CT done today

pinky104 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

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

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....

 

 

 

 

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!

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.

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

pinky104 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!

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

I'd add, too, that Cyberknife is a brand name, so if you search on Cyberknife, you will only get places that have their brand machine. Searching on "stereotactic body radiotherapy" or SBRT might give you a fuller list of options.