In shock UPSC IIIC diagnosis (Incomplete Staging) Update

Beaner54

me again

I am 61yo, live in NY, have 2 children and 4 grandchildren.

janaes

Beaner, welcome to the board

Beaner, welcome to the board that no wants to be at.  Im glad you came.  It stinks getting cancer more than once.  the cancer i have now (uterine MMMt) stage 2 grade 3 is my second time around.  I had hodgkins lymphoma 23 years ago.  I wish you the best as you go see your doctor next week.  I too have two children.

Janae

rcdeman

janaes said:

I cant imagine what its like

I cant imagine what its like to be the care giver. I know its hard.  I see what my family goes through for me.  They have emotions too and i lnow they struggle.  I know you will do your best.  Thanks for your best wishes.

Thank you for your kind words

Thank you for your kind words, Janae. I'm sure we'll keep each other updated.

Will keep you in my prayers,
Rebecca

rcdeman

Beaner54 said:

I am new to this site.  I was

I am new to this site.  I was diagnosed with 3C endometrial cancer in 2011; had 3 chemo treatments, 28 external radiation treatments, 2 internal radiation

treatments, then 3 more chemo treatments.  The following year I was diagnosed with stage 2 colon cancer and had a hemicolectomy.  All was well until

May of this year when a nodule was seen in my left lower lung.  I had surgery in June and the pathology results showed endometrial cancer metastasis.

My gyn oncologist offered chemo but said there was no guarantee it would be of any help.  I chose not to.  Yesterday I had another CT scan and will

see him to discuss the results next week.  Fingers crossed. 

  I am disappointed that the cancer has returned but hope for the best.  As it is, I am dealing with bowel issues from previous radiation.

I'm so sorry to hear this,

I'm so sorry to hear this, Beaner54. It must be difficult, but I hope you stay strong and fight this.

I don't think chemo is ever guaranteed to help, but if it's a chance, I'm willing to take it. Are you considering other alternative treatments? I was looking at some of the history of this forum, and there were a few people who chose the alternative road that looked to be doing well. Was your last chemo treatment (the first time) difficult on you and is that why you decided not to pursue this course?

Will pray for you and yoru upcoming results!
Rebecca

rcdeman

Beaner54 said:

me again

I am 61yo, live in NY, have 2 children and 4 grandchildren.

My mom is 65 with 3 children

My mom is 65 with 3 children and no grandchildren. I feel guilty we haven't given her any grandchildren yet. You must be so happy to have some grandchildren to play with.

Kvdyson

Beaner54 said:

I am new to this site.  I was

I am new to this site.  I was diagnosed with 3C endometrial cancer in 2011; had 3 chemo treatments, 28 external radiation treatments, 2 internal radiation

treatments, then 3 more chemo treatments.  The following year I was diagnosed with stage 2 colon cancer and had a hemicolectomy.  All was well until

May of this year when a nodule was seen in my left lower lung.  I had surgery in June and the pathology results showed endometrial cancer metastasis.

My gyn oncologist offered chemo but said there was no guarantee it would be of any help.  I chose not to.  Yesterday I had another CT scan and will

see him to discuss the results next week.  Fingers crossed. 

  I am disappointed that the cancer has returned but hope for the best.  As it is, I am dealing with bowel issues from previous radiation.

Have you been tested for Lynch Syndrome?

Beaner54, I too am so sorry that you've had to join our group but glad that you found us. Hopefully we can be of some help to you. Have you been tested for Lynch Syndrome? My understanding is that those experiencing both endometrial and colon cancer have an increased chance of having it. There also seem to be very targeted therapies for anyone with LS. Fingers-crossed that your CT results show NED. Wishing you strength and hope, Kim

Lou Ann M

Beaner54 said:

I am new to this site.  I was

I am new to this site.  I was diagnosed with 3C endometrial cancer in 2011; had 3 chemo treatments, 28 external radiation treatments, 2 internal radiation

treatments, then 3 more chemo treatments.  The following year I was diagnosed with stage 2 colon cancer and had a hemicolectomy.  All was well until

May of this year when a nodule was seen in my left lower lung.  I had surgery in June and the pathology results showed endometrial cancer metastasis.

My gyn oncologist offered chemo but said there was no guarantee it would be of any help.  I chose not to.  Yesterday I had another CT scan and will

see him to discuss the results next week.  Fingers crossed. 

  I am disappointed that the cancer has returned but hope for the best.  As it is, I am dealing with bowel issues from previous radiation.

So sorry

So sorry you had to join  this club, but also glad you found us.  This is a great place to come to for support, encouragement and advice.  No questions are off limits and most likely someone will have amswers or advice for you.  Never give up hope.

Hugs and prayers, Lou Ann

rcdeman

Update 09/18/16

Update on my mom. Anyone here have or had this problem after hysterectomy? What should we do?

My mom was leaking what she believes to be urine today. It's like a uncontrollable stream, something she isn't able to control, and it seems to be continuous. I think she was quite frightened in her inability to control this. She's been having lower abdominal/pelvic pains when she gets up or moves around for the past several days. I've expressed concern over this since she didn't have this pain until weeks after her hysterectomy. It is now Day 18 after her hysterectomy, and it seems things are getting worse, not better.

I called the doctor's office, but since it was late on a Saturday, I was only able to get some random doctor who does not know of her condition. I told him that she was diagnosed with UPSC Stage IIIC, had a hysterectomy 18 days ago, and now she's leaking urine without being able to control it. He told me it was most likely lymphatic fluid that's leaking and told me to call her normal ob/gyn on Monday. He said going to the ER at this point wouldn't really help her or fix the problem. (In other words, he was quite unable to answer my questions.)

I'm very concerned. Has anyone had or heard of this problem weeks after hysterectomy? And waiting until Monday to call seems to be insupportable and quite frustrating.

Editgrl

rcdeman said:

Update 09/18/16

Update on my mom. Anyone here have or had this problem after hysterectomy? What should we do?

My mom was leaking what she believes to be urine today. It's like a uncontrollable stream, something she isn't able to control, and it seems to be continuous. I think she was quite frightened in her inability to control this. She's been having lower abdominal/pelvic pains when she gets up or moves around for the past several days. I've expressed concern over this since she didn't have this pain until weeks after her hysterectomy. It is now Day 18 after her hysterectomy, and it seems things are getting worse, not better.

I called the doctor's office, but since it was late on a Saturday, I was only able to get some random doctor who does not know of her condition. I told him that she was diagnosed with UPSC Stage IIIC, had a hysterectomy 18 days ago, and now she's leaking urine without being able to control it. He told me it was most likely lymphatic fluid that's leaking and told me to call her normal ob/gyn on Monday. He said going to the ER at this point wouldn't really help her or fix the problem. (In other words, he was quite unable to answer my questions.)

I'm very concerned. Has anyone had or heard of this problem weeks after hysterectomy? And waiting until Monday to call seems to be insupportable and quite frustrating.

I have heard of this...

Can she tell if she is leaking from her vagina or her urethra? I have heard of women having this problem and it does sometimes begin weeks after hysterectomy.  It is very possible that it is lymphatic fluid, but there is a small chance that it could be something more serious. Is she in any pain?  Is the leakage clear or tinged with blood?

rcdeman

Editgrl said:

I have heard of this...

Can she tell if she is leaking from her vagina or her urethra? I have heard of women having this problem and it does sometimes begin weeks after hysterectomy.  It is very possible that it is lymphatic fluid, but there is a small chance that it could be something more serious. Is she in any pain?  Is the leakage clear or tinged with blood?

Hi Chris, I'm not sure

Hi Chris, I'm not sure whether it's from her vagina or her urethra, but the fluid is tinged yellow and aside from one time where it was just a slight tinge of brown red, the rest was just clear yellow.

Editgrl

Sorry

I missed where you said she is experiencing abdominal pain. (still waking up)  I also follow the Hystersister cancer board, and there were some women over there that had leakage issues after their hysterectomies for various reasons.  So, it's not that uncommon, but it definitely warrants a call to your doctor tomorrow.

beccabtown

I was also going to recommend

I was also going to recommend the HysterSister.com site. It was very helpful to me while recovering from surgery. 

rcdeman

Thanks, I will check out the

Thanks, I will check out the forums on Hystersisters. Either way, I will call the doctor tomorrow and will get back to you guys.

Thanks,
Rebecca

beccabtown

rcdeman said:

Thanks, I will check out the

Thanks, I will check out the forums on Hystersisters. Either way, I will call the doctor tomorrow and will get back to you guys.

Thanks,
Rebecca

Sorry, you're right: it's

Sorry, you're right: it's HysterSisters.com .

 

daylady

One Day at a time!

Rebecca,  I am much like your Mom.  I was 64 when diagnosed with UPSC, Stage IV.  I had surgery, radiation (not bad), and chemo and initially was NED but had a recurrence within 6 mo.  I reached NED again, but my most recent scan showed a spot on my liver which could be something, or could be nothing, but because of it's location a biopsy is too dangerous.  They decided to treat it anyway.  So I'm going thru chemo again.  I am currently three years post diagnosis and for most of this time, even though going through treatment, I have been able to do what I typically do.  I have enjoyed life, took my kids to Hawaii with us earlier this year, do volunteer work, see friends and pretty much am dedicated to just living each day well.  I am currently on Topotecan (infusions once a week for three weeks, fourth week off) and during the off week my husband and I travel.   Cancer is not necessarily a death sentence.  Very often it becomes a condition that just gets managed.  I strongly recommend you get yourself and your Mom a copy of "Radical Remission" by Kelly Turner, PhD.  She also provides a monthly newsletter with survivor stories and tips.  It was probably the most inspirational book I have ever read (and reread and reread!) and made me so aware that there is soooooo much you can do on your own behalf.  Many of the women on this board have counseled you to just take in one day at a time and breathe.  They are right.  Before you know it, you will be surprised at the number of days you have gotten through.  Take good care of you, Hugs! - Helen

 

rcdeman

daylady said:

One Day at a time!

Rebecca,  I am much like your Mom.  I was 64 when diagnosed with UPSC, Stage IV.  I had surgery, radiation (not bad), and chemo and initially was NED but had a recurrence within 6 mo.  I reached NED again, but my most recent scan showed a spot on my liver which could be something, or could be nothing, but because of it's location a biopsy is too dangerous.  They decided to treat it anyway.  So I'm going thru chemo again.  I am currently three years post diagnosis and for most of this time, even though going through treatment, I have been able to do what I typically do.  I have enjoyed life, took my kids to Hawaii with us earlier this year, do volunteer work, see friends and pretty much am dedicated to just living each day well.  I am currently on Topotecan (infusions once a week for three weeks, fourth week off) and during the off week my husband and I travel.   Cancer is not necessarily a death sentence.  Very often it becomes a condition that just gets managed.  I strongly recommend you get yourself and your Mom a copy of "Radical Remission" by Kelly Turner, PhD.  She also provides a monthly newsletter with survivor stories and tips.  It was probably the most inspirational book I have ever read (and reread and reread!) and made me so aware that there is soooooo much you can do on your own behalf.  Many of the women on this board have counseled you to just take in one day at a time and breathe.  They are right.  Before you know it, you will be surprised at the number of days you have gotten through.  Take good care of you, Hugs! - Helen

 

Thanks Helen!

Thank you so much for your story and encouraging words, Helen. You're right, your situation is very much like my mom's, and I will try to take heart because you seem to be happily thriving and living well. I deeply appreciate your positive attitude. All we can do is try to take this one day at a time.

At the moment, we are still waiting for her to heal up from her hysterectomy before we can do a PET/CT to determine what our next step is. Right now she's feeling a bit better, and good news is that she stopped leaking (lasted about 4 hours on Saturday). I called the doctor's office and the nurse told us to call back again if the leaking happens again. So far, it was just that one instance, so I'm praying it's not anything serious.

Meanwhile, I will definitely check out that book you've recommended.

Thank you so much! I will keep you all updated.
Rebecca

rcdeman

UPDATE 09/23/16

Hi, just wanted to give an update after our appointment with the medical oncologist and the radiation oncologist today.

So our medical oncologist is leaning towards something like the sandwich treatment, but he will be continuing a lower dose of chemo during radiation as well. So it will be something like an unspecified number of rounds of high dose chemo followed by lower dose of chemo in concurrence with 5 weeks of external radiation followed by 4 brachytherapy sessions and then finally followed by more chemo.

I think this treatment is the same or very similar to DSNYC's. I wonder if this is an updated/modified "sandwich" method of treatment? Has anyone heard of this and has there been research regarding this? I can't seem to find anything about it online.

Either way, this is only the tentative treatment because my mom has yet to do her PET/CT scan, which is this coming Monday. Please continue to pray that her PET/CT scans will show no metastasis or else she might have to go back into surgery which will delay chemo and radiation.

Will keep you all updated when she gets her PET/CT results. Thanks for everyone's support so far.

Love,
Rebecca

Kvdyson

rcdeman said:

UPDATE 09/23/16

Hi, just wanted to give an update after our appointment with the medical oncologist and the radiation oncologist today.

So our medical oncologist is leaning towards something like the sandwich treatment, but he will be continuing a lower dose of chemo during radiation as well. So it will be something like an unspecified number of rounds of high dose chemo followed by lower dose of chemo in concurrence with 5 weeks of external radiation followed by 4 brachytherapy sessions and then finally followed by more chemo.

I think this treatment is the same or very similar to DSNYC's. I wonder if this is an updated/modified "sandwich" method of treatment? Has anyone heard of this and has there been research regarding this? I can't seem to find anything about it online.

Either way, this is only the tentative treatment because my mom has yet to do her PET/CT scan, which is this coming Monday. Please continue to pray that her PET/CT scans will show no metastasis or else she might have to go back into surgery which will delay chemo and radiation.

Will keep you all updated when she gets her PET/CT results. Thanks for everyone's support so far.

Love,
Rebecca

Sending prayers for you and your Mom

Rebecca, sending prayers for you and your Mom. Please let us know how it goes. Kim

EZLiving66

I'm sorry I don't have any

I'm sorry I don't have any advice, Rebecca.  I felt fine after my hysterectomy from the day I danced out of the hospital.  That was, by far, the easiest part of this cancer journey.  It sounds like your mother's doctor is giving her options.  When you talk to her doctor, I would ask the reasoning behind each one so you can make an informed decision.  

Love,

Eldri

MAbound

Not sure

I'm not sure I can offer any advice at this point for you because I've never even heard of hypermetabolic fluid until now. I'm hoping you have confidence in your mom's doctor's reccommendations because they probably have the best idea of what they need to do to pin down what's going on with your mom so that they can say what the best course of action is. It could be that getting the chemo/and or radiation started would resolve a lot of what's going on. 

As far as her post-op aches and pains goes, some of that may be from the inevitible adhesions forming inside from the surgery as well as the fluid that showed up on the CT. Take a breath and don't visualize it as being something scarrier than that....it's tempting to do, but not going to help either of you to think like that while the doctors are trying to get a handle on thiings. One step at a time. 

Kudos to both you and your mom for how you are hanging in there and doing what needs to be done! It's a lot to cope with, but remember some of it is behind her already with the surgery she's had so far. One step at a time and you'll both get through this.