Is it "GIVING UP"?

pandagypsy

Abbycat2 said:

Great advice , pandagypsy!

Good advice, Pandagypsy! I think Moffitt Cancer Center is a not for profit cancer treament center located in Tampa. I was impressed with my experience there. I am sorry to learn how cancer treatment has been so costly for you , both financially and in terms of your quality of life. I absolutely understand why you have arrived at a place where "enough is enough " has become a mantra that resonates inside both your heart and your head. I know that I may die from this aggressive, advanced stage uterine papillary serous cancer that is so similar to the typical form of OV.  I have come to the conclusion that my QUALITY of life is far more important to me than how many more years I can survive with diminished pleasure in daily life.  Yesterday evening, I drove 30 plus miles north to listen to my gyn onc give a talk about the state of affairs of treatment for gynecologic cancers . I walked away from that with greater resolve not to put myself through needless, useless torture euphemistically called "treatment " just so that I can survive another year. I want to live and not just "survive" and I think you may agree pandagypsy.  Should my cancer recur, I will research the treatment options available plus the side effects before I go blindly into believing that the treatment will work. Have you noticed that the standard of care, i.e., evidence based treatment, for initial diagnosis is always carboplatin/taxol chemotherapy? And have you noticed that for some women it simply doesn't stop the gradual progression of their disease because it is ineffectual? I figure it is a lousy crap shoot just how well treatment works for any given woman and- if you are a person who does not see life through rose-colored glasses- you are aware that treatment may increase your "disease free survival" and your "overall survival time", but it can 't prevent the inevitable health decline . I apologize for my brutally honest point of view, but I have personally never lived in a make-believe world. I plan to live my life as fully and as richly as I can RIGHT NOW because that is all that matters and because I can't count on being here in the next few years.

 

Abbycat2, you read my mind!

I consider myself to be Reality Based.......it is what it is..........while I now consider myself "in between treatments" (after all, stage IV is not "curable", but "treatable" according to my onc.), I have time to consider what I want to do in the future.  Moffit definitely would not be out of the question, at least to get another opinion and what studies they may be doing.  I am happy to have an onc. who asked me from day one, what kind of patient I wanted to be: One who wants things "candy coated" or one who wants to know what is really going on.  I've made it quite clear that I want to know the truth and details on lab results, etc.  After a very disappointing "non-gypsy" lifestyle last year due to weekly chemo, I will take the time this year to visit my kids and other friends and family, and see some sites before I re-scan this fall. I am feeling better each day, so I will take advantage of that NOW!  Stay tuned.....................

Defying Disaster

pandagypsy said:

Abbycat2, you read my mind!

I consider myself to be Reality Based.......it is what it is..........while I now consider myself "in between treatments" (after all, stage IV is not "curable", but "treatable" according to my onc.), I have time to consider what I want to do in the future.  Moffit definitely would not be out of the question, at least to get another opinion and what studies they may be doing.  I am happy to have an onc. who asked me from day one, what kind of patient I wanted to be: One who wants things "candy coated" or one who wants to know what is really going on.  I've made it quite clear that I want to know the truth and details on lab results, etc.  After a very disappointing "non-gypsy" lifestyle last year due to weekly chemo, I will take the time this year to visit my kids and other friends and family, and see some sites before I re-scan this fall. I am feeling better each day, so I will take advantage of that NOW!  Stay tuned.....................

Happy you are considering Moffit

As an RN who has worked with physicians as a patient, patient advocate and professionally for over 40 years, my best advice is to make your doctor's job as easy as possible. Physicians are rushed. A new doctor will not have time to catch all of the important facts of your case, or details of our response to treatment. Yet those details are critical to determine the best next steps for you personally.

This takes some time but, if at all possible, prepare a written summary, in chronological order, from your medical records. Include a complete diagnosis, the pathologist's findings, findings from your operative report, the most recent CT or MRI findings, each type of chemo and a short description of the side effects you experienced from each type of treatment, and CA-125 results.

I did this for my sister who has been seeking opinions from several different gyn/onc physicians as to the best next steps for her. Although several physicians had obviously spent time with her records before her visit, they did not remember her case acurrately with respect to important particulars such as her response to therapy (CA-125 and symptom abatement) and the host of adverse effects she experienced. Because we had the concise medical record summary at hand, she got the very best advice she could get.

My sister is not a candidate for a second debulking surgery, although debulking surgery and IP chemo is a great treatment option for recurrent disease (she does not qualify due to plaque-like tumor growth on (but so far not in) her small and large bowel and liver that cannot be surgically removed) Her grade 1-2 papillary serous Stage IV OC cancer is slow growing. And although it is supposed to be difficult to treat, she responded extremely well to carbo/taxol, both IV and IP the first time around, and the OCEANS protocol (carbo/gemcitabine/avastin) the second time around, although the latter had to be stopped early due to ugly side effects. The third time, they tried Cytoxan orally which did nothing but cause severe stomach pain. The fourth time, carbo and taxol again, but this time weekly. Little response and her CA-125 really started climbing. She has been off therapy for about 3 weeks now with virtually no downside so far, while we research the next best step, looking nationwide and conducting intense research for answers.

An interesting sidenote. All pathologists were not created equal. To get the best treatment, you must have the best pathologist around slice and dice the tumor and identify the cell types accurately. One pathology text I perused said that pathologists often disagree, especially when identifying more unusual cancer types. You cannot get the best treatment if the cancer type, grade, or other constituents of the pathology report are not accurate. We are seeking a second pathologist's opnion because she has had such an unusual response to treatment for the type of cancer the pathologist diagnosed.

She is BRCA 1 and 2 negative. Genetic testing of the tumor (GeneTrails) shows no abnormality except 1 virtually unknown defect.

After weeding out for-profit cancer centers, the best treatment centers seem to be divided into two or three camps. (1) Drugs and drug trial focused - many now focused on individualized therapy based on genetic testing, estrogren/progesterone receptor testing; and tumor testing for theorectical response to different drugs (Caris Molecular Intelligence Report); (2) Debulking surgery with HIPEC or regular IP chemo during and after surgery (this gives the longest overall survival by far); and centers that are big enough to offer several different options such as MD Anderson, which has been conducting research for over a decade in low grade serous ovarian cancer. That's our next stop.

A small word of caution about clinical trials. Clinical trials are big business. If you go into a clinical trial, do your own homework. Be cautious about clinical trials offered by for-profit centers.

My sister has been offered the very best supportive therapy while on chemo. He side effects have been greatly minimized. This is the kind of treatment that you may not get at a for-profit center.

Hope this information helps someone.

Best wishes to you all.

pandagypsy

Defying Disaster said:

Happy you are considering Moffit

As an RN who has worked with physicians as a patient, patient advocate and professionally for over 40 years, my best advice is to make your doctor's job as easy as possible. Physicians are rushed. A new doctor will not have time to catch all of the important facts of your case, or details of our response to treatment. Yet those details are critical to determine the best next steps for you personally.

This takes some time but, if at all possible, prepare a written summary, in chronological order, from your medical records. Include a complete diagnosis, the pathologist's findings, findings from your operative report, the most recent CT or MRI findings, each type of chemo and a short description of the side effects you experienced from each type of treatment, and CA-125 results.

I did this for my sister who has been seeking opinions from several different gyn/onc physicians as to the best next steps for her. Although several physicians had obviously spent time with her records before her visit, they did not remember her case acurrately with respect to important particulars such as her response to therapy (CA-125 and symptom abatement) and the host of adverse effects she experienced. Because we had the concise medical record summary at hand, she got the very best advice she could get.

My sister is not a candidate for a second debulking surgery, although debulking surgery and IP chemo is a great treatment option for recurrent disease (she does not qualify due to plaque-like tumor growth on (but so far not in) her small and large bowel and liver that cannot be surgically removed) Her grade 1-2 papillary serous Stage IV OC cancer is slow growing. And although it is supposed to be difficult to treat, she responded extremely well to carbo/taxol, both IV and IP the first time around, and the OCEANS protocol (carbo/gemcitabine/avastin) the second time around, although the latter had to be stopped early due to ugly side effects. The third time, they tried Cytoxan orally which did nothing but cause severe stomach pain. The fourth time, carbo and taxol again, but this time weekly. Little response and her CA-125 really started climbing. She has been off therapy for about 3 weeks now with virtually no downside so far, while we research the next best step, looking nationwide and conducting intense research for answers.

An interesting sidenote. All pathologists were not created equal. To get the best treatment, you must have the best pathologist around slice and dice the tumor and identify the cell types accurately. One pathology text I perused said that pathologists often disagree, especially when identifying more unusual cancer types. You cannot get the best treatment if the cancer type, grade, or other constituents of the pathology report are not accurate. We are seeking a second pathologist's opnion because she has had such an unusual response to treatment for the type of cancer the pathologist diagnosed.

She is BRCA 1 and 2 negative. Genetic testing of the tumor (GeneTrails) shows no abnormality except 1 virtually unknown defect.

After weeding out for-profit cancer centers, the best treatment centers seem to be divided into two or three camps. (1) Drugs and drug trial focused - many now focused on individualized therapy based on genetic testing, estrogren/progesterone receptor testing; and tumor testing for theorectical response to different drugs (Caris Molecular Intelligence Report); (2) Debulking surgery with HIPEC or regular IP chemo during and after surgery (this gives the longest overall survival by far); and centers that are big enough to offer several different options such as MD Anderson, which has been conducting research for over a decade in low grade serous ovarian cancer. That's our next stop.

A small word of caution about clinical trials. Clinical trials are big business. If you go into a clinical trial, do your own homework. Be cautious about clinical trials offered by for-profit centers.

My sister has been offered the very best supportive therapy while on chemo. He side effects have been greatly minimized. This is the kind of treatment that you may not get at a for-profit center.

Hope this information helps someone.

Best wishes to you all.

Great info!

A small word of caution about clinical trials. Clinical trials are big business. If you go into a clinical trial, do your own homework. Be cautious about clinical trials offered by for-profit centers

I read this quote with interest; when I suggested "clinical trials" I might qualify for would be more affordable treatment, I was surprised when my Dr. said "the trials aren't free".......ha ha to me! I go to FLORIDA CANCER SPECIALISTS & RESEARCH; thinking that I am offering my experiences as a sort of guinea pig, I didn't think they would gouge me for treatment I do have the same doctor from when I started this journey in 2009, and, while he is very smart and attentive, I realize he he an "owner" of the business, along with the other doctors.  I think that I would like to visit Moffit if I get a bad scan, and decide from there what I might do.  Thanks for the input , Defying Disaster.