New here, and confused as anything.

evolo58

My story started mildly ... post-menopausal pink stuff after strenuous exercise. I have a prolapsed bladder AND fibroids, plus I didn't hydrate properly. Bad, bad idea. At first, since I'm prone to kidney stones, my family doctor thought I had those. My kidney function was indeed impaired. She suggested Poise Impressa for the prolapse. Another bad, bad idea. I think these things were probably based on medieval torture devices. Bleeding for some time after that. 

My doctor opted to have me go for an ultrasound. It found endometrial hyperplasia and the remnants of what we believe are my two fibroids (should have taken that !@#$ uterus out when they caused problems the last time!), but no acute abnormailities other than the hyperplasia. Suggested a gyno consult. Makes sense. My lining was 17mm, and my mother had UC (adenocarcinoma, Stage 1). 

My doctor also ordered a CT scan for the kidneys. What it found was so strange that every medical professional looking at it was shaking their heads initially. Nodularity on the peritoreum and omentum consistent with cancer, nodularity on the liver "likely' to be carcinamatosis. An indeterminate nodule on one adrenal gland that COULD be metastatis-related. Enlarged uterus consistent with cancer. That was it. The radiologist commented to my family doctor that he wasn't that concerned about the adrenal nodule, then wrote that it could be cancer. Didn't mention the liver at all in the impressions. And we skipped a whole bunch of stages in-between. 

The gyno surgeon oncologist did a very thorough physical exam. Found nothing of alarm with the physical. Then she did a biopsy. When I got results after a few days instead of the customary 7 - 10, I knew things weren't good.

My gyno oncologist moved up my appointment. I went from a "Well, maybe this is a Stage 1 at best, and probably adenocarcinoma" to "Stage 4. UPSC" in a day or two. 

What ... the?

I am trying to seek other medical opinions on those two tests. That CT scan seems really, really "off" to me, and most medical professionals agreed for a while. It looks like we have tests from two different women! I don't doubt the UPSC ... biopsies are usually accurate, though this form is a real pain in the posterior. It's the conflicting reports that are causing me far too much grief.

Has anyone else had issues with CT scans or other tests that seemed "off"? I feel like I'm trying to crawl out of the rabbit hole. Oh, and I start chemo on Tuesday. 

Hello, by the way!

ckdgedmom

I have Stage 4B UPSC

My CT scans looked "normal"...nothing showed on them to alarm the radiologist...not until biospy  did it show UC...they didn't pinpoint it as UPSC until after my hysterectomy.

I had hysterectomy and then chemo and then was referred to radiology oncologist---he is the only one to catch that two of the lymph glands in my neck were cancerous...

I'm sorry this is happening to you...I understand how scary it is and this is a good place to find some answers/comfort...

MeinMississippi

I read this and all I can

I read this and all I can think is bless this poor lady's heart!  You have a lot going on. Sounds like you do need a second opinion. I hope you get all of this resolved quickly. Good luck on your chemo. I will keep you in my thoughts and prayers. 

Jcpik2591

I have just been diagnosed

I have just been diagnosed with papillary seros carcinoma. I’m scared, confused and just in a daze! Going for the PET scan and CT on Tuesday after meeting with the oncologist surgeon on Monday. 

Jairoldi

Jcpik2591 said:

I have just been diagnosed

I have just been diagnosed with papillary seros carcinoma. I’m scared, confused and just in a daze! Going for the PET scan and CT on Tuesday after meeting with the oncologist surgeon on Monday. 

It sure is scary. It Seems to

It sure is scary. It Seems to get a bit more manageable once you have a treatment plan and have that to focus on. Best wishes for a solid plan, skilled doctors, and peace of mind.

NoTimeForCancer

evolo58 and Jcpik2591, I am

evolo58 and Jcpik2591, I am so sorry to hear you have had to find us.  I think all the ladies here will tell you it is overwhelming and mind-boggling when you hear 'cancer' and try to figure it out.  I think we can all remember that experience and so we can all feel for both of you.

Please, try to take a breath and I would recommend you make sure you are working with a gynecologic oncologist.  They will make a plan to best help you and know that we are here with any questions you have as you go along.  You are not alone.

TeddyandBears_Mom

evolo58 and Jcpik2591,

evolo58 and Jcpik2591,

Just wanted to welcome you both and suggest that you get an anti-anxiety med to help you get through the initial processes.  This is a scary time and it seems the hardest part of the journey. So sorry you are having to go through it.  Please come back and ask us anything. And, let us know how you are doing.

Love and Hugs,

Cindi

Soup52

Welcome to our group! I

Welcome to our group! I second the suggestion of anxiety meds. For some reason the beginning of this journey has been the most difficult. As time went by and a treatment plan was in place it was a bit better. We all morn the loss of our health. Prayers for your strength.

NoTimeForCancer

Soup52 said:

Welcome to our group! I

Welcome to our group! I second the suggestion of anxiety meds. For some reason the beginning of this journey has been the most difficult. As time went by and a treatment plan was in place it was a bit better. We all morn the loss of our health. Prayers for your strength.

yeah, I remember the anxiety.

yeah, I remember the anxiety...for me it did subside after I  had met my gyn onc and we discussed the surgery and plan.  It is the waiting that is the hardest part.

evolo58

For me, the anxiety has

For me, the anxiety has substantially increased after meeting her (she is a gyno ocnologist, by the way).

I just cannot fathom how a cancer can present from Stage 1 to Stage 4 on a CT scan with no clear signs of the other two. I know UPSC is a weird cancer. It is often diagonsed in later stages because it's just so sneaky re symptoms. I know it can mess up Stage 1 staging really well because doctors can't diagnose based on myometrial invasion and other factors. Even a tiny mass can cause huge problems. But the more I'm reading, the less sense this CT scan makes. In the meantime, the ultrasound and physical exams don't even seem to exist anymore. I was under the impression that an onco takes ALL into account.

When I ask doctors and nurses, even my non-onco ones,I get silence. I'm getting the impression that they're as stumped as I am; that they don't know either. This is NOT reassuring me, and I doubt an anti-anixety drug would help at this point, though admittedly I might want to take it later. Not knowing is bad. Still not knowing is even worse! If she just agreed this was unusual, and HOPEFULLY it was positive news (she can't know until she goes in there, I know), I would feel better.

And as far as I know (unless someone isn't telling me anything ... again), no one knows where the original mass is even located. I doubt it's invisible. I can't help harboirng the fear that after all of this, my gut instincts may be right ... that there is something else at play here, and it's really going to tick me off when I find out.

At the risk of sounding naive, I thought this would be like most other cancers ... you find the mass, you gauge stage level based on what usually happens during these stages, you make a treatment plan. I have been Googling based on my experience to see if this is common, because the silence is truly awful for me. I haven't found anything here or elsewhere yet.

And thank you for the warm welcomes! I think the best news is that yes ... Stage 4 UPSCs CAN make it past those five years. That is a huge glimmer of hope. 

ckdgedmom

There is hope

one of my dearest friend's mom had UPSC 25 years ago and she is still one of the strongest women I know...no reoccurance or any other issues.

As for CT, as I said above, my CT scan looked totally fine and my gynocologist and her hubby (also gyno) were baffled because my CA125 was high. Until she did the biopsies when she did the D&C and hysteroscopy we didnt know what we were looking at...and even then the biopsies showed cancerous cells but it wasn't until they biopsied after my hysterectomy that it was determined to be UPSC...

what has your gyno oncologist suggested as next step?  It's all super scary and it is hard not having your doctor be able to give you answers.  Surgery was where we found most of the answers to all the questions about what was going on with me but it's pretty hard going in for a hysterectomy and not knowing what they will find.

The good news is that treatments have improved even in just the last few years. My radiology oncologist says that UPSC is far more treatable than before and he feels my prognosis is good. I'v had chemo (and I cold capped to keep my hair so if anyone wants to learn more on that I am happy to answer questions...but you must start before your first chemo), and radiation to two areas in my body (pelvis and neck). tomorrow I have a scan and I see my radiology oncologist on Thursday for hopefully the news I am dancing with NED...

Hang in there...the unknown is so scary so I feel sad that you are having to deal with that on top of knowing you have cancer...

xoxo

Anice

ckdgedmom

Fight girl!!!!!

No one can tell you how your battle is going to go and you have a good strong positive attitude that will help you fight...when my gyno called me with the news (she's also a good friend---I know that is weird) we both said "I am a survivor not a victim..." and we have continued that.  She met me at my gyno oncologist office and before the new doc walked in she said "this is where I stop being your doctor and turn in to your friend. You are in her hands now. I've put you with the best person here to beat this and she WANTS to treat you. Now fight!" and she walked out the door (and then showed up and scrubbed in for my surgery 10 days later...I know...I am blessed). Point being she put me into the attitude that I was going to win. I firmly believe a good portion of our battle with this horror is how we handle it. HOPE is as much a part of our treatment as chemo or radiation...

My radiology oncologist keeps telling me that I am going to be ok and I believe him...

Find a doctor who feels like your partner...my gyno oncologist and my radiology oncologist make me feel like I am in incredible hands...my rad oncologist is even named "Angel"...to me I knew I was in good hands when God gave me an Angel to fight this...

prayers for you...as for the chemo be sure to have some metamucil or the like to help combat the "plugging up" from the drugs and the anti nausea meds...and drink lots of water...

xoxo

pinky104

Stage IVB UPSC

I was diagnosed with stage IVB UPSC in March of 2010.  I went through surgery and chemo and went into remission.  This year, in a two and a half month period, my CA-125 went up 874%.  It was in the normal range in early Feb. and then my cancer grew very rapidly.  It wrapped itself around my ascending colon by the end of March and I had surgery in early April before it could obstruct my intestines.  Perhaps yours grew rapidly, too, to make such a big difference in your CT scans.  After surgery and chemo, I'm again in remission.  My GYN/onc acted like he expected it would come back again in about 5 years, so I've gotten smarter and started on Turmeric/Curcumin and Metformin, which, according to TakingControl58, works on 4 of my 6 genomic mutations that were found.  I have hopes that I'll beat it this time. 

evolo58

Chemo starts Tuesday.

Chemo starts Tuesday. Three 21-day sessions. So more waiting, I'm afraid! Then hopefully, I'll be a good candidate for surgery.

Sorry I overlooked the bit about your CT scan looking normal. This cancer is weirder than I thought.

Hope you're NED!

P.S. I am calling another top-notch cancer facility near me tomorrow and asking if I can get a second opinion during in the middle of a treatment. I still plan to go through with the chemo, since that is a usually-accepted part of this.

I think what is also galling me is that my surgeon did not even offer an ounce of hope. NO, I don't expect a rose garden. This is a tough, tough disease. But I think I read this somewhere here ... NO DOCTOR has the right to take all the hope you have away from you. Apparently, there is a doctor on this new hospital's site who specializes and is doing research in advanced-stage gyno cancers, with a keen interest in cancers such as UPSC. She may tell me the same thing, but if I see a positive attitude and comittment on her part (and hopefully, she sees the same for me), we will work together to get as long as a survival and a QUALITY  time left as we both can possibly do and the Good Lord will allow. My curent doctor is wrong. Five years is really tough, but five years is NOT IMPOSSIBLE. I see it on these boards with Stage 4s of different cancers.

It's worth a shot, anyway. I am NOT going to whimper in a corner.

evolo58

I hope so as well. Seven

I hope so as well. Seven years is fantastic! Eight, nine, ten, twenty years ... even better!

txtrisha55

evolo58 said:

Chemo starts Tuesday.

Chemo starts Tuesday. Three 21-day sessions. So more waiting, I'm afraid! Then hopefully, I'll be a good candidate for surgery.

Sorry I overlooked the bit about your CT scan looking normal. This cancer is weirder than I thought.

Hope you're NED!

P.S. I am calling another top-notch cancer facility near me tomorrow and asking if I can get a second opinion during in the middle of a treatment. I still plan to go through with the chemo, since that is a usually-accepted part of this.

I think what is also galling me is that my surgeon did not even offer an ounce of hope. NO, I don't expect a rose garden. This is a tough, tough disease. But I think I read this somewhere here ... NO DOCTOR has the right to take all the hope you have away from you. Apparently, there is a doctor on this new hospital's site who specializes and is doing research in advanced-stage gyno cancers, with a keen interest in cancers such as UPSC. She may tell me the same thing, but if I see a positive attitude and comittment on her part (and hopefully, she sees the same for me), we will work together to get as long as a survival and a QUALITY  time left as we both can possibly do and the Good Lord will allow. My curent doctor is wrong. Five years is really tough, but five years is NOT IMPOSSIBLE. I see it on these boards with Stage 4s of different cancers.

It's worth a shot, anyway. I am NOT going to whimper in a corner.

Hopefully they put in a port

Hopefully they put in a port and did not go straight into your veins.  I had a port put in before the chemo and it does safe the veins, so I have been told on this site.  Glad you found us.  Hopefully the chemo will do its job and shink the tumors.  I am 6 years NED from carsinoma sarcoma (MMMT) uterine cancer, another rare cancer they say.  It is doable and it is beatable.  Never let anyone tell you a time line.  Only One know waht that time is.  It is not the drs.  Best of luck and if you have questions, the ladies on this site are always here. trish