CT done today
Comments
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I'm so sorry to hear this news
Pinky, I'm really so sorry to hear the results of your CT. I hope your doctors come up with a plan of action that kicks this cancer to the curb. FYI, I'm providing some information below on two clinical trials for ONC201 for advanced and recurrent endometrial cancer. My childhood friend is participating in one of these trials at Fox Chase in Philly, but it is being offered at other locations. My friend has stage 4, grade 3, adenocarcinoma and failed standard chemotherapy. As you will see, the trials are open to all subtypes of endometrial cancer, including UPSC. My friend's cancer has been stable for about six months now. She's going for another scan this Thursday. I'm also providing links to two recent articles about dramatic success stories on ONC201 and a subtype of brain cancer. The phase 1 results showed promising results in endometrial cancer, especially in aggressive EC. My friend takes 5 ONC201 pills once a week. ONC201 acts by blocking the molecular pathways that drive cancer cell growth.
Here are links to the clinical trials and news stories: https://clinicaltrials.gov/ct2/show/NCT03099499
https://clinicaltrials.gov/ct2/show/NCT03485729
https://www.philly.com/health/brain-cancer-oncoceutics-philadelphia-dopamine-fda-20181205.html
https://people.com/health/teacher-brain-tumor-week-to-live-now-thriving/
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So sorry to hear this, pinky104pinky104 said:It's baaack!
I called and got my CT scan results today from my PCP's office. I have a 5 x 10 cm. mass in the muscle by my right hip. It's the same spot where my GYN/onc. said he couldn't get all the cancer in my 2017 surgery. He hoped that chemo would take care of it. Since all my scans came up negative, it appeared chemo had taken care of it, but it was apparently lurking in there somewhere.
My PA at my PCP's office called both my oncologist and my GYN/onc (they're at different hospitals) and told them to call me. I got scheduled for Wed. afternoon in my GYN/onc.'s office and Thurs. morning at my oncologist's office. I got sent to get a CA-125 by my GYN/onc today. After I got home from that, my oncologist's office called and wanted a CBC and CMP also. They agreed to let me get them at the hospital when I get there on Thurs. We have a major snowstorm coming, with ice afterwards, and getting around isn't going to be easy for the next couple of days.
At least this mass explains the numbness and pains down the inside of my legs that I've been getting. The neurologist that diagnosed me with meralgia paresthetica saying i was wearing clothes that were too tight was definitely wrong. My PA agreed that this mass could be pressing on the nerve that runs over my hip.
For now, the diarrhea has stopped. I have to be suspicious that the mass is in other places besides the muscle since it caused a GI bleed. I wonder what will be done for me this time. If my GYN/onc. couldn't get all the cancer in the muscle last time, he certainly won't be able to get it this time. I wonder if I'll get radiation, which I've never had before, or chemo again. Maybe both. I'll probably have at least an exploratory surgery. Bah humbug!
My CA-125 was just 17.4 in the middle of January. I can't imagine how high it must be with a mass of 5 x 10 cm. in me now. Just like last time, it must have skyrocketed.
Well, I thought I'd let you all know what's going on. Next month will be 9 years since my original UPSC diagnosis. It just goes to show how sneaky this cancer can be. Keep a watchful eye on yourselves, and report any symptoms. I hate to think about how many doctors have missed this recurrence, blaming my symptoms on other things. I've seen the two oncologists, an orthopedic surgeon, a neurologist, a urologist, my PCP, his PA, and an ER doctor. I've been checked every 3 mos. by one oncologist or the other. It's pretty sad. I suspected the cancer was back in the spring of last year, and that's why I had the CT scan in July. My leg was getting more numb then. The numbness never went away after the second surgery. I thought a nerve might have been cut in my second surgery. How wrong I was!
I'm not looking forward to surgery again. I'll probably get in pretty quickly as I did the last time. I was in for 6 days both times I had surgery, way too long. The hospital is very noisy, and it's impossible to get any sleep there. When you finally get to sleep, you're awoken at about 2:30 am by the nurses coming in to do vitals.
I have to go serve dinner. My husband isn't taking this well, although I've been preparing him for it. He broke down crying this afternoon, and he never cries. I pretty much expected this diagnosis, so it's no surprise to me. I had hoped for another reason for the bleeding. I'm actually feeling slightly better since my CT scan. Maybe that awful tasting contrast stuff helped my gut.
Thanks, everyone for all your replies and good wishes.
While we have different tumor types (I am grade II endometrioid adenocarcinoma), perhaps it helps to chime in that I have lived with the disease for going on 14 years. I may be looking at my 3d recurrence (LL lobe lung nodule) but I don't expect to die this year, although I am bracing for more treatment. I comfort myself with the thought that there are treatment alternatives for us still.
It strikes me that your case is further proof that CT scans can be so capricious. How can it miss such a sizable tumor that seems to me must have been there in July? Are we truly at the mercy of a random "slice" the testing protocol selects? How frustrating.
If you care to comment, I wonder what your take is about bi-lateral "hip" pain? In the last week I've seen a P/T who is going to start myofascial release therapy on me next week, and my DO whom I see for pain issues relating to neuropathy, both of whom tell me what I complain of as "hip" pain is not really my hip; it's the muscles that attach in and around there. I comfort myself that I can't be facing a finding like yours because it is bi-lateral. The CT I had in December that found the LL lobe nodule was otherwise clear. But reading your story kind of frightens me that things could be missed only because the CT is not perfect science.
But enough about me; I'll just keep moving forward. I feel very bad about your latest recurrence. I can imagine how dispritiing it is for you and your husband but your past treatments have helped and allowed you to remain stable for periods of time. I have confidence that the next recommended treatment will likewise prove efficacious. Those of us in the recurrence club have no choice but to accept that this is true; and, I do believe it. Best wishes to you as you sort this out. Oldbeauty
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Cyber hugs pinkypinky104 said:It's baaack!
I called and got my CT scan results today from my PCP's office. I have a 5 x 10 cm. mass in the muscle by my right hip. It's the same spot where my GYN/onc. said he couldn't get all the cancer in my 2017 surgery. He hoped that chemo would take care of it. Since all my scans came up negative, it appeared chemo had taken care of it, but it was apparently lurking in there somewhere.
My PA at my PCP's office called both my oncologist and my GYN/onc (they're at different hospitals) and told them to call me. I got scheduled for Wed. afternoon in my GYN/onc.'s office and Thurs. morning at my oncologist's office. I got sent to get a CA-125 by my GYN/onc today. After I got home from that, my oncologist's office called and wanted a CBC and CMP also. They agreed to let me get them at the hospital when I get there on Thurs. We have a major snowstorm coming, with ice afterwards, and getting around isn't going to be easy for the next couple of days.
At least this mass explains the numbness and pains down the inside of my legs that I've been getting. The neurologist that diagnosed me with meralgia paresthetica saying i was wearing clothes that were too tight was definitely wrong. My PA agreed that this mass could be pressing on the nerve that runs over my hip.
For now, the diarrhea has stopped. I have to be suspicious that the mass is in other places besides the muscle since it caused a GI bleed. I wonder what will be done for me this time. If my GYN/onc. couldn't get all the cancer in the muscle last time, he certainly won't be able to get it this time. I wonder if I'll get radiation, which I've never had before, or chemo again. Maybe both. I'll probably have at least an exploratory surgery. Bah humbug!
My CA-125 was just 17.4 in the middle of January. I can't imagine how high it must be with a mass of 5 x 10 cm. in me now. Just like last time, it must have skyrocketed.
Well, I thought I'd let you all know what's going on. Next month will be 9 years since my original UPSC diagnosis. It just goes to show how sneaky this cancer can be. Keep a watchful eye on yourselves, and report any symptoms. I hate to think about how many doctors have missed this recurrence, blaming my symptoms on other things. I've seen the two oncologists, an orthopedic surgeon, a neurologist, a urologist, my PCP, his PA, and an ER doctor. I've been checked every 3 mos. by one oncologist or the other. It's pretty sad. I suspected the cancer was back in the spring of last year, and that's why I had the CT scan in July. My leg was getting more numb then. The numbness never went away after the second surgery. I thought a nerve might have been cut in my second surgery. How wrong I was!
I'm not looking forward to surgery again. I'll probably get in pretty quickly as I did the last time. I was in for 6 days both times I had surgery, way too long. The hospital is very noisy, and it's impossible to get any sleep there. When you finally get to sleep, you're awoken at about 2:30 am by the nurses coming in to do vitals.
I have to go serve dinner. My husband isn't taking this well, although I've been preparing him for it. He broke down crying this afternoon, and he never cries. I pretty much expected this diagnosis, so it's no surprise to me. I had hoped for another reason for the bleeding. I'm actually feeling slightly better since my CT scan. Maybe that awful tasting contrast stuff helped my gut.
Thanks, everyone for all your replies and good wishes.
Well definitely not the news you wanted to hear. Can they do a PET to see if there are other hot spots anywhere? Yes I agree with you when you say 'keep a watchful eye on yourselves and report symptoms'! We truly do have to be advocates for ourselves and not be afraid to speak up if we feel the docs are not listening or dismiss something that is a big concern to us. You and your husband are in my prayers. Take care of yourselves and let the tears bubble up so you can deal with the grief and then plan to move forward and get through this next part of your cancer journey. Again sending you lots of love and hugs. xoxo
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ONC201MoeKay said:I'm so sorry to hear this news
Pinky, I'm really so sorry to hear the results of your CT. I hope your doctors come up with a plan of action that kicks this cancer to the curb. FYI, I'm providing some information below on two clinical trials for ONC201 for advanced and recurrent endometrial cancer. My childhood friend is participating in one of these trials at Fox Chase in Philly, but it is being offered at other locations. My friend has stage 4, grade 3, adenocarcinoma and failed standard chemotherapy. As you will see, the trials are open to all subtypes of endometrial cancer, including UPSC. My friend's cancer has been stable for about six months now. She's going for another scan this Thursday. I'm also providing links to two recent articles about dramatic success stories on ONC201 and a subtype of brain cancer. The phase 1 results showed promising results in endometrial cancer, especially in aggressive EC. My friend takes 5 ONC201 pills once a week. ONC201 acts by blocking the molecular pathways that drive cancer cell growth.
Here are links to the clinical trials and news stories: https://clinicaltrials.gov/ct2/show/NCT03099499
https://clinicaltrials.gov/ct2/show/NCT03485729
https://www.philly.com/health/brain-cancer-oncoceutics-philadelphia-dopamine-fda-20181205.html
https://people.com/health/teacher-brain-tumor-week-to-live-now-thriving/
This is very interesting. My niece lost her husband to brain cancer. Her bed started shaking the first day of her new teaching job, and she found her husband on the floor seizing. Five years later, he was dead. She hadn't married until her late 20's and he was the love of her life. Her life has continued to be a horror show after that happened, but I won't go into that here. I'm sure it would have been nice for that drug to come out while he was still alive.
I wonder where the other clinical trials are happening. The trouble with them is that you run the risk of getting a placebo. With a cancer this aggressive, I don't have time to deal with a treatment that might not be doing anything in the case of receiving a placebo. I was a stage IVb at diagnosis with UPSC. I can certainly see it in your friends' case because she has the problem with chemo not working. Chemo does seem to work on me for a period of time (a seven year remission with Carboplatin and Taxol, but only two years with Carboplatin (Cisplatin for the last round due to developing an allergy to Carboplatin) and Gemzar.
It sounds like the drug has great promise for certain cancers. Maybe it will be in widespread use for my next recurrence if I survive this one. Thanks for letting me know about it.
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derMausderMaus said:CyberKnife treatments are
CyberKnife treatments are different than external radiation, where the usual protocol is 250=-30 daily treatments. CyberKnife is usually just 4-5 treatments, spread over two weeks. Not so bad if you had to go out of area for a little while, perhaps.
Were you saying that the usual protocol for radiation treatments is 25-30 daily treatments? A few other characters got in the way. Do you know if the treatments are usually outpatient treatments or if you have to be admitted? We're still catching up with bills from Christmas and 3 grand of repair bills on my old car last year, four new tires for both our cars, and new $6,000 hearing aids for my husband. A couple of weeks in a motel or hotel would definitely break the budget. The cat doesn't travel well and I'd have to deal with boarding her. We do it once a year for our vacation in Maine, and we both dread the almost hour trip to the boarding facility.
I want to let you know that I found my CT scan report on the patient portal today. We'll definitely be hip buddies. My cancer is also in the psoas muscle on the right side plus in the iliacus muscle. The stomach and bowel showed "no worrisome pathology." There was no lymphadenopathy in the peritoneum or retroperitoneum (my cancer was there the last time). There was no hernia in the abdominal wall (it had felt like it was back at one pointI). The benign appearing liver cyst I've had for years wasn't even mentioned. The bladder was unremarkable "for the degree of distention." The bones section said "Nothing acute. No convincing bone metastases. There were similar appearing multilevel degenerative changes of the spine." They had compared it to my CT scan from last July. So all in all, I think this is very good news. I expected I'd have some GI cancer after having the GI bleed. I still don't understand the bleeding unless it was caused by hemorrhoids, but they haven't bothered me for a long time. I'm really hoping to avoid another surgery. I told my husband last time that I wouldn't go through another surgery like the first two ever again. I hope I don't have to....
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pinky104 said:
derMaus
Were you saying that the usual protocol for radiation treatments is 25-30 daily treatments? A few other characters got in the way. Do you know if the treatments are usually outpatient treatments or if you have to be admitted? We're still catching up with bills from Christmas and 3 grand of repair bills on my old car last year, four new tires for both our cars, and new $6,000 hearing aids for my husband. A couple of weeks in a motel or hotel would definitely break the budget. The cat doesn't travel well and I'd have to deal with boarding her. We do it once a year for our vacation in Maine, and we both dread the almost hour trip to the boarding facility.
I want to let you know that I found my CT scan report on the patient portal today. We'll definitely be hip buddies. My cancer is also in the psoas muscle on the right side plus in the iliacus muscle. The stomach and bowel showed "no worrisome pathology." There was no lymphadenopathy in the peritoneum or retroperitoneum (my cancer was there the last time). There was no hernia in the abdominal wall (it had felt like it was back at one pointI). The benign appearing liver cyst I've had for years wasn't even mentioned. The bladder was unremarkable "for the degree of distention." The bones section said "Nothing acute. No convincing bone metastases. There were similar appearing multilevel degenerative changes of the spine." They had compared it to my CT scan from last July. So all in all, I think this is very good news. I expected I'd have some GI cancer after having the GI bleed. I still don't understand the bleeding unless it was caused by hemorrhoids, but they haven't bothered me for a long time. I'm really hoping to avoid another surgery. I told my husband last time that I wouldn't go through another surgery like the first two ever again. I hope I don't have to....
Regular external radiation is generally 25-30 daily rounds. It's outpatient and takes about 30 minutes total, from the time you check in to the time you leave. CyberKnife is a different; I had 5 treatments at 2-3 day intervals. Those treatments were also outpatient and ran about 20-30 minutes each. You can get external radiation most places but CyberKnife is a specialized treatment so you have to go somewhere that actuallys owns that equipment. Are they going to biopsy this tumor? I ask because that's the same general location as mine (even on the same side) and mine is intestinal of some sort, not uterine. PM me if you'd like to discuss more, okay? Hugs, B
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Studies aren't necessarily vspinky104 said:ONC201
This is very interesting. My niece lost her husband to brain cancer. Her bed started shaking the first day of her new teaching job, and she found her husband on the floor seizing. Five years later, he was dead. She hadn't married until her late 20's and he was the love of her life. Her life has continued to be a horror show after that happened, but I won't go into that here. I'm sure it would have been nice for that drug to come out while he was still alive.
I wonder where the other clinical trials are happening. The trouble with them is that you run the risk of getting a placebo. With a cancer this aggressive, I don't have time to deal with a treatment that might not be doing anything in the case of receiving a placebo. I was a stage IVb at diagnosis with UPSC. I can certainly see it in your friends' case because she has the problem with chemo not working. Chemo does seem to work on me for a period of time (a seven year remission with Carboplatin and Taxol, but only two years with Carboplatin (Cisplatin for the last round due to developing an allergy to Carboplatin) and Gemzar.
It sounds like the drug has great promise for certain cancers. Maybe it will be in widespread use for my next recurrence if I survive this one. Thanks for letting me know about it.
Studies aren't necessarily vs placebo. A lot of times they compare current standard of care vs a new approach (whether that's a new drug, or a new combination of drugs/radiation). Especially with cancer, they're not going to leave anyone untreated for whom treatnent is indicated (for example, they might use a placebo if the standard of care is currently no treatment, like for early stage disease). You still have to be ok with being randomized to an unproven treatment, but not no treatment.
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This IS good news!! So gladpinky104 said:derMaus
Were you saying that the usual protocol for radiation treatments is 25-30 daily treatments? A few other characters got in the way. Do you know if the treatments are usually outpatient treatments or if you have to be admitted? We're still catching up with bills from Christmas and 3 grand of repair bills on my old car last year, four new tires for both our cars, and new $6,000 hearing aids for my husband. A couple of weeks in a motel or hotel would definitely break the budget. The cat doesn't travel well and I'd have to deal with boarding her. We do it once a year for our vacation in Maine, and we both dread the almost hour trip to the boarding facility.
I want to let you know that I found my CT scan report on the patient portal today. We'll definitely be hip buddies. My cancer is also in the psoas muscle on the right side plus in the iliacus muscle. The stomach and bowel showed "no worrisome pathology." There was no lymphadenopathy in the peritoneum or retroperitoneum (my cancer was there the last time). There was no hernia in the abdominal wall (it had felt like it was back at one pointI). The benign appearing liver cyst I've had for years wasn't even mentioned. The bladder was unremarkable "for the degree of distention." The bones section said "Nothing acute. No convincing bone metastases. There were similar appearing multilevel degenerative changes of the spine." They had compared it to my CT scan from last July. So all in all, I think this is very good news. I expected I'd have some GI cancer after having the GI bleed. I still don't understand the bleeding unless it was caused by hemorrhoids, but they haven't bothered me for a long time. I'm really hoping to avoid another surgery. I told my husband last time that I wouldn't go through another surgery like the first two ever again. I hope I don't have to....
This IS good news!! So glad to hear nothing is worrisome about the stomach and bowel and no metastases to bones. You got this! I like Lulu's idea of asking for a PET Scan. May give a better resolution on where the problem areas are so that you guys can determine the next steps. Best of luck, Pinky!
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Excellent resources, MoeKay.
Excellent resources, MoeKay. I am always so impressed with the knowledge you bring to this board. Thank you!
I looked at the clinical trial in the second link and both arms of the study are receiving ONC201. LisaPizza is right. You never not get any treatment with cancer. The comparison usually is whatever the standard care vs whatever new treatment they are interested in testing. In this case, one arm is with biopsi and the other one without but both are receiving ONC201 as intervention.
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Good grief,
This cancer is persistent.
I am no medical expert. However, I would think a few things need to be considered.
First of all, I am taking it that the onco is SURE that is a malignant tumor. That might sound pretty obvious; perhaps even a little obtuse on my part. But I have had my share (and had it up to here) of radiologists I nickname "freckle checkers" ... those who seem to think EVERY freckle on a CT scan is cancer, whether it is or not. You ladies have probably read enough of my diatribes about these radiologists ... or maybe not, since so many posts have disappeared. False-positives are not uncommon in CT scans, and they can cause a whole lot of worry and expense for no reason.
However, the problem area appearing in the same problem area as before is a worrisome sign. Hopefully, there will be some sort of follow-up.
Your body insists on trying to heat that oven, but your goose is not cooked. For one thing, there are other chemo treatments to try, and your onco may suggest a maintenance drug as well.
The cancer being in a specific area is indeed one positive sign .... though "positive" might not be the best word here. I know oncos are divided as to whether Stage 4Bs should also have radiation at first-line, but many firmly do not believe in doing that. This might help for once ... radiation is not off the table. That leaves one more possibilty to whup this beast's butt. If it's in just one area, targeted radiation might be a better idea.
USUALLY, Stage 4s don't get placebos in trials, from what I heard. They might get a standard treatment ... you won't know what will be in your pill, injection or infusion. I know in my case, one trial the onco brought up had a speciifc drug v. taxol. But I do not believe it will be saline v. the test drug, for instance. (I think LisaPizza is indicating the same idea.
)
Nine years is phenomenal. Let's hope that by year 10, you'll be NED and celebrating a fantastic anniversary.0 -
No Placebo
Yes, I believe everyone in the study my friend is in is getting the ONC201. My friend was offered the option of trying another type of chemo, but her gyn-onc, who is a nationally known gynecologic oncologist who has, among other accomplishments, written treatises used by the other gyn-oncs, told her that she would have about a 20-30% chance of response with another traditional chemo. He said if he were in my friend's position, he would give the ONC201 a try as it looked "promising" for some endometrial cancer patients in the phase 1 trials.
There is a lot I don't know about qualifying for this study. I know you need to have had a prior course of treatment which failed. If someone's cancer came back even several years after finishing chemo, is that enough for them to qualify? Or does treatment have to have been more recent, like my friend. My friend can stay in the trial as long as there is not more than 30% progression, at which time she could try another type of chemo. I would also be interested to know if someone can qualify for the trial shortly after having surgery and/or radiation, if they previously had a course of chemo. Admittedly, I have not read the qualifications carefully, but this could be something to discuss with your gyn-onc when exploring all treatment options.
MoeKay
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Thinking of you today Pinky.
Thinking of you today Pinky. The ladies have given you loads of information to digest and consider. Just wanted to add my support and prayers that whatever treatment you land on, will get you another NED dance.
Love and Hugs,
Cindi
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Thank you all
Thank you all for the great information and support, especially on the clinical trials, removing my worry about getting a placebo. And thank you, DerMaus, for the info. on the radiation treatments. I will go to my appointment this afternoon hopeful that I may be able to skip surgery this time, which has been extensive each time I've had it. It would be nice to skip chemo too, but I can handle that better than I can the surgery.
I just got done with two hours of shoveling ice and snow. My husband used his lawn tractor's snow blower attachment to do our 400' of driveway (actually two driveways) and I had to do the places it couldn't get to like the sidewalk, the path to the shed and the ramp up to it so he could get the tractor out, plus near the garage doors where the tractor can't get close enough. The snow with ice on top was heavy and with my chemo induced anemia, I was tempted to give up. I had to keep stopping to catch my breath in the second hour. My husband is 74, so I didn't want to leave it all for him to do. We're a team. Well, it's all done now. We're expecting more snow on Friday. Just what we need. I hope we don't get as much, or at least don't get any ice.
Again, thank you everyone for all your helpful replies.
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derMaus
I highly doubt they're doing a biopsy, but I'll find out for sure this afternoon. They should have my CA-125 results when I go there, as they were done stat on Monday. I'm not sure if they're asking for a PET scan this time or not. They haven't yet. They did last time (in 2017). I know docs worry about my getting too much radiation, but so far, I've been fine with it. My kidney function is still good.
I had the intestinal cancer last time, and had a resection of my large intestine for that, plus one of my small intestine for where my intestines grew into the mesh from my incisional hernia repair. I've been worried that it was back, with the diarrhea I've had and the GI bleed last week. I was very surprised that nothing showed up there in the CT scan. My cancer was also in the peritoneum, retroperitoneum, and the rectum last time.
I can actually feel the new mass now, and I've been noticing it for a couple of weeks. It feels like my pelvis is a couple of inches wider on the right than on the left. I had assumed I had another GI cancer, as it's about where the ascending colon cancer was last time. I'm afraid my GYN/onc. might want to do an exploratory surgery to check it all out. I'm hoping to skip the surgery this time around. I know radiation has plenty of complications it causes, from what I've read on here, so I suppose I should be worried about that.
I'll get back on here tonight and let everyone know what the next step is.
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The Planpinky104 said:derMaus
I highly doubt they're doing a biopsy, but I'll find out for sure this afternoon. They should have my CA-125 results when I go there, as they were done stat on Monday. I'm not sure if they're asking for a PET scan this time or not. They haven't yet. They did last time (in 2017). I know docs worry about my getting too much radiation, but so far, I've been fine with it. My kidney function is still good.
I had the intestinal cancer last time, and had a resection of my large intestine for that, plus one of my small intestine for where my intestines grew into the mesh from my incisional hernia repair. I've been worried that it was back, with the diarrhea I've had and the GI bleed last week. I was very surprised that nothing showed up there in the CT scan. My cancer was also in the peritoneum, retroperitoneum, and the rectum last time.
I can actually feel the new mass now, and I've been noticing it for a couple of weeks. It feels like my pelvis is a couple of inches wider on the right than on the left. I had assumed I had another GI cancer, as it's about where the ascending colon cancer was last time. I'm afraid my GYN/onc. might want to do an exploratory surgery to check it all out. I'm hoping to skip the surgery this time around. I know radiation has plenty of complications it causes, from what I've read on here, so I suppose I should be worried about that.
I'll get back on here tonight and let everyone know what the next step is.
I saw my GYN/onc. this afternoon. What's going to happen is first he's going to have my regular oncologist set me up for a PET scan. He'll be looking to see if there is any intestinal involvement that didn't show up on the CT scan. If there is, I'll have to have surgery again. He hopes that won't have to happen as he says it's not an ideal situation. He doesn't like to do repeat surgeries. It has something to do with all the layers in there. He explained that if he had to lift the bowel, remove the cancer and then put it back down into its bed next to the muscle, there's a higher chance it could develop cancer from the muscle nearby. Either way, if I need surgery or not, I have to go see a radiation oncologist at the hospital where I used to work. He had high praise for the radiation oncologists there. We discussed CyberKnife, but it's not done in this area. The closest place is Boston. The traffic in Boston is horrible, the hotels are expensive, and the parking garages when I was last there were charging over $20 an hour. I'm sorry if I'm offending anyone who lives there. I'll stick with the normal course of radiation at the hospital closer to home, even though it will require a lot more visits. He agreed with derMaus on how many treatments it will probably be. I asked him about the GI consult that still hasn't been scheduled, if I still need to have it, and darn it, he said "yes." I hate the prep for those. My butt's usually raw for a week afterwards. I know, too much information! I'm wondering how long it's going to take to get that appointment. Maybe I'll have my oncologist try to push to speed it up.
I asked about the pain I had about where my bladder would be. He said he didn't doubt that I had it. He said it would be referred pain from the mass in the muscle. He didn't seem to have any doubts that the cancer was back. I just realized that I never asked him what the CA-125 was and he never volunteered it. I'll have to ask that tomorrow at my other oncologist's appointment.
I hope I covered everything. If I didn't, let me know.
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I like this plan. Glad thatpinky104 said:The Plan
I saw my GYN/onc. this afternoon. What's going to happen is first he's going to have my regular oncologist set me up for a PET scan. He'll be looking to see if there is any intestinal involvement that didn't show up on the CT scan. If there is, I'll have to have surgery again. He hopes that won't have to happen as he says it's not an ideal situation. He doesn't like to do repeat surgeries. It has something to do with all the layers in there. He explained that if he had to lift the bowel, remove the cancer and then put it back down into its bed next to the muscle, there's a higher chance it could develop cancer from the muscle nearby. Either way, if I need surgery or not, I have to go see a radiation oncologist at the hospital where I used to work. He had high praise for the radiation oncologists there. We discussed CyberKnife, but it's not done in this area. The closest place is Boston. The traffic in Boston is horrible, the hotels are expensive, and the parking garages when I was last there were charging over $20 an hour. I'm sorry if I'm offending anyone who lives there. I'll stick with the normal course of radiation at the hospital closer to home, even though it will require a lot more visits. He agreed with derMaus on how many treatments it will probably be. I asked him about the GI consult that still hasn't been scheduled, if I still need to have it, and darn it, he said "yes." I hate the prep for those. My butt's usually raw for a week afterwards. I know, too much information! I'm wondering how long it's going to take to get that appointment. Maybe I'll have my oncologist try to push to speed it up.
I asked about the pain I had about where my bladder would be. He said he didn't doubt that I had it. He said it would be referred pain from the mass in the muscle. He didn't seem to have any doubts that the cancer was back. I just realized that I never asked him what the CA-125 was and he never volunteered it. I'll have to ask that tomorrow at my other oncologist's appointment.
I hope I covered everything. If I didn't, let me know.
I like this plan. Glad that you will get a PET scan. If there is any other area of concern, PET scan would reveal it. Good luck with the GI consult!
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Thank you for the update,
Thank you for the update, Pinky. I know a lot of us will be glad to see that there's a solid plan of action in place. I'm also glad you're in for radiation --- well, nobody's really GLAD to see someone have radiation, but I think you'll get a lot of relief from it. I know it's served me well, even despite the side effects. You're in my prayers.
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Pinky, thanks for the update.
You and your husband are facing a tough time, but having a plan in place and moving forward must be a relief. The stress of not knowing is so difficult. Now you can plan a positive course of action with your medical team that will hopefull put you on the road to recovery. You are in my thoughts.
xxoo
Denise
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Cyberknife locations
I'm not sure where you'd be coming from, but downtown Boston is not the only place that offers Cyberknife around here. There is a place in Worcester, where outside costs would be much better. Other places, like Providence and Hartford, have it, too. A lot of times these places will validate your parking ticket to get you reduced rates from the general public, so be sure to ask about that, too if the need ever arises.
https://www.cyberknife.com/locations
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