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Tomorrow....

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

I will have my appt with oncologist. Its gonna be a phone call due to corona... That’s gonna be a bit weird. ;)

I did check my portal. CA125 is 32. Scan report seems to be okay, but so many medical terms, so.... Just have to wait I guess  

When I had my blood drawn, I was feeling horrible, due to gastritis. And that is inflammation. So hoping that CA125 will continue to decrease... 

 

BluebirdOne's picture
BluebirdOne
Posts: 375
Joined: Jul 2018

Let us know how it went. 

Denise

oldbeauty
Posts: 303
Joined: May 2012

Please write down your questions for the doctor, for the best telemedicine experience.  And if there is a trusted "other" at home with you, you may wish to have them on the call with you to take notes.  Best wishes, Oldbeauty

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2878
Joined: Mar 2013

I agree with Oldbeauty on writing down questions.  Maybe list out all the medical terms and get those answered.  While I understand why their are doing telemedicine, and I used it myself for a foot infection in April, that was minor and a perfect example of it working, this is a little different.  Maybe even ask if there is a plan to get in-person visits back and when they might anticipate that?  Please let us know how it goes.

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

I guess it went okay. I’m kind of NED with a little but. There is an area of concern iny abdominal wall. Apparently not a big enough concern for them

yo worry about it. Unfortunately my own oncologist was off sick so I talked to someone else. I think I will call next week and hope she’s back again. Because right now - even though my next scan is in 3 months, I’m already now worrying sick about that scan. 

This is my first recurrence. Last time, there continued to be some remarks on my scans. So after chemo was done, I had a scan. Then I had another scan 6 weeks later. And another one 6 weeks later again. There continued to be some swollen nodes, but at that time, they thought I had gotten arthritis. And that can elevate CA125 that was 42 at the last scan. So my doc ended up saying. It’s probably the arthises that cause the enlarged nodes. Only it WAS NOT! It was cancer so 3 months later. CA125 at 160... :(

So.... I’m not convinced and I’m scared. 

CA125 is 32 now. I have gastritis that elevates CA125. It rose during chemo from 35 to 42 between chemo 5 and 6. But at that time, I was so miserable due to the gastritis. I lost 10 pounds in 8 weeks. 

So today I’m just so incredibly sad for the life I have now. :( Constant worry. Constant fear of dying from this. Im

really not doing so well today. Sorry. But I guess you can all relate. USPC sucks....!

Forherself's picture
Forherself
Posts: 503
Joined: Jan 2019

Please don't say sorry about worrying and being scared.   I wish you weren't but it is normal, and we understand.  USPC does suck.  And it is tricky.  I wish the doctors would not say they think it is nothing, until they know.  Did your nodes shrink?  It sounds like it from your post.  I hope your gatritis is a little better too.  As far as the worry, I have said quite a few times that this diagnosis can give you PTSD.  It causes anxiety.   And maybe you can read about it, and find a few ways to get away from that feeling.  I could not sleep in the same spot I recovered from surgery and worried about my pathology report.  I had to move to a new bedroom to sleep.  I recognized that my anxiety was worse in a certain place.  Sometimes it helps go go to a place you have never been, a walk, or a (hard to do right now with COVID). little bistro or park.  CA 125 can be a help.......or not.   It would be good to talk to your own oncologist, rather than someone new too.  I send wishes for a little relief from your worry.

Fridays Child
Posts: 204
Joined: Jul 2019

Flufff, I'm sorry you have this new worry and hope you will be able to talk to your own doctor soon.  Although mine is not UPSC, I do have a recurrence and know how the slightest change on a scan can be concerning.  Hope it will turn out to be nothing!

BluebirdOne's picture
BluebirdOne
Posts: 375
Joined: Jul 2018

This is a very tough time for you. The mental aspects of dealing with USPC or any stage 4 cancer are too overwhelming for the strongest of women. I remember when being dx and then surgery and staging, I was almost having an out of body experience mentally in order to cope, this was happening to someone else, I was not able to cope with any of it at the time. I was unconsolable. But time gives you the ability to absorb, to regroup, to process what is going on. Knowledge is power so talking to your normal oncologist will help. Just remember to be good to yourself, remember that this is the most difficult thing a body can go through, physcially and mentally. We are fighting for our lives. We are here for you and you can vent all you want, no matter, we have all been there, but we are here for you. 

 

Denise 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

The hardest part, I've found is controlling your thoughts. I found meditation useful at some points but has to be practiced. I also found getting some counseling very helpful. You don't have to do this alone. We all know how you feel and you're in our thoughts and prayers. 

BluebirdOne's picture
BluebirdOne
Posts: 375
Joined: Jul 2018

Denise 

MAbound
Posts: 1105
Joined: Jun 2016

Even if you had a solid "no worries" report, you'd still wouldn't be able to believe it because this is where you are right now, so I'm not going to tell you not to worry. That just isn't realistic. But I really like Denise's suggestion to be good to yourself while you are waiting for the next scan. Thinking about what being good to yourself is and acting on that can only help to distract you in a positive way. You deserve any respites that you can give yourself between scans. Constant worry is a fact of life for you now, but you can relegate it to the background of your mind as you go about reclaiming your life. Don't let cancer take any more from you than it already has. Sometimes you have to consciously choose to be happy and work at it. It's worth the effort.

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

with tears in my eyes. I know I have to snap out of this state I’m in right now. All you have written, is true. And I promise I will try my best and hardest to cope and live my life. It’s just that when you have experienced a recurrence once, it just changes EVERYTHING... :(

Yesterday really sucked. Today I will make a conscious choice to make this day a better day. 

Gastritis is better but not gone. Amazibg that it takes such a long time. It’s been going on for 3 months now. 

Shou the cancer be back after just 3 months, then what? Have anyone had this happen to them? I know I should leave it, but I guess knowing would give me some peace. 

BluebirdOne's picture
BluebirdOne
Posts: 375
Joined: Jul 2018

I think sometimes we just need to grieve. Grieve for ourselves, our old lives, our children and families and for a future we may not have. In the beginning of my dx and for about six months after, I was super depressed, unable to cope. I realized that I was trying too hard to do what everyone says you should do, "think positive! Smile! etc.  The happier "think positive" front I put on the more depressed I became. Unless you grieve, how can you accept what is happening to you, process and move on? I can only speak for myself, but I got very fed up with being positive, not being allowed by my family and friends to grieve, and feel the emotions. Everyone is afraid, but somehow the one with the disease needs to just smile, be happy and everything will be ok. To keep up the "super positive front" was exhausting, and made me afraid to deal with what was happening to me. Once I realized that I could not maintain that happy front I was able to deal with it, face the future and I was better able to handle it. We try to spare those around us, but in fact in the end it takes a bigger toll on you to not be totally honest about your prognosis and how you feel. This is my story, and I apologize if it is not relevent to you, but this is one terrible disease and I don't think anyone is fully prepared for what it does to us as we go through treatment and survival. As I said before, be good to yourself, but sometimes we just need to feel sad, feel loss, in order to continue on. 

xxoo

Denise 

ConnieSW
Posts: 1546
Joined: Jun 2012

You said it!  We should park this someplace as recommended reading  for all our new folks. 

BluebirdOne's picture
BluebirdOne
Posts: 375
Joined: Jul 2018

I appreciate your sentinments. The mental toll is so hard to talk about but so necessary. I am glad we have a safe space here to discuss these really important feelings. 

xxoo

Denise 

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

Fluff, when I was told I had UPSC 4 years ago(2016), my oncologist said this: the bad news is UPSC is ugly and wants to hang on; the good news is, we have lots of weapons in our arsenal to fight it. I had a recurrence in 2018 and another in 2019. Both times I had several options, none too rough and we put the beast to rest. I have had a pretty good 4 years enjoying my family and friends, perhaps just a tad more because time is not guaranteed. My doc is vigilant and I am checked with CT every 3 -4 months so the lesions are always found when tiny and the  weapon used to zap them is not too bad.  I agree that I would prefer not to have these popups, but look at all you have to be thankful for- family, living in a time with great treatments if not cures. Now I know my age makes it easier for me to say this, but my first battle was at 57 and I know where you are. But think about enjoying every day and know that worry never solved anything. Join a support group or form your own with friends - my seven ladies are called Mustangs and before this virus, we lunched once a month and cheered each other up! Now we zoom - imagine 7 eighty-something ladies trying to zoom. We end up laughing the blues away. Know you can share all your fears with this bunch of ladies - we have a lot of living between us and lots of love and wisdom. You are not alone.

oldbeauty
Posts: 303
Joined: May 2012

That is very good advice.  I know it's hard to do when your thoughts turn dark.  I have great empathy for your distress.  At the same time, I know, rationally, that worry and distress do no good.  So, you are smart to resolve to do life differently today, tomorrow, and until you have learned a better mental and physical routine.  There are many here who consistently respond, who are battle tested and wise in their advice.  For myself, Donna Faye, to name one, inspires me.  As discussed in the "Scanxiety" thread, Donna Faye's commitment to welcoming, and not dreading, scans was enlightening.  She sees them not as confirmation of certain doom, but as encouraging tools that allow her team to monitor the beast, track it, and beat it back.  The intervals are lived in the moment for all the joy that life offers, if you will come out and engage it.  No one can tell you not to have feelings; they are your feelings and should be heard and respected.  You get that here, if nowhere else.  It seems like you got some relatively good news.  Please allow yourself to enjoy it, for the interval you have until your next encounter with testing.  This is the fact of life for those of us in the recurrence club, living life to the fullest in the intervals.  I hope it is a lovely Spring day where you, and you have gone out amongst Nature and humanity (in a safe Covid" aware way) and been successful in getting out of your head and engaged in pleasure for pleasure's sake.  Now excuse me, I have birds to watch at the feeder in my back garden, a Sunday dinner to prepare for ourselves and a friend, and a bit of a tandem bicycle ride later with hubby and some garden tasks.  Pure pleasure is a perfect prescription.  Best wishes, Oldbeauty

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1745
Joined: Jun 2015

Fluff, you have received great advice from the ladies here. Just wanted to chime in my support and hope you can make peace with the beast. It is a journey no one would wish on anyone. 

We are here for you!

Love and Hugs,

Cindi

jan9wils's picture
jan9wils
Posts: 152
Joined: Mar 2017

Fluff, I do not have the same kind of cancer as you have. Mine is endometrial adenocarcinoma, the most common kind. But, for whatever reason, I have recurred four times in six years. Now it's just always there, sometimes growing and sometimes not. Your description of how you are currently feeling reflects my own feelings from time to time. So do Donna Faye's and Denise's. I often come to this board and read about other's experiences and to get support for how I am feeling. I tell myself from time to time what my mother (may she rest in peace) used to say to me when I would ask her how she's doing. She would say, well I woke up today so it's a good day. I wish you peace and comfort as you navigate through your journey with this disease.

Jan

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

Jan, I realize that is how I have become - just accept it is lurking there and may show up on the next scan and be troublesome. I have never had any symptoms so it is the scan that tells the tale. I have one this Friday and just accept it as what needs to be done.  But it is weird when one feels good and is going about life w/o any other indication except what the doctor thinks. My son-in-law is a radiologist so he oversees the scan and tells me what all the report means. By the time I talk to the onc , I have lots of questions and some ideas as to a plan.  I would prefer that it just go away, but don't think that will happen. The posts like yours and others keep me grounded. df

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