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

Angelasmom2
Posts: 146
Joined: Jul 2010

My daughter has cancer of the uterius 3c, undifferentiated. Any survivers out there? I desparetly need to hear from you. Linda

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lindaprocopio
Posts: 2022
Joined: Oct 2008

I guess I'm not sure what you are asking with the 'undifferentiated' part of your description. Do you know the cell histology and grade? (papillary serous?, clear cell? sarcoma?) I think all of the ladies here with Uterine Papillary Serous carcinoma (UPSC), and there are quite a few for such a rare cancer, have at best, POORLY differentiated cells. If you can tell us a little more of what it says in her pathology report, we can probably help more. ((((Hugs)))). My heart goes out to you, as I would so rather have this cancer myself than have one of my children have it!

Angelasmom2
Posts: 146
Joined: Jul 2010

Thank-you. I would do anything if I could trade places. I will die happy if all my children and grandchildren are still living happily and healthy. That is my prayer. The lab report said undifferentiated/endometroid. They are suppose t meet Friday to explain it farther and explain the plan of action. I do know they will be going after it very aggressively. I have read that undeferentiated is a cancer cell that is immuture and divides more quickly, therfore usually is a fast spreading cancer cell. It is a scary thing for me.

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kkstef
Posts: 706
Joined: May 2008

I am so sorry to hear about your daughter's diagnosis. This is a time to get your list of questions together so when you meet with the onologist you can get some answers. Be sure to get the type of uterine cancer, Grade and Stage as that will determine the treatment plan and will help you understand better what is going on.

I am surmising that your daughter has endometroid adenocarcinoma. I found this site which does a nice job of explaining well differentiated vs. undifferentiated. Grade 4 is undifferentiated and more aggressive....with well differentiated being Grade 1 and least invasive.

http://www.cancer.gov/cancertopics/factsheet/Detection/tumor-grade

Keep us posted and feel free to ask any questions that you have.

Hugs to you and your daughter! Karen

ingridjee's picture
ingridjee
Posts: 6
Joined: Aug 2011

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
Posts: 7
Joined: Aug 2011

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

RoseyR
Posts: 464
Joined: Feb 2011

Thanks so much for sharing all of this.

Have just finished nine months of treatment (hysterectomy, six rounds of taxol/carbo, and 24 sessions of pelvic ratdiation) after a diagnosis of MMMT uterine cancer, caught at stage IB (with no apparent lymph node spread), but a fairly large tumor, 6 centimeters.

So know I have to be vigilant in watching fo recurrence and am already trying to decide what I'lll do if and when I have that first recurrence.

Am being treated at a major cancer center in large city, East coast, ranked among top ten in nation. But it's not Sloan or MD Anderson, so wonder if I should find a good "sarcoma specialist," such as you've had, before I recur.

Are you free to share their names? If not, that's fine.

In meantime, thanks so much for the hope your narrative provides. Good to know that lung mets don't always mean our demise within a year!

Appreciatively,
Rosey

RoseyR
Posts: 464
Joined: Feb 2011

Thanks so much for sharing all of this.

Have just finished nine months of treatment (hysterectomy, six rounds of taxol/carbo, and 24 sessions of pelvic ratdiation) after a diagnosis of MMMT uterine cancer, caught at stage IB (with no apparent lymph node spread), but a fairly large tumor, 6 centimeters.

So know I have to be vigilant in watching fo recurrence and am already trying to decide what I'lll do if and when I have that first recurrence.

Am being treated at a major cancer center in large city, East coast, ranked among top ten in nation. But it's not Sloan or MD Anderson, so wonder if I should find a good "sarcoma specialist," such as you've had, before I recur.

Are you free to share their names? If not, that's fine.

In meantime, thanks so much for the hope your narrative provides. Good to know that lung mets don't always mean our demise within a year!

Appreciatively,
Rosey

jmnye
Posts: 14
Joined: Feb 2010

Yes, I was diagnosed with uterine cancer Stage IIIc a little over a year ago. I had sugery in April 2009. Then followed up with 4 rounds of chemo and 25 days of radiation.

I can tell you that I am fully recovered. I have been back at work since January and feel 100%.

I had a CT scan at 1 yr out and it was 100% clear. I am clear, clean, and healthy!

Jane

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norma2
Posts: 486
Joined: Aug 2009

I was diagnosed last summer with cancer Stage IIIC Grade 2. Had surgery Oct2, 25 rounds of radiation, chemo....etc. I feel great. Last checkup was no evidence of disease. Going for a CAT scan in 2 months for my 6 month post treatment checkup.

Please let us know how you and your daughter are doing.

bea-mil's picture
bea-mil
Posts: 106
Joined: Jun 2010

Classification of Endometrial Carcinoma
--------------------------------------------------------------------------------

Adenocarcinoma - Clear cell
Adenoacanthoma - Squamous cell
Adenosquamous - Mixed
Serous (papillary serous) - Undifferentiated
Mucinous - Mucinous

--------------------------------------------------------------------------------
Information from Berek JS, Hacker NF, eds. Practical gynecologic oncology. 2d ed. Baltimore: Williams & Wilkins, 1994:285-326.

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kansasgal
Posts: 117
Joined: Aug 2009

From the National Cancer Institute’s website

http://www.cancer.gov/cancertopics/pdq/treatment/endometrial/HealthProfessional/page3

Cellular Classification of Endometrial Cancer

The most common endometrial cancer cell type is endometrioid adenocarcinoma, which is composed of malignant glandular epithelial elements; an admixture of squamous metaplasia is not uncommon. Adenosquamous tumors contain malignant elements of both glandular and squamous epithelium;[1] clear cell and papillary serous carcinoma of the endometrium are tumors that are histologically similar to those noted in the ovary and the fallopian tube, and the prognosis is worse for these tumors.[2] Mucinous, squamous, and undifferentiated tumors are rarely encountered. Frequency of endometrial cancer cell types is as follows:

1. Endometrioid (75%–80%)
A. Ciliated adenocarcinoma.
B. Secretory adenocarcinoma.
C. Papillary or villoglandular.
D. Adenocarcinoma with squamous differentiation.
i. Adenoacanthoma.
ii. Adenosquamous.
2. Uterine papillary serous (<10%).
3. Mucinous (1%).
4. Clear cell (4%).
5. Squamous cell (<1%).
6. Mixed (10%).
7. Undifferentiated.

References

1. Zaino RJ, Kurman R, Herbold D, et al.: The significance of squamous differentiation in endometrial carcinoma. Data from a Gynecologic Oncology Group study. Cancer 68 (10): 2293-302, 1991. [PUBMED Abstract]

2. Gusberg SB: Virulence factors in endometrial cancer. Cancer 71 (4 Suppl): 1464-6, 1993. [PUBMED Abstract]

I edited the classification using A-D and i-ii because the indentations from the original were lost.

It would appear that your daughter has been diagnosed with the last type. I am interested to hear more about your daughter's diagnosis and treatment recommendations. Please keep posting to the board.

Following full abdominal hysterectomy (but omentum not removed) April 2009, I was diagnosed with endometrioid grade 2 staged at 1B and UPSC grade 3 staged at 1A. I had 6 rounds of carbo/taxol at 3-week intervals infused through a chest port and 3 rounds of vaginal brachytherapy. I am currently in remission and return for another checkup at the end of August. I feel fine, except for underlying fatigue. I was able to return to work full time in January.

Wishing both of you the very best.

Sally

sailboat
Posts: 1
Joined: Aug 2011

I was diagnosed 6/18/11 with undifferentiated high-grade endometrial stromal sarcoma without hormone receptors. Radical hysterecotomy without spread or lymph nodes affected. Stage 1B. Pathology reports checked and now being re-checked. Chemo and radiation recommended by tumor board.

I feel wonderful with no pain or symptoms and don't know why I should take drastic medicines when there is no proof cancer remains. What has happened to all of you who wrote before in the past year? I've been searching the net for over a month trying to find real live people with this disease. I want to know what works and why. I want to know if I can survive without the treatments. Did anyone use a treatment other than chemo and radiation?

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lindaprocopio
Posts: 2022
Joined: Oct 2008

Adjuvant chemo and radiation is treatment given as INSURANCE after surgery, to catch any stray cancer cells that may be hiding out micoscopically in your body, too small to be seen on a scan. That is what your tumor board is recommending. 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. But that gamble was HUGE. Because if you can irradicate every single cancer cell "from the get-go", you can be cured. But if your cancer comes back later, it will be considered incurable. That's why over 90% of the women posting here with Grade 3 or Grade 4 cancers DO undergo the adjuvant chemo and radiation.

All that being said, I did all the adjuvant therapy recommended to me, and my cancer still returned. I was one of the unlucky ones, but we have MANY women posting here who finished their adjuvant chemo and radiation and their cancer did not come back. 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. Chemo and radiation for uterine cancers is very do-able, not near as horrible as you may imagine it will be. Do your research and ask questions until you truly understand what your risks are either way. You want to take into account the combined expertise behind the recommendation from the tumor board, and maybe take your pathology to another facility and get a second opinion if you are undecided. ((((Hugs))). Each of wrestled with what you are going through. Over 90% of us did the adjuvant chemo and radiation, not wanting to have to look back and kick ourselves that we didn't do everything we could to try and beat this thing. Even though my cancer recurred, I have no regrets about the path I took. I've had a LOT of chemo in the almost 3 years I've been at this, and I was never really sick from it. Please let us know what you decide.

california_artist
Posts: 850
Joined: Jan 2009

Luck?? Seriously, with all the research that I've done. with the consideration I gave to how cancer acts as a cell, with all the investigation I did on how I could best change the things I was doing in my life to not support cancer's growth and metastasis, with my further investigation into taxol's track record on those cancer's such as UPSC, and the fact that while it does reasonably well with ER/PR + cancer cells, it tends to fall short on ER/PR - cancer cells, my decisions were completely reasonable and well thought out. I did not just sit back and say oh well I guess I don't need chemo and I will just keep on with things as they were. Had I done that, then it would truly have been all abut luck, but I am not a gambler, and I did not gamble in this instance. I made a reasonable, well thought out decision.

I fought tooth and nail to learn everything I could and then to apply those things to keeping me alive. I have taken the time and effort out of my life to share what I learned with the women on this board, with the thought that it might benefit some of them. I believe I have done a stellar job and do not consider my state of health as far as cancer is concerned to be attributable to luck. more than one or two of us chose to forgo standard treatment who are still without recurrence.

I would not recommend what I chose for the faint at heart, because it is very difficult to take a path seldom taken. It takes more courage than I ever knew I had. It takes many middle of the night research sessions and book reading to find the pertinent information.

In the beginning, when everyone was doing so well on chemo and radiation, there was a day, when I doubted myself, but after mulling it over, I just determined to try that much harder. And then when many of those who chose chemo began to recur so shortly after finishing chemo, I felt that I had chosen the correct path for myself. It would not have been right for you because you had no belief that it would work for you. A firm belief that what I was doing would work for me and the strength I gained from my determination and belief that my efforts would succeed, no doubt had a huge influence on the outcome thus far, of that I am certain.

I am so very sorry for how things are going for you, I truly am. Honestly, just as I don't consider myself lucky, I don't consider you unlucky either. We each made well thought out choices. I, for one, did not employ dice.

Sincerely,

Claudia

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Rewriter
Posts: 494
Joined: Dec 2009

If I had known you before I chose chemo and radiation (I joined this board only after completing my treatment), I may have opted not to go that route. You have provided me with much of the information that I believe is keeping me alive. Yours are the posts that I go to first, and I KNOW that you will leave no stone unturned in finding the most current methods of killing our cancer cells and remaining NED.

You are smart, courageous, and incredibly generous in your efforts to find answers to whatever questions we have. I have never thought that your decision to forego chemo and radiation was a gamble or that your survival has been due to luck. You are a beacon of light and a font of cutting-edge knowledge.

I'm sure that other women here will have something to say, too.

Love you,

Jill

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culka
Posts: 158
Joined: Oct 2009

I can name 3 for sure and like Jill said. If I can take time back I will be not dealing with radiation side effects. Never mind missing my 12 lymph nodes. Maybe if they take 13, last one will have some cancer cells, who knows.

But cancer journey is like soccer game with one player. I'm responsible for myself and nobody else. I saw one document about Czech doctor somewhere in South Africa. His cancer metastasized to bones already and decision about yes or no chemo was made by insurance. High stage, no reason to give him chemo. So he was on his own from the beginning. Herbs, juices, meditation, acupuncture and he is OK, or was last time I check.

Cindy Bear
Posts: 561
Joined: Jul 2009

has a mind of it's own. I was just on cbs.com, and there's a new article on "Cancer: sneakier than scientists thought" Scientists are still trying to decipher what, how, when, if and so on. How can the average person not be overwhelmed with treatment decisions. Sadly, No course of treatment is guaranteed. Everybody is different and perhaps every cancer is different, a unique diease , as unique as it's host. I think Linda is incredibly brave. She's so caring, so willing to always share her experience, her knowledge. She has contributed a wealth of research and info. to this site. She's one of my personal heroes, 10 ft tall and bulletproof. It's hard to know what to do, so many decisions to be made so quickly, under pressure. She chose to go a conventional but also highly aggressive route. That takes a lot of courage. Treatment may be "Doable" but it's still grueling.

Claudia is also an amazing woman. She is a tireless researcher who has provided a wealth of information. With knowledge comes power and hope. Above all else, hope. It's also brave not to take the conventional or traditional route.... There's also many women who choose to combine both paths, conventional and alternative/nutritional approaches. And a few who might opt for no treatment at all, because of advanced age, or other underlying health ailments. Cancer is scary and it's easy to second guess yourself, to play Monday morning quarterback. Coulda, woulda, shoulda.. and sometimes emotions run high and we take exception to something someone else said, but you're all truly an amazing group of women.
Big Hugs all around,
Cindy

maryv1119
Posts: 37
Joined: Jun 2011

Hi, my name is Mary and last year I was diagnosed with Grade 3 (poorly differentiated) just a step below your daughter. Grade is how aggressive (grade 3/4 are most aggressive) and stage is how far it's spread. My stage was 3CII - I was 40 years old at diagnosis.

I found it helpful to bring a couple people with me to my first few appointments. I took my spouse and mother-in-law. I was too overwhelmed to take in all the info.

Another thing I found helpful are on-line support groups like this one, another great support group is My Fight Against Uterine Cancer - on facebook.

I had lots of chemo and radiation after having a radical hysterectomy. It's a rough journey, but having the support of family and friends does make it better.

You and your daughter are not alone. Lots of others are on a similar journey and will be willing to lend you support and prayers.

Best wishes to you both.

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daisy366
Posts: 1493
Joined: Mar 2009

The discussion about luck had an edge that has been bothering me so I throw in my 2 cents.

Luck? Maybe, maybe not. Genetics? definitely!!!!!!!!! Let's be fair about this and not forget this major piece of the health story.

Two people get the exact same treatment and one fares well and other has bad reaction. Luck? Maybe some has to do with state of mental or physical health, but genetics is a factor. One smoker gets lung cancer and another does not - probably genetics.

A person with stage 1 cancer may make different choices than someone with stage 3 or 4. Who knows what we would do unless we have walked in that person's shoes. No one can know what another thinks. I think we all do the very best we can with what we have to work with. And without a CONTROLLED STUDY noone really knows what really helped or didn't help.
.... and some things just ARE without credit or blame.

Thanks for listening and God bless us all. Mary Ann

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Rewriter
Posts: 494
Joined: Dec 2009

Thanks, Mary Ann, for pointing out the difficulty in certain circumstances of knowing what helps and what doesn't help in the fight against cancer. We wage our personal battle based on the best information that we have available at the time combined with our personal beliefs in what will or won't work. Because we can't be absolutely certain that our treatment choices will be effective, I think it is critically important to respect and support each other EVEN WHEN, and ESPECIALLY WHEN, someone chooses a path that is different from our own. The last thing we need to do is minimize another's attempts to remain well.

I agree with you about the impact of genetics. That's why much of my reading is about how to turn the p53 gene--the one that controls tumor formation--on and off. It has been proven without a doubt that certain nutrients/foods have a tremendous impact on this gene; that's why I am making sure that I take the turmeric/olive oil/pepper combo, get enough Vitamin D, and drink my green tea (just examples).

In any case, my point is that food can affect genes, as can chemotherapy drugs. We have one goal, but there are many paths to that goal. I applaud any woman who freely shares what she has learned. Let's be a community that always welcomes alternative points of view.

Love,

Jill

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lindaprocopio
Posts: 2022
Joined: Oct 2008

When I decided on a whim to go into a place I never frequent and sit in as the 'Arts & Literature' expert on a public Trivia team, I ended up meeting the man that would become my husband and the love of my life. When I happened to sit next to a nice woman at a trade show and struck up a conversation, it resulted in a job offer that doubled my annual salary overnight. Looking back, so many of the big things that happened to me in my life came about by sheer chance, the whimsy of the cosmos. So I believe in luck. I've been blessed by chance so often. I would NEVER dare deny the role luck has played in my life, for I know few people so blessed on this earth as I have been, and a lot of my blessings were unearned, just lucky breaks for being at the right place at the right time.

So with each treatment decision we have to make, we do our research, we get expert opinions, and then we make a decision and hope we made the right one because our decisions are not black and white, right and wrong. How many times have women posted here saying "Wish me luck"? I'm not alone in thinking this is a crap shoot.

So please don't take me wrong and be so sensitive. The woman that started this thread was looking for input on a Grade 3 or 4 cancer diagnosis, for heaven's sake! It makes me hestitate to even come here anymore. :(

Debz
Posts: 6
Joined: Jul 2011

I have been reading this board for over a year without ever posting. I have been following all of your trials and tribulations and my heart goes out to each and everyone of you! Most of the time I too believe it is all a crap shoot. The vegetarian in top shape who dies early of cancer, the couch potato junk foody who is still alive in their 80's (my parents); no one knows the reasons why life is so unfair. But there is one thing I am sure of - We Are All BRAVE. No matter if we do all the recommended radiation and chemo or we decide not to have further treatment and choose other ways to stave off cancer. The person who decides alternative methods is no braver than the person who chooses recommended treatment. The bravest days in my life were when I got out of bed, took a shower, drove 45 minutes without a bathroom in sight to my radiation appointments. The bravest thing I did was to get out of that car and go through those doors, change into a gown and face the linear accelerator. The bravest days I have had were knowing the consequences of my treatment, enduring them and going back for more. I continue to be brave because of the damage radiation has done to me. It is not easy. What I have been so far is what I call "unlucky lucky". Unlucky for getting cancer and lucky for not having cancer now. Crap shoot, luck, treatment or research, whatever path we take, we should not put each other down. The Brave Bunch should embrace what each one has done, learn and live another day to fight the good fight.

HellieC
Posts: 434
Joined: Nov 2010

You are a beacon of light. You have been through so much and travelled so far on this journey and have so much knowledge to share. Your wise words have helped me in more ways than you can ever know. When I was at the point where I had to consider moving my line of sight from curative treatment to perhaps less definite options, you were there and your approach to life and this whole journey was a great support.

You're right - it is easy to get into trouble on boards like this - our words can be interpreted in many different ways by many different people - we've all seen it happen before and it will probably happen again sometime!

But your input to the boards is of such value, I would hate to think you didn't want to come here anymore!

We need you, Linda!
Kindest wishes
Helen

paris11
Posts: 132
Joined: Oct 2010

I'm with you.

Better an ounce of luck than a pound of gold. - Yiddish Proverb.

I've been missing you. How are you? How is your breathing? Date for liver treatment???

Dare I say it? Good luck.

Connie

california_artist
Posts: 850
Joined: Jan 2009

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

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upsofloating
Posts: 473
Joined: Dec 2009

Claudia, I read your post with a heavy heart. You are such a rich part of this discussion group and I am saddened that you find that it is best for you to leave us. Stress is absolutely the last thing any of us need. I have always felt that it is my worst enemy and most likely the strongest implicator to the negative health issues I have experienced. This is your life and we want you to live and experience it to the fullest. I will miss your posts, your insights, your research, your artwork - all that makes you, you. If leaving will allow you to pick up the brush again, get away from that compter and just revel in the beauty of the world around, then fly off, with the wings of Gwendolynne empowering you.
But you will be missed....
Annie

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kkstef
Posts: 706
Joined: May 2008

Dearest Claudia

I echo the eloquent comments Annie made. I have learned so much from you and always enjoyed your posts. I certainly can appreciate the importance of reducing stress and reclaiming the other parts of your life! And although I will miss you immensely the thought of you picking up your painting again brings a smile to my face! You are so very talented!!

Thank you for the knowledge and hope you have so graciously shared! You will always remain close to my heart!

Wishing you health and happiness always!

Love and kisses and BIG HUGS to you!

Karen

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Kaleena
Posts: 1067
Joined: Nov 2009

Claudia,

I will miss your posts and miss seeing your artwork. I hope you do pick up that paint brush and also spend time with family.

Just because you are going back to doing other things doesn't mean you can't drop in and say hi from time to time.

My sentiments are the same as Annie's and Karens.

I am thankful for getting to know you.

Take care,

In love and friendship,

Kathy

HellieC
Posts: 434
Joined: Nov 2010

Wishing you the best in everything you do, Claudia. Thank you for sharing your knowledge with us. I hope that this will be just a temporary break from the boards and that you will be back with us very soon.
Kindest wishes
Helen

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

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

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Dear Claudia,

Sorry I have computer problems (or slow hands from neuropathy). I missed your decision to withdraw from the board. If you need to get away for a while that is fine with us. I have had to do the same thing at various times. I think you are struggling with survivorship. I see myself in you when I recovered from breast cancer. The first few years are so hard and then you learn to step into life again. I think it's time for you to step into life. Full Force. I knew a gal with breast cancer and she told me, "whenever I get depressed I go out try something I never did before." I took sailing lessons, writing classes, advanced step, and painting classes and worked. Some people thought I was a wild woman. I think when I got the second cancer I was so devastated because I had already fought the good fight and now I had a worse cancer. Oh, I know, It's one in five hundred with tamoxifen.

I am digressing. You have worked hard and it's OK to be in life again. We are here if you want to stop in, show us some new art work, and pop out. We are all in this together.

Love ya,
Diane

Gracegoi's picture
Gracegoi
Posts: 59
Joined: Aug 2011

Claudia ,

Please read this.

http://en.wikipedia.org/wiki/John_Bradford

I thought of you when I read about Johns perserverance against all odds.

a few years ago looked this up and came to my own understanding that

GRACE meant timming.

and cancer is just timing gone awry on a cellular level.

I just wrote a sermon and when I hit the preview button Grace saw it was lost.

so in short.

HOPE is what is being sought.

I'm a stage one upsc no chemo or radiation just herbs
two years and counting.

Claudia . your why I was shopping for a dry brush for lymph drainage.

Sorry you can't read about my musing of how the war vets who suffer from PSTD are now getting .

drum rolll..

LIFETIME dissability.

I was raised in a family war zone and I didn't sign up for it nor did I get paid .

No benifits either.

I think cancer survivors who have reocurring nightmares could use lifetime disability benifits.

:-DDDDDDDDDDDDDDD

as for stress. I have had to remove myself from the internet. I belive it was the main contributor to my getting cancer because of how it effected me emotionally. I am still trying to debrief from the damage done from my years of reading .

Lets see if this makes it.

Grace

Gracegoi's picture
Gracegoi
Posts: 59
Joined: Aug 2011

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

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I never meant for anyone to feel I was diminishing them, and I'm sorry if anyone took it that way. Let's put this discussion in perspective. This thread started in 2010, and was brought to the forefront again in August 2011 when newly diagnosed Ingridjee posted looking for our help, saying "The chemo scares me more than the surgery". She has Grade 4 undifferentiated MMMT, the rarest of the uterine cancers. My reply was for HER. Please don't anyone else think that my post was some back-handed way of diminishing their own path or decisions. My focus was responding to Ingrid and her fear of the chemo her medical team was recommending.

Truly, it is impossible to compare the options a woman has with a Stage 1 cancer or a low grade cancer to the options a woman has diagnosed with undifferentiated MMMT . Apples to oranges. No matter how much research we do, the right treatment decision will never be 100% assurred to be the right one; we all just do our best. My response was for Ingrid. And I think we've lost her in the shuffle and scared her away. I feel bad about that.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i hope you have not, for one moment, thought that we on this board have not appreciated all the research and work you have done on our behalves. i'll speak for myself when i say that i have so benefitted from so many of your recommendations, thoughts, encouragement, new ideas, links, not to mention your art.

it also never occurred to me that you might take linda's response to ingrid personally, but i understand that you have, and that it has wounded you. i haven't been keeping up on this board as much as i have in the past, so i'm wracking my brain trying to think what other discussions might have distressed you here, and caused you needless stress. clearly it's a positive move for you to back off at this point, and get on with your life in different way than sitting for hours at the computer. know that we will miss your smarts and quirkiness immensely, and hope that you will drop in from time to time to let us know what you're thinking/doing. in the meantime, stay well, and thank you for all that you have given so freely.

sisterhood always,
maggie

Cindy Bear
Posts: 561
Joined: Jul 2009

I went back and re-read Linda's post and I don't see anything offensive about it, but that's just me.... She was trying to assure and comfort another poster that aggressive, conventional treatment is doable and that there were many other cyber sisters here to support and answer her questions. As she said, it was in no way meant to denigrate or dissuade anyone from going a different route.. I don't know Linda personally, but I can tell from her posts she's caring, compassionate and has a heart the size of
Hurricane Irene.

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