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CT After Chemo

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I am about to finish chemo in about two weeks. I only had a hysterectomy and 6 cycles of carbon/taxol. The cancer was confined to the uterus, but very closed to the cervix wall. So they removed everything, including the cervix and did a vaginal cuff after surgery. I had an appointment with my onco last week. He told me I will not need a CT but in one year, because my cancer was low graded: IIB, II and was all removed with the surgery. Chemo was given to prevent recurrence. I have been reading the postings about recurrence, and I am scared.

I am having only an chest X-Ray, since back in March I had one and it showed a nodule, 4mm, in my left lung. I have also read that most lung nodules are not cancer.

What do you all think?

PS: My cancer was G3

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Fayard.

I got CT or PET scans when I was done. I'd recommend checking the National Comprehensive Cancer Network guidelines (just google and you'll get link). Look at uterine neoplasms and find your type and stage and see what is recommended for treatment and surveillence. This would give you an idea of what the standard is. And then go from there.

Definitely monitor your own self and bring any changes to your doctors attention. My doc told me that I would be the best indicator of recurrence.

Wishing you the best. Mary Ann

JoAnnDK
Posts: 276
Joined: Jun 2011

And isn't it frightening, Mary Ann, to think that one is responsible for detecting her own recurrence? I have read and bee told the same thing. Such a worry.

Here is a recent paper presented at the Society of Gynecologic Oncologists' meeting. For endometrial cancer, the authors believe that neither CA 125 nor a CT scan is a reliable predictor of recurrence ("Insufficient data for routine use"). The paper was then published in the American Journal of Obstetrics and Gynecology.

As a caveat, I neither endorse nor promote these findings.
=========================================

Gyn Cancer Follow-Up Guidance
By Charles Bankhead, Staff Writer, MedPage Today
Published: June 01, 2011
Reviewed by Zalman S. Agus, MD; Emeritus Professor
University of Pennsylvania School of Medicine and
Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner

Good routine care and patient education provide the most useful information for detecting recurrence of gynecologic cancers, according to new recommendations for post-treatment surveillance.

But there is little evidence to support routine use of laboratory tests and imaging studies to detect recurrences at a stage that will influence outcomes, authors of the Society of Gynecologic Oncology (SGO) clinical document concluded.

Coordination of care among clinicians involved in post-treatment surveillance plays a key role in maintaining the continuum of follow-up for survivors of gynecologic cancers, as described in an article published online in the American Journal of Obstetrics & Gynecology.

"The goal of follow-up evaluation for detection of recurrent disease requires both clinical and cost-effectiveness," Ritu Salani, MD, of Ohio State University in Columbus, and co-authors wrote in conclusion. "Failure to adhere to recommended guidelines results in unnecessary tests, and efforts should be made to provide effective surveillance, which will result in cost-savings.

Action Points
--------------------------------------------------------------------------- -----

■Point out that this report indicates that there is very little evidence that either routine cytologic procedures or imaging are sufficiently useful to detect ovarian and endometrial cancer recurrence and alter response rates to salvage therapy.

■Note that this report suggests that the most effective method to detect recurrences is a taking a thorough history, performing a detailed physical examination, and educating patients about relevant symptoms.

"Currently, the ideal tests and schedule for gynecologic cancer surveillance have not yet been established. However, a detailed review of symptoms and physical examination at each visit results in the detection of most recurrences."

Gynecologic cancers account for 10% of all new cancers in women but 20% of all female cancer survivors, currently estimated at 10 million.

With anticipated advances in diagnosis and treatment, the number of gynecologic cancer survivors will continue to increase, raising the prominence of post-treatment surveillance, the researchers noted.

A lack of data from prospective studies to support current surveillance strategies provided the impetus for the SGO Clinical Practice Committee to review the available evidence and formulate recommendations that offer gynecologic cancer survivors the best chance for long-term survival with minimal risk and acceptable cost.

The recommendations address six gynecologic cancers: endometrial, ovarian, non-epithelial ovarian, cervical, vulvar, and vaginal. The recommendations evolved from a review of the most recent data available for post-treatment surveillance of each of the cancers.

The committee made five recommendations regarding surveillance of endometrial cancer:

•Physical exam and review of symptoms: Every three months to yearly, depending on cancer stage, grade, and histology, as well as interval since the end of treatment
•Pap test/cytology: Not indicated
•CA-125 testing: Insufficient data for routine use
•Radiographic imaging: Insufficient data for routine use
•Suspected recurrence: CT and/or PET scan, consider CA-125 test

For ovarian cancer, the committee recommended:

•Physical exam and review of symptoms: Every three months for two years, followed by increasing intervals
•Pap test: Not indicated
•CA-125: Optional
•Radiographic imaging: Insufficient data to support routine use
•Suspected recurrence: CT and/or PET, plus CA-125

The recommendations differ for non-epithelial ovarian cancer:

•Physical exam and review of symptoms: Every two to four months for two years, then every six months or annually depending on histology
•Serum tumor markers: Every two to four months for two years, then every six months for sex-cord stromal tumors but no longer indicated for germ-cell tumors
•Radiographic imaging: Generally, not indicated or data lacking to support routine use
•Suspected recurrence: CT and tumor markers

The recommendations for cervical, vulvar, and vaginal cancer are the same:

•Symptom review and physical exam: Every three months to yearly, depending on stage, type of therapy, and time from the end of treatment
•Pap test: Yearly
•Routine radiographic imaging: Insufficient supporting data
•Suspected recurrence: CT and/or PET

Noting a trend toward transitioning more patients from oncologists to primary care physicians, the committee pointed to evidence that many primary care physicians do not feel comfortable with post-treatment surveillance, particularly during the first two years after treatment.

Moreover, a survey of primary care providers showed that respondents believed transition of oncology patients could be improved with individualized patient summaries, guidelines for surveillance, and expedited referral for suspected recurrence, the committee members noted.

"Thus, the provision of up-to-date information and the education of both patients and physicians are mandatory," they wrote.

The authors had no relevant disclosures.
===================================================
Primary source: American Journal of Obstetrics and Gynecology
Source reference:
Salani R, et al "Posttreatment surveillance and diagnosis of recurrence in women with gynecologic malignancies: Society of Gynecologic Oncologists recommendations" Am J Obstet Gynecol 2011; DOI:10.1016/j.ajog.2011.03.008.

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

Put all of the burden for detecting recurrence either on us or on our primary care physicians, who admit to not feeling comfortable performing post-treatment surveillance. In addition, take away insurance coverage for laboratory tests and imaging studies used to detect recurrences because there's very little evidence to indicate that they are sufficiently effective in detecting recurrence. (Pay special attention to the word "sufficiently," which is a completely arbitrary determination) This despite not currently having an alternative.

Can you count the number of times that "cost-savings" or another cost-related variation was used?

So in the future, I need to worry that my surveillance will be completely up to me, in partnership with my primary care physician and with insurance denying such tests as CA-125 and PET scans.

Am I missing something, or am I just now realizing the way the world works?

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

a drug that costs $93,000 and only extends life for men with prostate cancer for an additional four months has been approved for Medicare and possibly insurance coverage

Also, my above post relates to treatment for gynecological cancers only (women's cancers).

california_artist
Posts: 850
Joined: Jan 2009

and what it illuminates is not a pretty picture for any of us.

These things they are passing, the new guidelines are more than guidelines, they become standard practices against which all treatment costs and approvals of insurance companies are based.

It is really bad. But, what with insurance companies no longer being able to just cancel policies of the sickest and neediest among us, they are changing the rules in order to protect their profits. Think of the millions or even billions they will save if they don't have to treat anyone until something visibly breaks or grows horns.

There is hope in the thought that your doctors, because they won't be able to treat you and therefor will not be getting paid, may just object to the rafters about this situation.

I believe that almost none of the women here actually felt sick or in pain and in need of treatment, but were discovered to need treatment only after a scan. Am I remembering that right????

And, ah, Jill, the world may just have gotten suckier for you, but remember, there are people here who care for you. Now that sounded really schmaltzy. you know what I mean.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

I didn't read the posts yesterday and I must say it was filled with interesting info... this article on GYN follow-up along with the study re: Avastin and Taxol (will be interesting to see what develops), the possibilities for the new drug Provenge tailor made to the individual's immune system, and the studies on turmeric.

Such vibrant, intelligent ladies on this site! I learn something new (and some days LOTS OF NEW THINGS) every time I sign on. Always some food for thought. Makes my head swim!

THANKS to each and everyone of you!

Karen

california_artist
Posts: 850
Joined: Jan 2009

All I can say is, get the clothes line ladies, we've all just been hung out to dry.

Wonder if this is also the case for prostate cancer.

Thanks JoAnn, that was exceedingly interesting.

It relates to the new guidelines for a drug being beneficial. I believe they changed the standard from when cancer recurs to how long one lives regardless of time of recurrence.they have changed to focusing on the end result and the interim. This was in the news recently in regards to breast cancer and Avastin. Anyone have the news clipping???

Don't anyone panic.We will just have to work harder to find ways to stay alive. Remember the first things that doctors were supposed to do--It was-- first, do no harm. Maybe together we can find a way to have that be the norm, first do no harm.

What's really good about this kind of dialog is we are aware of where we stand in the medical community and can choose to voice our feelings of the new practices, or not.

Actually, though, why treat it til it hurts has sorta been my philosophy. I had read reports that said that regardless of if one is treated or not after recurrence, the end date, if I may put it so bluntly is relatively the same give or take a few months.I don't think I agree with that. not sure at this point. I have seen some very promising remissions among the currently 4B women.

Although i did just read earlier today that a drug that costs $93,000 and only extends life for men with prostate cancer for an additional four months has been approved for Medicare and possibly insurance coverage. The reasoning was that the cost of the treatment was disallowed in determining if a drug could be prescribed, only the effectiveness could be used as a determining factor. I would post it here but I can't get scanned things to paste.

Talk about things to think about. Yikes.

This makes me want to read more, read faster and start questioning the powers that be. We have really got to advocate for ourselves or the farm will soon be given away.

For those of you who are interested, can you suggest a way to get current information out to a more extended audience?? I am open to any suggestion, well, most any at least.

california_artist
Posts: 850
Joined: Jan 2009

This is interesting to us specifically because it is not chemo but a new easier to take option, I think.

This is key:

Each regimen of Provenge must be tailored to the immune system of the individual patient using a time-consuming formulation process===

The really!! important point is that they DO NOT HAVE TO HAVE GONE THROUGH CHEMO BEFORE THEY ARE ALLOWED TO USE THIS TREATMENT. So why is that important. Because chemo does things to the body that can leave it less able to recover and use new treatments. It used to be that nothing could be used til chemo had proven ineffective two or three times. This stuff is soooooooooo interesting. and all of us are on the cutting edge. What if you could just skip chemo and get this fabulous made especially for you treatment????OMG!! how thrilling. See, there is hope.

This new standard of "reasonable and necessary" while only having a benefit of an additional four months could apply to those of you who have numerous mets. And you all know with all the other things you are doing to prolong your lives, you'll live way longer than that. WAY, WAY LONGER

Medicare confirms payment for prostate cancer drug
By MATTHEW PERRONE AP Health Writer
Posted: 07/06/2011 03:27:40 PM PDT
Updated: 07/06/2011 03:44:48 PM PDT

WASHINGTON—Medicare officials confirmed Thursday that the program will cover the $93,000 price tag for prostate cancer drug Provenge, an innovative therapy that typically gives men suffering from an incurable stage of the disease an extra four months to live.
The decision from the Centers for Medicare and Medicaid essentially reiterates an earlier proposed ruling that the biotech drug, made by Dendreon Corp., is a "reasonable and necessary" medicine. As expected, the government will cover the cost for men who meet the drug's approved criteria: those with prostate disease that has spread throughout the body and has not responded to hormone therapy or radiation. The government will not pay for alternate, or so called "off-label," use.

"We do not believe there is any persuasive evidence for the off-label use," of Provenge, the agency concluded in the ruling, posted online late Thursday.

About 240,000 new cases of prostate cancer are diagnosed each year in the U.S. and the disease claims over 33,000 lives annually, according to the American Cancer Society. The decision ensures that tens of thousands of men will be able to take the drug through the government-backed health care plan that covers seniors. With government reimbursement, analysts estimate Provenge could rack up $1 billion in sales next year. The decision is important for Dendreon because most prostate cancer patients are 65 or older.

The infused drug is a first-of-a-kind treatment in

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that each dose is customized to work with each individual patient's immune system. The drug is given in three infusions over the course of one month.
Medicare is legally prohibited from considering price when deciding whether to pay for a new treatment. But Provenge's steep price tag had generated debate about the cost of new drugs and the government's role in paying for them, especially against the political backdrop of health care reform and the rising cost of Medicare given the large number of baby boomers.

Seattle-based Dendreon says Provenge's price reflects the more than $1 billion spent researching and developing the drug. And prostate cancer patients point out that the median survival time with Provenge is double that of chemotherapy, which is about two months and is marked by painful side effects.

Each regimen of Provenge must be tailored to the immune system of the individual patient using a time-consuming formulation process. Doctors collect special blood cells from each patient that help the immune system recognize cancer as a threat. The cells are mixed with a protein found on most prostate cancer cells and another substance to rev up the immune system, and then given back to the patient as three infusions two weeks apart.

Provenge is the first federally-approved cancer drug that uses the body's own immune system to fight the disease, offering an alternative to chemotherapy drugs that attack cancerous and healthy cells at the same time.

On Wednesday, Dendreon announced it received federal regulatory approval to open a second manufacturing facility in Los Angeles, in addition to its primary facility in New Jersey. The company hopes to open a third facility in Atlanta by the end of August.

Shares of Dendreon rose 96 cents, or 2.4 percent, to $40.40 in afterhours trading. The stock had closed the regular session down $1.06, or 2.6 percent, at $39.44.
========

iT'S me again. Okay, for right now it is not approved for women but prostate cancer and uterine/ovarian cancers are reproductive cancers so what we need is a good lawyer to prove discrimination.. I'm just thinking here.There is a federal law that prohibits discrimination based on a disability and I think it is a good guess that stage 4 cancer is one of the greatest disabilities there is.

When I went to college, it was a flat out toss up between become a nutritionist and an attorney. Unfortuneatly I wasn't able to do either.

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

Has anyone have/had stage 2 grade endometrial and had a
PET after chemo?

culka's picture
culka
Posts: 158
Joined: Oct 2009

stage IIb, grade 3, no chemo, but radiation. No Pet scan. Year after radiation discharge from follow-up. So any recurrence scare I consulted with family doctor who admit the same like Jill's. He doesn't know.

It is on us ladies.

Kaleena's picture
Kaleena
Posts: 1199
Joined: Nov 2009

Hi Fayard:

I was diagnosed with Grade 2, Stage ii/iiia endometrial adencarcinoma in September of 2005. Since that time, I had a CT Scan prior to chemo. One after chemo 7 months later. Then I would get a yearly CT Scan. After three years, I was getting a CT Scan every six months because of scarring. Then in July of 2009, my new doctor thought he saw something (it was there since 2005). Ordered PET Scan (it was negative), ordered CT Scan (it was negative) then ordered MRI (it was negative) within three weeks of each other. I did have a positive biopsy which I had surgery for in February of 2010 (which was negative except for a lymph node which had microscopic cells) and since that time I have had two PET Scans (both negative). I was ordered to have a PET scan last week, but new insurance is denying it. It is in appeals.

But I am finally getting my port out on Thursday (it was in since 2005) and I was done with treatment in May of 2006. Go figure.

My best to you.

Kathy

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

It sounds like you have been clean since 2005. Did you only have chemo? Hysterectomy?
My cancer grade was G3, clear cell.

Kaleena's picture
Kaleena
Posts: 1199
Joined: Nov 2009

I had a total hysterectomy due to endometriosis (was not supposed to be cancer). After hysterectomy, the pathology came back with cancer so I had to do a staging surgery. At that surgery everything was negative so it was suggested that I have a preventable treatment of Taxol/Carbo treatment (in order to prevent any loose cells roaming around). After the six rounds of treatment (six months). I had 3 brachytherapies. My radiation/onc did not want to do pelvic radiation due to the fact that I was already so scarred from the endometriosis.

I was good until a positive biopsy in October of 2009. I had the small tumor removed in February of 2010 which was negative and at that time they removed a few lymph nodes. Only one came back with microscopic cells. No treatment was suggested (I could of had radiation, but the lymph was removed). Since then, I had two PET scans, both negative and am now due for another one but my new insurance company denied the request.

At the time of my diagnosis, the doctor indicated that what I had was treatable. I believe that it was no one ever took out my port. But now I have been refused by the local hospitals where I live to flush the port because my doctor is out of state. As a result, I have not had my port flushed since January so now it is useless. Tomorrow I get it out.

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I am glad everything worked out well for you.
My uterus was the only one infected with the cancer, which also invaded the myometrium 9mm of 14 mm. They took out 58 lymph nodes, and fortunately none was infected.
My doctor also wanted me to have treatment to prevent recurrence by killing any possible cell that might to have escaped.

california_artist
Posts: 850
Joined: Jan 2009

Fayard has said they took out 58 lympn nodes, and furtunately none was infected.

My question is still, WHY take out those lymph nodes if you intent on using the same treatment whether they contain cancer or not.

I don't get it. Anyone know the reasoning behind this.

When I go to a doctor and they want to do any test, my first question is, "and what will you do with that information? How will it effect my treatment?" They say how, and then ask-- and then what will you do. I keep on asking til we get to the end of the scenerio, and if I know I will not approve of the end action, I don't approve the test.

Some times they'll want to do tests just to see if it's what they think and then you find out there is not treatment. No treatment.. No test.

I'm pretty sure they look at the uterus while you are in surgery so they would have known how far the cancer had invaded and would have decided on treatment, simply based on that info.

Sorry Fayard to be discussing your care, but we have been talking about this situation for a bit now and still wondering.

The treatment you got is the standard for prevneting recurrnece, I just was wondering about the lymph node removal.

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

I remember reading--almost three years ago, and my memory ain't what it used to be--that lymph node removal in the diagnosis of UPSC helped determine staging, treatment, and follow-up monitoring. Prior to the use of lymphadenectomy, doctors did not really know with accuracy the correct stage of the disease. This is a big reason why statistics (lies, damn lies, etc.) prior to the 2005 adoption of the Yale treatment protocol, which included lymph node removal in determining accurate stage, were so grim; and what was called Stage 1a, for example, was NOT what we call Stage 1a now.

Thus, with the accuracy in staging that comes with lymph node removal, women with USPC are given a great deal more hope, their treatment is more targeted, and the medical community has more information about who might recur and who might not. Also, some women are spared certain treatments that may be determined unnecessary.

Nevertheless, Claudia, it seems that the entity that gains the greatest benefit from the practice of lymph node removal is the medical community, and not the women with the disease. I completely agree with you that it seems as if too many lymph nodes are being removed, thus impairing the body's ability to fight further infection. The important thing, I guess, is to keep asking our doctors HOW they are going to use the information and HOW the information will affect our treatment.

I don't have the time right now to think this all through, so there may be lots of flaws in what I am saying. Claudia, I'm looking forward to having you point them out (seriously).

Love,

Jill

california_artist
Posts: 850
Joined: Jan 2009

What I was noticing was that even if there was no sign of cancer in any nodes as in Fayards and other's cases, they were still given treatement as though it was a stage 3C.

Has anyone here, who was staged with nodes removed and had it determined that their nodes were clear, and there was no sign of cancer anywhere else in the body, been told they could go home???? Or were they offered something just incase a cell got loose somewhere????

would appreciate your input on this one.

And in Fayard's case since the cancer was a Stage ll and clear cell, she was going to be offered chemo and radiation anyway. Clear cell responds to taxol better than UPSC from what I've read. It may have positive estrogen receptors. I honestly forget why is responded better.

We really need a convention or a committee or something.

culka's picture
culka
Posts: 158
Joined: Oct 2009

12 negative nodes, clear uterus, only residue of tumor in cervix, so she sent me to radiology.
Before surgery UPSC, clear cell and endometroid
After surgery clear cell and endometroid
After radiation endometroid

Did I loose it on my way?

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I think the difference between Stage 2 and 3 treatments is radiation. Apparently, I do not need it because the lymph nodes were clean and the tumor confined to the uterus (even though it invaded the myometrium more that 50%, which is why it was stage 2.)

culka's picture
culka
Posts: 158
Joined: Oct 2009

the difference is doctor or cancer hospital. I was same stage 2 as you, babe.

Thank God I was excused from chemo and till today can't understand why I signed the radiation paper.

Kaleena's picture
Kaleena
Posts: 1199
Joined: Nov 2009

Claudia,

When I had my hysterectomy done, my gyn had a gyn/onc assist him (not that I had cancer), only because he was his friend and that he was good at repairing in case they nipped a bowel or bladder (by the way they did nic my bladder). Both doctors did not see any cancer at that time and were both surprised when the pathology came back. (I guess they always check stuff they removed).

It was then that I had the staging surgery at which time they removed lymph nodes, appendix, mementum??. All washings were clear and everything else was negative.

My husband still believes that there was never any cancer and somewhere the pathology report was in error. Although I did ask for my slides when I went to a doctor out of state, how can one be sure that the specimen was actually mine if there was a mistake right at the beginning?

And if everything was clear and negative, why did I have to get a port when I was just getting preventative treatment anyway? And why did they keep putting me off to have it removed? Then another doctor (seeing I was getting near my 5 yr mark) finally takes more than 5 minutes with me and says that he sees something on my CT scan. (which had been there since the beginning). All questions I should have asked but was too new and too scared at the time.

But when in 2009 I refused to get chemo for that spot (after I was told I would get chemo, surgery and would be wearing a permanent colostomy), he writes on the chart that I was seeking help elsewhere. By the way, I did have that spot removed. It was negative. I did not have chemo and I do not have a colostomy.

I ask so many questions now and you basically have to look after yourself. I do schedule or request scans and prior would ask for blood tests prior to my doctor visit so that the reports would be there when I saw him for a check-up. Instead of going for a check-up then getting tests done and then waiting for results. This way, if you have questions, you can ask the doctor then and there.

With regard to lymph node removal, during my last surgery in 2010, they did remove a lymph nodes in the area in and around the tumor since I did have a positive biopsy prior to surgery. Only one lymph node had microscopic cells but since it was removed no real treatment was required. I just had two PET scans since then and am supposed to get one now but ( new insurance denied it).

california_artist
Posts: 850
Joined: Jan 2009

Hey, I hope you didn't feel like I was suggesting you should have done more, I wasn't at all. I was just wondering why the practice continued. And I so agree about looking at things prior to the doctor's appointment so that you can know the questions you want answers to.

When I went to the local oncologist to review my reports after refusing treatment from the original oncologist who refused to order a PET/CT scan, he came into the room and had me wait while he read the report for the first time. He said everything looked alright. I asked about the lymph nodes that were enlarged. He said there was only one and we could get a CT in a month and then continue with CT's everytwo months. Well, first of all I had read the report and there were two lymph nodes that were growing, not one, so I corrected him again. He still said there was only one. Ya know, at that point, what can one say. If the doctor not only doesn't even bother to look at the report before coming in the room and then can't even read the report, what's really the point? He didn't want to do an exam. Nothing. He just wanted me to come in every two months and get exposed to a heap of radiation. He got paid for every CT he ordered come to find out. Haven't ever been back to him. Have had my reg gyno order labs and PET/Ct's yearly.

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I greatly appreciate everyone's input.
They removed 58 lymph nodes because the tumor developed in an unusual place: narrow part of the uterus. It was very closed to the walls and invaded the myometrium touching the cervix.

The doctor removed all lymph nodes near the area affected and potentially affected by the tumor. The areas where he removed the most were left and right of the pelvis, 13 and 14.

When my doctor first found the tumor, which I had to suggest an ultrasound of the pelvis, she did a biopsy and determined cancer with well differentiated cells. That was partially false, since the final biopsy, after surgery, reflected clear cell poorly differentiated. The tumor was growing fast.
I do not remember asking any questions, since I was shocked with the diagnosis.

Northwoodsgirl
Posts: 201
Joined: Oct 2009

I had only CTs. Never have had a PET. I had endometrial adenocarcinoma stage 2B

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

When did you finish your treatment? What grade was it?

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

This is SO exciting; and thanks, Claudia, for pointing out that if the tailored treatment is used in combination with other things we are doing to prolong our lives, we might get WAY more than four extra months. Having this alternative to chemotherapy, with its associated side-effects, gives me such hope, despite its current limited use.

The catch is that we seem to have to fight for this alternative. Is this sexism at work? Other than breast cancer, women's cancers get short shrift. "The government will not pay for alternate, or so-called "off-label" use"; nor does the drug manufacturer believe that there is any persuasive evidence for alternate use. Wha??

If the drug company is resistant to studying alternate use (and why this is I fail to understand), what motivation does the government have to fund such research.

I am working on figuring out how to speak up (other than on this board, where many of you probably wish I would shut up). Suggestions welcome.

california_artist
Posts: 850
Joined: Jan 2009

Grade 3 generally is a designation of pap serous or clear cell, I think. Either of these are more agressive cancers and in the past have warranted a PET/CT or at the very least a CT to check on progression or recession of you cancer. I do apologize again for not responding sooner.

The NCCN guidelines are on line and will help you out. Registration is quick and the information is vast. There are little charts re treatment standards.

Hang in there

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

Thank you for the info. Here is what I found under the NCCN website among other things:

Chest X-Ray annually
CT/MRI as clinically indicated (I do not know what this means.)

JoAnnDK
Posts: 276
Joined: Jun 2011

........that not only do men have this new prostate cancer drug, but they also have Viagra. Yet there is no "cure" for morning sickness (or neuropathy for that matter). GRRRR I realize that neither of these conditions are fatal, but neither is erectile dysfunction!

nancygt
Posts: 86
Joined: Jan 2010

It is not just treatment but you can go all the way back to testing, The PSA test has a much higher false positive rate than CA 125 and there have even been panels calling for deletion of PSA testing from coverage as majority of men with prostate cancer will not die of the cancer as it is slow growing. But don't hold your breath.
And now that CA 125 can be combined with HER 4 testing, it is a much more reliable test. But I have a business associate with BCBS that tells me not to hold my breath on any recommendations re: CA 125 testing and that it not the cost of the test itself but the follow procedures-ultrasound, biopsy,etc- that are costly. Sounds a lot like the govt panel that wanted to change mammogram coverage to annual only at age 50, rather than age 40. It was easy to put a cost on the redcued number of mammograms that would be done and the 600,000 women a year that would be diagnosed much later were deemed to be expendable.It was really nice to hear that panle was made up of "public health" doctors and did not contain a single oncologist. Fortunately public uproar and the power of the bereat cancer lobby squashed that debacle.
Sorry if I sound cynical but I have had a personal experience that was quite upsetting. When my second recurrence of USPC within 15 months of orginal diagnosis (and 4 months of end of treatment for first recurrence)called for aggressive chemo, I had my local doctor,and my docs at M.D.Anderson and Moffett Fla. agree that most efficacy would be to be treated with Cisplatin and Adriamycin. I had to wait 2 months to be treated due to severe chemotherapy drug shortages. I contacted my insurer, United Healthcare, largest insurance company in U.S. and neither they nor my doctors could not help obtain the drugs sooner. So my tumors near my lung increased from 8 to 20 and their growth rate doubled (SUV 8 to 16 on PET scan)while I waited on the drugs. I agree that we have not harnessed power to effect change-but when I posted about proposed legislation before congress to consider greater power for FDA when critical chemotherapy drugs were in dire shortage, I did not get a single response to the posting.Where is our energy to effect change ? Maybe some of our energy spent arguing about alternative treatments and all but attacking each other needs to be directed to getting PET scans approved for high grade uterine cancers for medicare (and insurers who follow medicare guidelines), whether CA 125 testing now more accurate when combined with HER 4 be recommended by gynecologists to patients over a certain age, whether the FDA can do anything to alleviate critical shortages of proven chemo drugs that have been around for 50 years or more rather than paying $100,000 for drugs of questionable value ?
Yes I am cynical and I probably won't live to see any of these changes made but maybe these changes could help the next generation of those diagnosed or the ones that could be diagnosed earlier.

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