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Pure Terror just need to let it out

medo
Posts: 2
Joined: Oct 2010

Hi its been a long time since I have been here. My surgery was just a little over 2 years ago. Did the chemo and radiation for uspc and then after i lost my medical coverage I stopped going to the Drs. Last week after relations with my husband I found blood. Well this moring it happened again and now I am in a panic. My heart is racing and i am holding back the tears because I dont want to tell him and I dont want to go through all of it all over again. I dont want to be bald I dont want to b sick I dont want someone peering into me I dont want to die I I I I am AFRIAD . They told me that I would know it was back if I had bleeding well ok i guess it is what it is. Im sorry just had to see it im print just had to let it out. Thsnk all for listening

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

Come to vent, share your fears, just to find someone to talk with and let it all out with other ladies that know your fears and can share the tears. I have the other grade 3 Uterine cancer carsonma sarcoma stage 3C1 from April 2011. I pray for you that it is not cancer and that it could be something else and will pray for strength to help you get through this. Just know that the ladies on this board are here for you. trisha

RoseyR
Posts: 464
Joined: Feb 2011

Just wanted to ask if we could stay in touch as I share your diagnosis (uterine carcinosarcoma) and am so happy to see you're still doing well a year and a half after diagnosis.

If you send me a message via CSN email, upper left, I'll be happy to give you my regular email address.

I am feeling great two years after diagnosis and a year after finishing treatment. Of course I have sen an integrative doctor here as well as a fabulous naturopath in Colorado this summer (who had very interesting observations, by the way, about our tumor); would be happy to share if you you like.

Best,
Rosey

Ro10's picture
Ro10
Posts: 1419
Joined: Jan 2009

However sometimes after radiation the insides are more fragile and you might have bleeding after sex. I don't know how much bleeding you are having. I can understand your anxiety. I can understand you not wanting to be bald. I have been bald four times now. I can understand you not wanting to do chemo again. I have done it three times, and will probably have to do it a fourth time soon. I do not want to die either, so that's why I keep on doing the chemo. I never have had symptoms when my cancer returns. You need to have it checked out even though you fear the worst. Until you have answers you will continue to worry. Even though we all worry , it really does not help us. When we get answers and a plan, we tend to worry less. Good luck to you. Come back and vent your fears anytime. We do understand how you feel. In peace and caring.

ConnieSW's picture
ConnieSW
Posts: 583
Joined: Jun 2012

Ro has said it so well. Please take her words to heart. Can you see a dr soon?

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

As much as we want to put our heads in the sand and continue our old "normal" life, it's just not the same. Sorry about your health insurance, as you're up there will a zillion others. I continually see my "individual" coverage go up and up, but know I MUST KEEP IT, even if have to scrape money from other expenditures.

While I'm 3 years NED, I had some vaginal spot bleeding at the 2 yr NED mark. I was horrified and just knew the cancer was back. Instantly called my doc for physical, and in mean time the spotting had stopped. Doc asked me lots of questions and told me possibly scar tissue letting loose from the surgery 2 years prior, or intercourse causing sensitivity to lining of walls of vagina or side affect from my pelvic radiation.

Conclusion -- nothing was found and today have no more bleeding/spotting. I know this is a jolt to you, but try and think yes it could be nothing, just the bodies way of dealing with something quite minor, as in my case.

Plse keep us posted on your outcome and get to the doctor ASAP. I agree with another poster, that's what the boards are here for...unload on us, we're all in this together.

Best to you,
Jan

janh_in_ontario
Posts: 110
Joined: Sep 2010

I was trying to decide whether I should keep my appt I had made with my family doctor today. I just have this niggling feeling that I shouldn't wait for symptoms to appear. I had made an appt to get him to write up an order for CA125 test (we have to pay for that here in Canada) and also a follow up ultrasound. The devil on my shoulder was telling me I am being paranoid as I have no symptoms. Then I read your response here and it was affirmation that I needed to take care of it.
So off I went... we'll see what the results are - hopefully everything is fine - but I would rather know.
Thanks Ro

Jan

Michaelynn
Posts: 68
Joined: Apr 2010

My doctor told me you can expect some bleeding after sex since the lining of the vagina is quite dry and easily irritated. He said if the bleeding is pink in color than thats ok but if it is bright red then I need to come in for a check up. From what I understand cancer returning at the point of origin (in this case the vaginal cuff) is one of the most curable re-occurrences.

janh_in_ontario
Posts: 110
Joined: Sep 2010

I totally know what you are feeling. But I had the bleeding a few times now and each time it ends up being "scar tissue" or whatever - but not cancer.
Either way you need to face it and deal with whatever it is. I think the not knowing is 100% worse than the truth.
The first thing the Dr asked me each time I went about the bleeding was did we have sex. Unfortunately my answer was no... it wouldnt be so bad if the bleeding was after a mind-numbing orgasm. LOL
Take a deep breath, call the dr and make an appointment and face it head on. Deal with the results and you absolutely SHOULD come here and vent, scream, cry, pray - whatever you need. there is no one else who knows better what you are feeling than this group of ladies.
Hugs
Jan

NJZ62
Posts: 32
Joined: Sep 2012

To Medo -
I think terror/panic is an absolutely normal response to your fears - who would ever want to think their cancer has come back?

But I also agree with the other ladies - not knowing for sure what's happening is the worst. I've gotten some bleeding just from using that damned dilator - better to face your fears - could hardly be worse than blind panic.

Bless you & please keep communicating with the network.

To Jan -

>>>>>>>The first thing the Dr asked me each time I went about the bleeding was did we have sex. Unfortunately my answer was no... it wouldnt be so bad if the bleeding was after a mind-numbing orgasm. LOL

God Bless you, Jan - one of the few laughs I had today!!!

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

"The first thing the Dr asked me each time I went about the bleeding was did we have sex. Unfortunately my answer was no... it wouldnt be so bad if the bleeding was after a mind-numbing orgasm. LOL"

Reading this early in the morning I just about spit my coffee out laughing!!! Thanks for the laugh, Jan.

To the original discussion:
It is terribly scary to think of a recurrence. I think RO had some good ideas and so did the others who responded. If it is any comfort I think all of us have had some experience with fear of recurrence. For me getting it checked out helps. I always feel better when I think that things are being handled. I hope this is nothing and you find out that your fears were in vain. It seems like there are many options if there is a recurrence. We are here for you. You are not alone.

janh_in_ontario
Posts: 110
Joined: Sep 2010

I first had to figure out the "relations with my husband" line... God isn't that sad?
Glad i made you laugh - we need that every single day... of course we also need the mind numbing orgasm - but one out of two aint bad.
Jan

lovemycat
Posts: 43
Joined: Aug 2012

Hi Medo - The ladies are right you need to get to your Doctor as soon as possible. I'll be praying for you that isn't a return and that it is going to be alright.
Helen

seaturtle
Posts: 41
Joined: Aug 2012

Of course you are terrified. Do continue to talk about it here. It has helped me to do so.

I am scared too: I just had a call from the oncologist at Dartmouth who found something else suspicious. Have to go back there to see her. I thought I was out of the woods.

For me, the only way to lessen the terror is to find out exactly what the facts are. The I can begin to act.

I hope you go to the doctor soon and I will be watching for your posts.

Hang in there.

RoseyR
Posts: 464
Joined: Feb 2011

We all understand the awful feeling we get when we feel any sign of possible recurrence. Of course you are scared; of course you are downhearted. This is only natural; try to be good to yourself, pamper yourself, until you get definitive news of what has happened.

In the meantime, try to hold on to this encouragement: some women actually have longer remissions after their second course of treatment than they did after their first one.

It's vital, if this is a recurrence, to get the best chemo regimen possible. Perhaps you were resistant to the first one and that's why you may be having a recurrence. Demand a chemo assay--send your tissue to a European clinic that will determine what chemo regimen will WORK against the tissue. (See Suzanne Somers' book Knockout for how to get a good chemo assay.)

Love,
Rosey

minniejan
Posts: 88
Joined: Dec 2010

I just woke up this morning, Sunday, and found blood, more than I ever had leading to my first diagnosis. I am at my son's home 2000 miles away from home visiting him. He is still sleeping and I do not want to bother him so for some reason I was drawn to this site and saw your post. I occasionally come on this site and lurk but everything has been going beautifully for the last year and I had nothing new to add until today.

I was diagnosed with UPSC and had surgery 12/10. I was stage 1A. Chemo and brachytherapy and everything has been fine. On Thursday I had my normal three month oncology checkup, a pap and CA125. I didn't bleed after the pap and haven't been bleeding using the dilator for a long time, so I am also absolutely terrified right now. I had one symptom which I shared with both the doctor and nurse on Thursday, that I had put 7 pounds on in three weeks and it was all in my abdomen. My pants were fitting differently. The doctor thought it was from my thyroid cancer diagnosis (which I had taken out about a year after the diagnosis for the uterine cancer, completely different type of cancer) and he thought my levels of synthroid must be off causing the weight gain.

Question: Did anyone have rapid weight gain in the lower abdomen prior to being found to have a re-occurrence?

MinnieJan

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

double

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I feel horrible for you dealing with this stress.

Bloating feeling may be an indicator of problems. I just remember that I had bloating (not sure about weight gain) and my pants felt tighter before I ended up in ER with horrible pain.

I suggest you call your doctor Monday and update on this situation and get guidance. Will you see your endocrinologist soon?

Keep us posted here. Mary Ann

minniejan
Posts: 88
Joined: Dec 2010

Hello,

I have a call into my gyn oncologist and my endocrinologist as well. With the three hour time difference I am still hoping to hear back today. I am planning to at least get a TSH test done soon out here to see where that is and if it is relative to all of this or not. I am sure I will be told to wait for the results of the CA125 and the pap and that we will proceed from there.

Thanks, MinnieJan

Pat51
Posts: 111
Joined: Feb 2011

I was diagnosed with UPSC shortly after you (Stage 1B). I am sorry to hear that you are having problems. I can truly understand how scared and anxious you must be. I just wanted you to know that I am thinking of you and will be saying a prayer for you.

Pat

cheerful
Posts: 122
Joined: Apr 2011

Hi Minniejan:

I will keep you in my prayers that everything will turn okay for you. I was diagnosed with Stage 1 of UPSC in February of 2011. I live in the suburbs outside of Phila., PA

I went through 6 rounds of chemo and 3 rounds of radiation. With UPSC it is a very scary diagnosis. I just take it day by day and enjoy each and every day that I have and enjoy the now.

Do keep us ladies posted. I know you must be very scared and nervous. Good luck.

Cheerful

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

I know that you have to be worried. I just went for another 3 month check up. CS125 was 11, lowest ever but she (the gyn onc dr) wants me to do another ct scan because the June ct scan said 1 lymph node was borderline in size. She said she could not feel anything but wants to make sure. I hate drinking that berry flavored chalk before the ct scan. But I have it already set up for Oct 26. It is scary waiting. I will be praying for a simple explination of why you are having bleeding. trish

ConnieSW's picture
ConnieSW
Posts: 583
Joined: Jun 2012

Trisha, have you tried the banana flavored? It wasn't so bad. I used a straw- goes down faster and I don't think you taste it as much. I was maxed out on all that broth though. Still, I could handle it better than the gatoraide

Pat51
Posts: 111
Joined: Feb 2011

Have you asked at your scan center about mixing the contrast with crystal light. The scan centers that I have gone to and the also the ones my husband goes to, mix the contrast with crystal light lemonade. We have to drink two glasses of the crystal light but it is not bad tasting like the chalk....very easy to get down.

Pat

minniejan
Posts: 88
Joined: Dec 2010

Thanks for all the positive comments and understanding. I came to the right place without a doubt.

Update: According to my oncologist it appears that the bleeding is caused by acute inflammation which I have had since the brachytherapy and chemo ended about 18 months ago. The latest CA125 was under 7, which is the lowest it has ever been, and the pap came back with NO pre-cancerous cells, NO cancerous cells, no infection but definitely acute inflammation. Each pap for the last 18 months has come back with acute inflammation but this is the first time I have had such bleeding. It was very disconcerting having so much blood knowing there is no uterus, ovaries, etc. ! I will go for a CT scan in January, one year from the last scan. They said insurance would not cover one until then because all the tests came back normal. The bleeding has stopped, but if it starts up again I may go for a second opinion. I am still gaining weight and the lower abdomen is still the same, so the next step is for the TSH and other tests to determine if it is related to the lack of thyroid from the thyroid cancer. I will have those done on November 1 after returning home because they want them done at the same lab. Apparently different labs do these tests differently, especially the cancer marker test for thyroid.

I have to say, being so far from home it was difficult, but the oncologist's office at home and nurses were wonderful, keeping me posted on the tests and everything. That did help tremendously.

ConnieSW's picture
ConnieSW
Posts: 583
Joined: Jun 2012

Although you don't have all the answers yet, sounds like your worst fears aren't happening. So relieved for you and hope everything else goes well.

Goldamillie
Posts: 26
Joined: Oct 2012

well, I am so happy you didn't tell these frightened ladies to go to the "emotional support" discussion board and tell them "cancer is cancer" - what a thing to say for UPSC.

You need to take deep breath before you lash out for whatever reason - 1st impression - this is the real you.

I do forgive you for this horrible faux pas. Here's a copy in case you forgot:

Golda, I wonder if you
Golda, I wonder if you should also post under " emotional support". Cancer is cancer, so you might get helpful imput from more people as you make descisions. Just a thought. Stay strong

Connie

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