others than it was a revelation of what she had had done. Note the use of the word "your" rather then "my".

Yes, it is easy to miss things.

Refusing chemo and other treatment would be a lot easier to do if one is stage 1A than 3C. In my humble opinion, of course. Chiding later-stage patients for using these treatments is insensitive at best.

; ~ )
:~ )Short version:

In response to not having a recurrence. The short story is, I had a cancer diagnosis, had surgery. Surgery labs showed UPSC. I opted not to have chemo/rad due to health issues. PET/CT showed node growth over a six month period. I dedicated myself to diet/lifestyle changes in the extreme. No signs of cancer at this time. One month away from four year anniversary of diagnosis.

The long version: After showing symptoms for two years, I finally found a doctor who would do an endo biopsy to see if I did in fact have cancer.

While the endometrial biopsy in the gynecologist’s office, which only rendered a tiny bit of tissue, only showed the usual uterine cancer type, the tissue taken during the gyno/onc surgery where uterus, ovaries, cervix and part of omentum were removed and labs done, did show UPSC and two enlarged lymph nodes close to the uterus.

So, I had cancer.
Got the usual surgery.
Showed 3cm tumor and two nodes around l cm in size.
Chose not to have any further treatments.
Opted for PET/CT.
Began using alternative therapies to try to slow the cancer cell’s growth rate.
I did figure that if I got into trouble with mets, I would reconsider chemo/radiation.
There was growth of the nodes between the first and second PET/CT, a six month period.
Asked for a biopsy of nodes. Onc was only willing to do have me get a CT every two months. That really sounded like a bad prospect for my future health and my gynecologist also advised against it.
Committed to extreme diet, lifestyle changes.
Next PET/CT, approximately one year later, showed no metastatic activity is I think how they put it, and showed no further lymph node growth.

So sorry if anyone looks at the following as a lecture but I am trying to explain the reason behind my actions and thought is all.

According to the current standards of assessing remission, it appears to me that an absence of growth, or a shrinkage of a tumor or node, is considered remission. Even so, cancer cells can reside anywhere and everywhere and not show up on any scan. That’s why for me, I don’t assume that I am cancer free, only cancer not detectable. While by medical standards, I would be considered in remission, I feel there are still millions of UPSC cancer cells running around in my body. That is the reason that I try to be relatively diligent in my efforts to keep cancer from again getting a hold.

Different things bring comfort to people. For some it is the one two punch of chemo and radiation. They can do a stellar job at knocking down many cancers.
I couldn't convince myself that they would work for me, so, I chose something else. That’s all. I applaud all of those who have been brave enough to go thru those treatments. I had other health issues, liver and heart mainly, that made me very fearful that I wouldn't be able to go thru the treatments without serious consequences, to both my current and future health.

I had made a post of things that I had collected over the last few years that I thought could help in the fight against cancer, regardless of the type of treatments one might choose.

It was a compilation of things I had read, things that other women on the board had said they were doing and had worked for them, studies from universities, trials and such. My hope was that some of those, particularly those who were looking for something to do, to feel in control to some extent, could easily do. Unfortunately, that was not well accepted. Anyone who would like to get that information, can just send me a private message and I would be most happy to share so you don’t have to dig thru this whole discussion board.

Since almost everyone gets Taxol, there is info on turmeric’s beneficial effect on how cancer cells react to that particular chemo in the presence of turmeric. I will find that and start a new post with that info for anyone interested.


Lastly, I am certainly not proposing that anyone else try this at home and forgo current medical treatments, I am only telling what I did, why I made the choices I did, and how it's going.

culka said:

I'm afraid nobody needs only a band-aid
I was diagnosed via hysteroscopy and D&C with UPSC, clear cell and endometroid in April 2008. That time they know right the way (and I have no idea what are they talking about) that it is grade 3.
Thank God for so slow health care system in Canada, but reading the board US is not much better. We have enough time to start an offensive. During those six weeks we were glued to computer or I had needles all over the place. My hubbie is acupuncturist/herbalist. Half of that waiting time I was taking herbs capsules size 00 (36 per day, yummy!!!) and working 2 full time jobs.
After surgery I had no more UPSC (according pathologist) and clear cell was “seen on the previous curettage”. The uterus was already healthy again and only residue of tumor was in cervix stroma. In other words that time stage IIb, now stage II. They took 12 lymph nodes and I was lucky enough none of them got cancer cells. Maybe 13th one would have some and I would be pushed to chemo.

So now tell me. What should I do? Consider myself as a UPSC gal or not? That papillary s.it was there for sure, somehow disappeared. My radiologist/oncologist talked only about endometroid.
Yes, I enjoy every day, but somewhere deep inside I always waiting for another attack. That’s why I’m doing all the weird stuff on top of the diet changes. By the way diet is only one tiny bit of life and I felt awesome on about 14th day of my 21 days fast.

Difference between stage Ia and stage IIIc is one lymph node with few cancer cells. Fran and Linda could talk about that, Fran was stage I and Linda stage IIIc UPSC and they are gone now. These stories keep me going to find more to keep my immune system in tip-top shape. Health is going from inside out and only we are responsible for our well being, nobody else.

Culka - consider yourself a survivor
Culka:

In my opinion, I believe that everyone's diagnosis is different and that the medical community uses a broad classification when it comes to UPSC/Uterine/Ovarian, etc. Take my case, for instance, I was diagnosed as endometrial adenocarcinoma but was being treated as ovarian. Because at first they weren't sure what type I had because it was found both in the uterus and on my one ovary. They had to rule out MM??? too. It is really confusing but it seems that the top line of treatment for all of it is taxol/carbo as the first line of defense. I have heard of so many different treatments and strategies that I believe that you do whatever feels best for your own situation and that is how I have continued with mine.

I had to have a separate surgery for staging (because they didn't know I had anything until after my hysterectomy), the staging surgery found nothing and all lymph and washings were clear and negative. My doctor said at that time that what I had was treatable (did not say cured). And he had suggested chemo treatment as a precaution for any rouge cells. So I did the chemo (ended up on Gemzar/Carbo).

That was back in 2005. In 2009, a CT scan showed a mass and my new doctor (old one retired) wanted to do chemo right away, surgery, chemo, etc. and advised me that where my mass was located that I would probably have a permanent colostomy. (this was before any biospy) I went to another doctor who did a biopsy (it came back positive) andindicated that he suggested radiation. But radiation/oncologist said once I have radiation there I can no longer get any more radiation there and if it came back it could lead to my demise. I was also told at that time that surgery would be impossible.

Went to another doctor. Looked at everything. Said they would do surgery. Had surgery done in February of 2010. Also, fixed my hernia from first surgery. Everything came back negative (except for one little lymph node which had microscopic cells). I could have radiation if I wanted it or wait and see. I am on the wait and see treatment. Since then I have had two PET scans and one CT scan which were all negative.

These were choices that I made and at times were very tough decisions but at least I had been able to make the choice (right or wrong). I still do not know what catagory that I am in. At the initial diagnosis I was Grade 2, Stage ii/iiia. Because the medical doctors weren't sure, I believe that is why they left my port in for five years! (which I just recently had removed).

Culka, I gave you my long version of saying that it doesn't really matter what catagory you are in, but that you have to be vigilant on your care. When you feel something no right, bring it up. Get your scans when you can. I believe it is harder in Canada to get scans than in US. I get a scan every 6 months right now. But other than that, be positive and live life to the fullest. Some days it is hard because they creep up when we lose a love one or when we don't feel up to par or when we here of someone's diagnosis.

So, as I said in the beginning, just consider yourself a survivor!