CT done today

I'm so glad you have a plan to follow. It's nice to be able to set your mind on the plan and have that to focus on.

Lulu7582 said:

Thank you

Yes thanks for the update. All the best with this plan. I have my PET scan tomorrow to check and see if the everolimus and letrozole are stopping the progression. Praying for good results for both you and me. I declined my colonoscopy (had one in 2014 was due in 2017) but decided that was the least of my problems and if there are any new hot spots the PET will show them up....lol! Anyway all the best Pinky with this plan. xo

Good luck with your scan. Hoping for good results for you and Pinky. Let us know how everything turns out.  I am thinking of you and sending good vibes. 

xxoo

Denise 

pinky104 said:

Today's Addition to the Plan

I saw my other oncologist today (not the GYN/onc).  He showed me the actual picture of the mass in the scan itself.  He pointed it out as "fullness" in the scan.  It was a large shaded area, quite different from the empty space on the other side of the picture.  We discussed the GI bleed.  He suspects it happened due to bowel irritation from the mass in the muscles pressing on it.  I hadn't thought of that.  But he wants to send me for the PET scan to be sure, and he doesn't want to do the biopsy.  He thinks that since we know the GYN/onc. couldn't get all the cancer the last time and it's showing up in the same place, he highly doubts it's anything else.  I agree with him there.  My husband told him about the GI guy who still hasn't called to get me scheduled me for a colonoscopy, and he's going to try to push the guy to get me in within the next two weeks.  He said that office is crazy busy, but they just hired another doctor, so things might improve.  

He hadn't heard from my GYN/onc. yet (there probably wasn't time for the guy to call him yet, with his other patient appointments), so I had to explain what the GYN/onc. had told me yesterday afternoon re:  surgery vs. no surgery depending upon whether the cancer is found in the intestines or not, radiation oncology one way or the other, etc.  He commented that if there's cancer found in the PET scan anywhere else (intestines or otherwise), I'm still sensitive to platinum based chemotherapy, so I could still have that to help rid me of the cancer.  So now I have a third option, one I'd really prefer to skip this time, but I may not have that option.  He feels that radiation would probably work the best to fix my nerve problems, as long as it can be focused on a limited area.

I asked today the question I'd forgotten to ask yesterday about the latest CA-125 reading from the blood draw that was done Monday.  He told me it was only 21.9, stil in the (supposedly) normal range.  He showed me a graph of how it had changed, and the line was taking a rapid rise upward, but I couldn't believe it was still so low.  The last time I had cancer, it went from 14.2 to 129.2 in just two months, and the second reading was one that was taken two weeks AFTER my surgery. So it's no wonder that I was the only one who thought I had cancer up until recently, both with the negative CT scan this past summer and the low CA-125 readings all along.  It really makes a person wonder how to know when it's really there.  Speaking of which, I apologize to OldBeauty for not replying to her comment much earlier.  I don't really know what to tell her about her hip problems.  I know I've been dealing with what my orthopedist called greater trochanteric bursitis since Sept. and I'm wondering if getting the cancer out of these two muscles will improve that.  Time will tell, I guess.  It does seem like it would be highly unusual that there could be any chance that she has cancer in both hips or hip muscles at once.  However, I would think she could have it in one, and the other muscle might be compensating for the pain in the first muscle.  That could be causing her to walk differently and throw her back out of alignment, which might give her hip muscle pain.  If the treatment she gets doesn't work, it might be worth her time to see a good chiropractor.    

My oncologist had his receptionist schedule me for a PET scan next Tuesday afternoon, and he'll see me two days later on Thurs. morning to tell me the results.  I'm going into the Cancer Center there for a port flush on Thurs., the 28th, so she was nice enough to save me a second trip up there and schedule me to meet with the radiation oncologist on the same day, an hour before the port flush. So it looks like I won't be starting radiation for over two weeks, maybe even longer if I need surgery, too.

Again, thank you everyone for all your positive comments and helpful information.  I'll let you know my results toward the end of next week. 

I appreciate your insight pinky.  I am on heightened awareness about my hip, even though I just had a CT in December that was clear (except for my SPN in my left lower lobe).  I have another CT in early April.  So it will be interesting in the interim to see if the myofascial release therapy changes anything.  It's hard to manage one's reaction to pain points...is it old age creeping in or....???

Anyway, I'm sorry you are facing treatment again, but I am heartened that several options for attack are under consideration.  The PET, I hope, will confirm that this latest is confined to that muscle.  Who is the specialist that will discuss with you the effects of going after a lesion in muscle mass?  The radiation oncologist?  I'm curious about what these soft tissue lesions are and how they invade muscle.  I invariably think of invasion to an organ.

Best wishes to you, pinky, as you chart your path forward.  Oldbeauty

Pinky, I'm happy to hear that your treatment team has presented you with a number of options to address your situation.  Wishing you the best of luck as you begin this new chapter. 

Old Beauty, have you had your hips x-rayed?  I had a total hip replacement in 2011, and should have had it about 5 years sooner!  If your myofascial release does not give you relief, I would see an orthopedist to make sure that your issue is not hip arthritis or another orthopedic issue.  I fiddled around with physical therapy and chiropractic treatments, among other things, when what I really needed was a new hip!  Your hips may be fine, but I would not accept the opinion of a DO that your problem is not your hips.  I would get a thorough evaluation by an experienced and highly-respected orthopedist.  Good luck to you in solving the hip-pain mystery!

This is making me a little nervous. I had double knee replacement surgery in Oct. Just before I had a little what I thought was sciatic pain but it went away 4 days before surgery. At the 3 week mark post op after having weakness and pain in the right knee that wasn’t in the left, I developed severe pain in my hip area. Since then I have had a bone scan and xrays that were clear have done massage Chiopractor and physio with no success. I have an MRI on Thurs. I just feel that in almost 4 months it should have improved on its own. This pain is brutal. I cannot sit stand or walk without feeling the full affects even with pain meds. I’m usually a pretty tough cookie but this is getting the best of me. We went to Bali and the Phillipines in Jan and it was the toughest thing I have done in my life. It was very hectic and I am sure it made it worse. We have another planned trip that was cancelled last year due to treatment, (in less than two weeks) so I am sure that I will be bringing the pain with me. Sigh....

MoeKay said:

Sorry about your hip pain

Wannabeatit, I'm sorry you are still having severe pain, including hip pain, several months after your double knee replacement surgery.  I know you said that you have had a bone scan and x-rays that were clear, but I wasn't sure if you had these tests on your knees or hip.  In any event, I do know from my own experience and that of relatives and friends that it's often difficult to pinpoint the source of lower extremity orthopedic pain.  For example, last year my brother called me to tell me that he saw a spine surgeon who said that my brother needed back surgery.  He was having leg pain on both sides as well as lower back pain.  I told my brother that he needed to get a second opinion as to the need for back surgery.  I did some research and found my brother another back surgeon, who he consulted.  Lo and behold, the second doctor told my brother that while his back was not perfect, it was not the source of his pain.  Rather, the second opinion orthopedist did some manual manipulation of his legs and had him perform certain physical movements.  After reviewing the x-rays and performing the physical tests, he told my brother that his pain was originating in his hips and he was referred to an orthopedist who specialized in hips and knees.  That specialist also performed a number of tests in the office, bending his legs into various positions, and also concluded that the source of the problem was the hips.  My brother had both hips replaced last October.  He recovered quickly from the surgery, is pain free and back to doing all his activities.  But I always think how differently things might have turned out had he undergone unnecessary back surgery. 

At this point, I think your orthopedic surgeon should be working with you to resolve whatever issues are causing you to continue to experience significant pain.  I know that sometimes it takes people longer for pain to resolve after joint replacement, and you may just be one of those individuals whose body needs more time to settle down.  If you don't see improvement in a reasonable period of time, perhaps getting another opinion might not be a bad idea. 

Good luck in getting your problem resolved very soon!

My problem seems that I have lots of opinions but when they try to execute a game plan nothing works. My orthopaedic surgeon is completely stumped. He is one of the best around but it might not be a bad idea to get a second opinion. You would think with the pain so severe that they could pinpoint the problem. The scan was on my lumbar hip and knee. They are all pretty sure it is muscles/tendons but don’t know why. 

pinky104 said:

To Wannabeatit

I had horrible hip pain in November and December.  I had seen my orthopedist months ago and he told me, without an X-ray, that I had greater trochanteric bursitis.  Since I have an allergy to steroids, I couldn't have an injection done.  He told me all I could do was to put ice on it, which may help at times, but you can't keep ice on it while you're walking around.  The pain bothers me a lot when I go to bed.  I'm now taking two extra strength Tylenols and two Gabapentins every night when I climb into bed.  I also sometimes use over-the-counter Lidocaine cream, which helps a lot even thought the pain is supposed to be coming from further in.  I'm now wondering if I have bursitis at all, or if this is just from the muscle cancer.  

 

Yesterday, I googled "cancer of the psoas muscle" to see what I could find.  It brought up a Japanese medical paper from 2018 (which I also found later on several different websites including the National Institute of Health's).  The paper is called "Malignant psoas syndrome associated with gynecological malignancy:  Three case reports and a review of the literature."  If it's not what I have, it sounds a lot like it.  It's a bit scary with two out of the three women who were studied dying within 7 or 8 mos. from the first onset of symptoms.  I've already had the symptoms much longer than that.  One of the women who died had UPSC, but I think she was the one who refused chemo.  The one who lived had treatment with a chemo called TC and was taking Avastin.  Avastin is one of the things I may get.  You may want to read this paper as they mention severe hip pain.  They say this syndrome is more common in gynecologic cancers than in other cancers, although it's extremely rare (but possibly very underdiagnosed, too).   

My Cancer Center called me with a cancellation of an appointment for the radiologic oncologist that they wanted to offer me, and I took it.  It's a whole week earlier.  They moved my oncologist appointment to later in the day so that I could see one guy right after the other.  I also finally got the call for my GI consult, which will be Wed. at 1 pm.  The gastroenterologist who diagnosed my cancer the last time is out of town, so he asked another guy to take his place. The other guy is pretty good looking from the picture on their website.  I'm glad I'll be getting it over with, but I'll have two bad days in a row.  My PET scan, which is a full body one for the first time, is at 2 pm on Tuesday.  I'm allowed to eat up until 8 am but then can have only water until the procedure.  However, the colonoscopy requires a liquid diet the whole day before, so I won't be able to eat a regular breakfast before my PET scan.  I'll only be allowed clear liquids.  I'll just barely get home in time from the PET scan to start the bowel prep for the colonoscopy, and then I'll spend the whole night running to the bathroom.  I won't be able to eat until after the Wed. afternoon colonoscopy, so I'll be without "real" food for the better part of two days.  My husband is afraid I might pass out.  I've been feeling worse than ever before with my previous cancers.  Some days, I get a little bit of a sensation like I might pass out.  I went to the patient portal and printed out my lab results, which probably weren't in the system yet on Thurs. when my oncologist saw me.  There were a lot of lab results that were off, some high, and some low.  I was surprised that my hemoglobin went up from 11.5 in Jan. to 11.8, but my red blood cells were very low.  If I have to have surgery, I wouldn't be surprised to need a transfusion first or at least during the procedure.  I've already had multiple transfusions previously.  They may not want to do it because of my high ferritin level, though.  

I got a call from the PET scan imaging center telling me that Medicare will require me to sign something acknowledging I've seen the cost of the PET scan I'll be having.  It's a form that has to be signed by anyone having at least 4 PET scans.  They said I wouldn't have to pay anything, just sign the paper.  I'm glad they forewarned me.  They said that the price is extremely high, so I shouldn't be shocked.  Does Medicare actually think I want to be going through this expensive testing on a whim?  I'd really prefer not to be needing it! 

 

 

I am hoping that the MRI will locate the problem but after talking to a few therapists they feel that it might be inconclusive. Go figure. I have lost 25 lbs and somehow got myself in a state of deep ketosis after eating rice and noodles for 4 weeks. I don’t get it. My brain starts to re evaluate everything and then I see some of these stories and start to worry. It’s not just me. My chiopractor doctor and physiotherapist all brought up cancer recurrence. My GP even suggested to cancel my trip as an option. I’m sure they are just being overprotective given there are no clear answers but it is making me a little nervous.