Pure Terror just need to let it out

medo
medo Member Posts: 2
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
«1

Comments

  • txtrisha55
    txtrisha55 Member Posts: 693
    That is why this board is here.
    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
  • Ro10
    Ro10 Member Posts: 1,561
    So sorry to hear your news.
    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
    ConnieSW Member Posts: 1,613 Member
    Ro10 said:

    So sorry to hear your news.
    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.

    Ro has said it so well.
    Ro has said it so well. Please take her words to heart. Can you see a dr soon?
  • jazzy1
    jazzy1 Member Posts: 1,379
    ConnieSW said:

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

    Feel your pain
    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
  • Michaelynn
    Michaelynn Member Posts: 83 Member
    Bleeding after sex
    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
    janh_in_ontario Member Posts: 150 Member
    Panic is normal
    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
    NJZ62 Member Posts: 32

    Panic is normal
    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

    Pure Terror - Panic is normal


    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!!!
  • janh_in_ontario
    janh_in_ontario Member Posts: 150 Member
    Ro10 said:

    So sorry to hear your news.
    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.

    Thank you
    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
  • lovemycat
    lovemycat Member Posts: 43
    pure terror
    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
  • norma2
    norma2 Member Posts: 479

    Panic is normal
    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

    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"

    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
    janh_in_ontario Member Posts: 150 Member
    norma2 said:

    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"

    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.

    lol
    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
  • seaturtle
    seaturtle Member Posts: 41
    lovemycat said:

    pure terror
    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

    Terror
    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
    RoseyR Member Posts: 471

    That is why this board is here.
    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

    Trisha - Just a Note

    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
  • RoseyR
    RoseyR Member Posts: 471
    So Feel for You!

    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
    minniejan Member Posts: 88
    same situation and terrified, additional symptom of weight gain
    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
    daisy366 Member Posts: 1,458 Member
    minniejan said:

    same situation and terrified, additional symptom of weight gain
    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

    Jan
    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
  • daisy366
    daisy366 Member Posts: 1,458 Member
    minniejan said:

    same situation and terrified, additional symptom of weight gain
    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

    Jan
    double
  • minniejan
    minniejan Member Posts: 88
    daisy366 said:

    Jan
    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

    no news yet
    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
    Pat51 Member Posts: 130
    minniejan said:

    no news yet
    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

    Minnie Jan - Will be thinking of you
    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
    cheerful Member Posts: 261 Member
    minniejan said:

    no news yet
    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

    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