Uterine Papillary Serous Carcinoma (UPSC): any others here???

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  • deanna14
    deanna14 Member Posts: 732

    Thanksgiving was Great
    Linda, My hair started coming out in hand fulls on Saturday and yesterday. It's very, very thin and my head itches like crazy. I'm ready to take hair clippers and shave the rest off! I glad to hear you had some fun!!!! I'm waiting for my time. Go for Chemo again on Friday but see the doctor first. See what she has to say cause my six weeks of healing is Thursday.

    Deanna, Congratulations and may God Bless you with many, many, happy years of marriage.

    Thank you!
    The wedding was amazing! We really had a lot of fun and I am so happy.

    Linda, I'm glad you decided to go ahead with the sex thing. I think 8 weeks is pretty safe. We, on the other hand waited until this weekend (it has been 10 weeks), and it was uncomfortable. When I asked the nurse about it today, she said that was actually a sign that my body is already starting to heal from the radiation. The radiation can cause strictures. She said as long as there was no bleeding. Some women have to use dilators after radiation. I would prefer the natural method for dilation!

    Thursday will be my last external treatment, then I will have 3 internals, weekly starting next Wednesday.

    Marge, I hope all goes well with your chemo on Friday. I've heard that your head really itches when the hair starts coming out. I hope for you the itching lets up soon.

    Take care all, you are in my thoughts and prayers always,
    Deanna
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    A happy bride! Wonderful!
    I'm so glad that the wedding was all that you wanted it to be, Deanna! And so glad that your external radiation is just about over. Going there day after day never lets you forget that you have cancer. With the long breaks between the chemo treatments, there are actually times when you can forget for a little bit. Very restful.

    My head feels SORE. I washed it soooo gently tonight and am trying to hardly touch my head, hoping to get a few more days before it starts coming out in clumps. Right now I'm just shedding if I scratch my head, but I know this it's gonna start coming out BIG TIME by next Monday when I have my 2nd chemo treatment. I'm trying to not let it bother me. I'm pretty vain, but I'm trying not to be.

    Do any of you know anything about the lymph nodes that run down the inside of your thighs? I have some tender spots down the inside of my thighs that have me a tiny bit concerned. I wouldn't connect this at all with the cancer if the radiologist hadn't examined my legs with such care when I saw him, something I didn't think to ask why. Anyone know anything about these lymph nodes? I was going to wait until next Monday's chemo to ask my oncologist, but if anyone knows of any connection at all, I won't wait and will give him a call. Thanks!
  • deanna14
    deanna14 Member Posts: 732

    A happy bride! Wonderful!
    I'm so glad that the wedding was all that you wanted it to be, Deanna! And so glad that your external radiation is just about over. Going there day after day never lets you forget that you have cancer. With the long breaks between the chemo treatments, there are actually times when you can forget for a little bit. Very restful.

    My head feels SORE. I washed it soooo gently tonight and am trying to hardly touch my head, hoping to get a few more days before it starts coming out in clumps. Right now I'm just shedding if I scratch my head, but I know this it's gonna start coming out BIG TIME by next Monday when I have my 2nd chemo treatment. I'm trying to not let it bother me. I'm pretty vain, but I'm trying not to be.

    Do any of you know anything about the lymph nodes that run down the inside of your thighs? I have some tender spots down the inside of my thighs that have me a tiny bit concerned. I wouldn't connect this at all with the cancer if the radiologist hadn't examined my legs with such care when I saw him, something I didn't think to ask why. Anyone know anything about these lymph nodes? I was going to wait until next Monday's chemo to ask my oncologist, but if anyone knows of any connection at all, I won't wait and will give him a call. Thanks!

    Lymph
    Linda,
    I don't know if this helps, but I had/have some pain and tenderness in my right groin and thigh. I asked the doctor and his explanation was that the lymph system runs closely with the nerve pathway. Therefore, there was probably irritation to the nerves. He said it would heal in time. I have only had problems on the right sometime causing a strange sensation down into my thigh, almost as if part of the leg has gone to sleep (pins and needles). Doc told me that it is normal and he's had that complaint many times. He said it would heal in time, and mine does seem to be bothering me less frequently with less intensity.

    I'm sorry about your hair. Are you having the itching also? If you go to a website called heavenlyhats.com, you can give them your name and address, and they will send you a box of hats... free. I got one, there are a couple of really cute ones.

    Well, my friend, I'm off to bed. Take care, talk to you soon.
  • pjba11
    pjba11 Member Posts: 188
    deanna14 said:

    Lymph
    Linda,
    I don't know if this helps, but I had/have some pain and tenderness in my right groin and thigh. I asked the doctor and his explanation was that the lymph system runs closely with the nerve pathway. Therefore, there was probably irritation to the nerves. He said it would heal in time. I have only had problems on the right sometime causing a strange sensation down into my thigh, almost as if part of the leg has gone to sleep (pins and needles). Doc told me that it is normal and he's had that complaint many times. He said it would heal in time, and mine does seem to be bothering me less frequently with less intensity.

    I'm sorry about your hair. Are you having the itching also? If you go to a website called heavenlyhats.com, you can give them your name and address, and they will send you a box of hats... free. I got one, there are a couple of really cute ones.

    Well, my friend, I'm off to bed. Take care, talk to you soon.

    Hello all
    Happy MRS. to you Deanna. Congrats to you and your husband. Well Linda; Glad to see you are getting your normal life back and enjoying your relationship again. Your symptoms sound very normal to me. Your 'color' after your first time will probably be expected each time now. .... Especially after the brachy. You also said your head was sore, I remember mine feeling like I had a layer of crushed glass between my skin and my scalp. I had to use a donut pillow for a few days to sleep, but it went away. I had a nice soft cap to sleep in because my head got cold!! Also the lymp pain is still with me. Not nearly like it was just after my first hospital stay. Marge, you are still hanging tough. Hope your itching stops. This step of hair loss is not easy. We all want to think/act like it is nothing,,,, but for a day or so it may get very emotional for you and your husbands. I know I was angry that cancer had one more thing to control in my life. But soon hats and wigs are more fun than doing hair each day. Now when I have to do my hair each day I actually miss the convenience!! I am so glad all of you are here together for support. Have you noticed how different we all are/were and how much more the same we are now!?
  • deanna14
    deanna14 Member Posts: 732
    pjba11 said:

    Hello all
    Happy MRS. to you Deanna. Congrats to you and your husband. Well Linda; Glad to see you are getting your normal life back and enjoying your relationship again. Your symptoms sound very normal to me. Your 'color' after your first time will probably be expected each time now. .... Especially after the brachy. You also said your head was sore, I remember mine feeling like I had a layer of crushed glass between my skin and my scalp. I had to use a donut pillow for a few days to sleep, but it went away. I had a nice soft cap to sleep in because my head got cold!! Also the lymp pain is still with me. Not nearly like it was just after my first hospital stay. Marge, you are still hanging tough. Hope your itching stops. This step of hair loss is not easy. We all want to think/act like it is nothing,,,, but for a day or so it may get very emotional for you and your husbands. I know I was angry that cancer had one more thing to control in my life. But soon hats and wigs are more fun than doing hair each day. Now when I have to do my hair each day I actually miss the convenience!! I am so glad all of you are here together for support. Have you noticed how different we all are/were and how much more the same we are now!?

    Thanks Peggy
    I am (we are, I'm sure), so glad to have you here for support and guidance. It's so comforting to be able to hear that the things we are experiencing are expected. Also, that we do get normal life back (with some "metals") after treatment. Have any of you checked out cancercare.org? They have a lot of helpful information and offer free counseling and even online support groups. I am in the process of joining an online support group. They do screening prior to signing you up, I guess to make sure you are legit and maybe that they don't think you need more personal support.

    Peggy, I have a few question about the brachy. Is there a lot of discharge after these treatments? I have to douche for 3 days after each treatment? Then twice weekly until my first follow up visit with the radiation onc. Do you remember, is sex okay during these treatments. I hate being restricted... one of those cancer controlling my life things!

    Anyway, I want you all to know how much I appreciate having you to share with and bounce things off of. It has help reduce my anxiety about every little symptom so much. Thanks for being here.
  • pjba11
    pjba11 Member Posts: 188
    deanna14 said:

    Thanks Peggy
    I am (we are, I'm sure), so glad to have you here for support and guidance. It's so comforting to be able to hear that the things we are experiencing are expected. Also, that we do get normal life back (with some "metals") after treatment. Have any of you checked out cancercare.org? They have a lot of helpful information and offer free counseling and even online support groups. I am in the process of joining an online support group. They do screening prior to signing you up, I guess to make sure you are legit and maybe that they don't think you need more personal support.

    Peggy, I have a few question about the brachy. Is there a lot of discharge after these treatments? I have to douche for 3 days after each treatment? Then twice weekly until my first follow up visit with the radiation onc. Do you remember, is sex okay during these treatments. I hate being restricted... one of those cancer controlling my life things!

    Anyway, I want you all to know how much I appreciate having you to share with and bounce things off of. It has help reduce my anxiety about every little symptom so much. Thanks for being here.

    You are welcome!!
    I hope I can answer your questions about what I experienced with bachy. I did not have to douche. I did not have discharge. Through out all of my treatments I had sex when we wanted to. I had a mind set that I would be as normal as I could for what ever time we had left. When I went for my brachy simulation they had told me that I would have a marker in my vagina, and a enema of barium to better see the areas around all of my intestines and bladder. When they actually did the simulation they did not do either of these because they could see everything they needed to go around on the x rays. I never had to have any internal exams from any of my radiologists. Only my gynocologist. My brachy was interesting. My first time on the table just as the machine started to pump one of the techs came back into my room and said that they had just taken my husband from the waiting room and took him to emergency because they thought that he had had a stroke. I had to lay there listening to this machine pump this poison into me while my husband was going through this!! As soon as I was dressed I flew downstairs and found him sitting in bed drinking juice. It was not more than a bad virus that caused him to get dizzy and sick. Thank God!! As if this was not enough... the second time that I am on this same table for my 2nd brachy the tech comes in and asks me to call my daughter (9) at school (165 miles away at home) the tech went to my purse to get my cell phone... my little girl says 'mom, I think my arm is broke. I fell on the sidewalk by the school at recess. Can I get an x ray?' So I call my friend who I had asked to be in charge of my daughter to take her to the hosp. Next call from my daughter. "how is your arm." she said "the cast is blue" She had 4 casts total before we got through that fall!! On my third trip to brachy which is 165 miles from home I started to throw up about 20 minutes from the hospital. I had a terrible flu. Since I very very seldom get sick this was horrible!! So Deanna I hope you have better luck than I did!! The procedure itself is nothing to worry about. I felt pressure and pinching, mostly because I was so sore from the earlier radiation sessions. They will also give you dialators for later if you need them. We have the rest of our lives to deal with the damage. I felt that the chemo was a breeze compared to the after effects of radiation. But once again. We are all different. My life is good and I thank God many times a day for the privledge of my treatments!! You are much younger than I am and more than likely you will be able to bounce back a lot quicker. Nothing about my brachy was painful. Do not even give it a second thought. Just go get done and come home healthy!!!
  • shortmarge
    shortmarge Member Posts: 291
    pjba11 said:

    You are welcome!!
    I hope I can answer your questions about what I experienced with bachy. I did not have to douche. I did not have discharge. Through out all of my treatments I had sex when we wanted to. I had a mind set that I would be as normal as I could for what ever time we had left. When I went for my brachy simulation they had told me that I would have a marker in my vagina, and a enema of barium to better see the areas around all of my intestines and bladder. When they actually did the simulation they did not do either of these because they could see everything they needed to go around on the x rays. I never had to have any internal exams from any of my radiologists. Only my gynocologist. My brachy was interesting. My first time on the table just as the machine started to pump one of the techs came back into my room and said that they had just taken my husband from the waiting room and took him to emergency because they thought that he had had a stroke. I had to lay there listening to this machine pump this poison into me while my husband was going through this!! As soon as I was dressed I flew downstairs and found him sitting in bed drinking juice. It was not more than a bad virus that caused him to get dizzy and sick. Thank God!! As if this was not enough... the second time that I am on this same table for my 2nd brachy the tech comes in and asks me to call my daughter (9) at school (165 miles away at home) the tech went to my purse to get my cell phone... my little girl says 'mom, I think my arm is broke. I fell on the sidewalk by the school at recess. Can I get an x ray?' So I call my friend who I had asked to be in charge of my daughter to take her to the hosp. Next call from my daughter. "how is your arm." she said "the cast is blue" She had 4 casts total before we got through that fall!! On my third trip to brachy which is 165 miles from home I started to throw up about 20 minutes from the hospital. I had a terrible flu. Since I very very seldom get sick this was horrible!! So Deanna I hope you have better luck than I did!! The procedure itself is nothing to worry about. I felt pressure and pinching, mostly because I was so sore from the earlier radiation sessions. They will also give you dialators for later if you need them. We have the rest of our lives to deal with the damage. I felt that the chemo was a breeze compared to the after effects of radiation. But once again. We are all different. My life is good and I thank God many times a day for the privledge of my treatments!! You are much younger than I am and more than likely you will be able to bounce back a lot quicker. Nothing about my brachy was painful. Do not even give it a second thought. Just go get done and come home healthy!!!

    Brachy
    I went last week and saw the Radiation Oncology Dr. He actually recommends that you have sex at LEAST once a week. I waiting to hear from them but believe my first appointment will be next week.

    Dianna I'm sooooooooo happy for you. CONGRATS!!!!

    And Peggy, WOW...

    My hair is almost gone, think in about 2 days I will be completely bald. I put baby oil on my head this morning to help stop the itching and it is a little painful to touch.
  • wje630
    wje630 Member Posts: 11

    Thanks soooo much!
    Yours is the success story I have been trying so hard to find. I could HUG you! Was it the internal rads that left you needing to use the dilator? I may not have a choice, and I DO want to be aggressive, but I have always LOVED my sex life and so worry about all that with the radiation. My husband says he'd go without sex forever to have me live, but I'm not going to let that happen if I can help it. Does the radiation oncologist talk about that openly or do I need to ask about that possible side effect? I am Stage 3, so I think they'll be doing all the radiation and chemo my body can take. If I get any news tomorrow about my treatment calendar, I'll post here again when I get home.

    Using Dilators During Treatment
    Hi There:

    I am new to this forum and I was trying to do a search on anyone having problems from their pelvic area radiation and I came across your post.

    I was diagnosed with Anal cancer in February of 2005 after having a growth removed. My surgeon thought it was just some sort of polyp and I had thought it was just some kind of hemmorhoid? Anyway, when my surgeon called me and told me it was cancer, he was as surprised as I was.

    Although it was Stage II, the chemo radiologist thought I could forego the chemo and just do the radiation so that is what we did. I had 7 weeks, 5 days a week. They did the tatoos on both my back end and my pelvic front because he said that the lymph nodes are so close in that area. There is not much area betweem where the anal growth was and the wall of the vaginal area. I'm not using the exact medical terms of course, but hopefully you will get the idea. Because of radiation in the pelvic area, after about 3 weeks, I got really red and raw both in the front and the rear. They gave me creams to help, but truthfully they did not help much. I was also experiencing loose stools and so I was a pretty sore lady. They told me to just wear some men's boxers and loose clothing, like sweat pants.

    The reason I am telling you all of this is that my radiation onocologist did not prescribe for me the dilators to use during my treatment. I didn't realize how much difference there was in my vaginal opening until after I had healed from all the soreness. I was told it was scar tissue that had formed from the treatments. When I did mention that when my fiance and I tried to have sex, it was so painful I could hardly stand it. After a few months with no relief, I went to my gynocologist and she suggested surgery to remove the scar tissue. THAT was not a good idea...my radiation doctor said I should have waited until I was completly healed which would have been about 2 or more years. Oh well, the damage had been done by that time. My radiologtist had suggested I have sex several times a week or I could just use a dildo if I wanted. Unfortunately, it was still painful even after the surgery.

    I am using vaginal estrogen tablets and I just now bought a set of dilators I found at a site on the internet. Needless to say, it has been 3 years since I finished my treatments and all the CAT scans I have had since then have been clear. Although I am so grateful for
    that, I am still sad about how much my relationship has suffered because of the changes.

    You mentioned you wanted to head off any sort of problem, well if I had to do it all again(God forbid) I would use the dilators all during my treatment. It may be too painful at some point, but the idea is to keep your self pliable and not let it have a chance to grow any scar tissue. Hope this isn't too graphic or too much info, but I have been trying to find someone out there who could relate to my problem and let me know if eventually the dialators will work even after all this time.

    Good luck to you on your treatments, you are lucky to have your husband be so supportive.
  • deanna14
    deanna14 Member Posts: 732
    wje630 said:

    Using Dilators During Treatment
    Hi There:

    I am new to this forum and I was trying to do a search on anyone having problems from their pelvic area radiation and I came across your post.

    I was diagnosed with Anal cancer in February of 2005 after having a growth removed. My surgeon thought it was just some sort of polyp and I had thought it was just some kind of hemmorhoid? Anyway, when my surgeon called me and told me it was cancer, he was as surprised as I was.

    Although it was Stage II, the chemo radiologist thought I could forego the chemo and just do the radiation so that is what we did. I had 7 weeks, 5 days a week. They did the tatoos on both my back end and my pelvic front because he said that the lymph nodes are so close in that area. There is not much area betweem where the anal growth was and the wall of the vaginal area. I'm not using the exact medical terms of course, but hopefully you will get the idea. Because of radiation in the pelvic area, after about 3 weeks, I got really red and raw both in the front and the rear. They gave me creams to help, but truthfully they did not help much. I was also experiencing loose stools and so I was a pretty sore lady. They told me to just wear some men's boxers and loose clothing, like sweat pants.

    The reason I am telling you all of this is that my radiation onocologist did not prescribe for me the dilators to use during my treatment. I didn't realize how much difference there was in my vaginal opening until after I had healed from all the soreness. I was told it was scar tissue that had formed from the treatments. When I did mention that when my fiance and I tried to have sex, it was so painful I could hardly stand it. After a few months with no relief, I went to my gynocologist and she suggested surgery to remove the scar tissue. THAT was not a good idea...my radiation doctor said I should have waited until I was completly healed which would have been about 2 or more years. Oh well, the damage had been done by that time. My radiologtist had suggested I have sex several times a week or I could just use a dildo if I wanted. Unfortunately, it was still painful even after the surgery.

    I am using vaginal estrogen tablets and I just now bought a set of dilators I found at a site on the internet. Needless to say, it has been 3 years since I finished my treatments and all the CAT scans I have had since then have been clear. Although I am so grateful for
    that, I am still sad about how much my relationship has suffered because of the changes.

    You mentioned you wanted to head off any sort of problem, well if I had to do it all again(God forbid) I would use the dilators all during my treatment. It may be too painful at some point, but the idea is to keep your self pliable and not let it have a chance to grow any scar tissue. Hope this isn't too graphic or too much info, but I have been trying to find someone out there who could relate to my problem and let me know if eventually the dialators will work even after all this time.

    Good luck to you on your treatments, you are lucky to have your husband be so supportive.

    wje630
    Hi, you were actually replying to Linda's post, but my name is Deanna and I am also undergoing pelvic radiation. I had a hysterectomy in September and had not been active until this weekend after I got married. At first, it was very uncomfortable, but it seems to be a little better each time. Anyway, I just wanted to thank you for posting and sharing your experience. I am sorry for all the troubles you have had. Sharing your experience will help others, so thanks for being so open. I hope that things get better for you and your significant other. God bless and take care,
    Deanna
  • deanna14
    deanna14 Member Posts: 732

    Brachy
    I went last week and saw the Radiation Oncology Dr. He actually recommends that you have sex at LEAST once a week. I waiting to hear from them but believe my first appointment will be next week.

    Dianna I'm sooooooooo happy for you. CONGRATS!!!!

    And Peggy, WOW...

    My hair is almost gone, think in about 2 days I will be completely bald. I put baby oil on my head this morning to help stop the itching and it is a little painful to touch.

    Thanks
    Peggy,
    Thank you so much for sharing your experience with brachy. I think the reason we were restricted in the beginning was because the top of my vagina was not completely healed. The fear was that if we had sex the defect would become larger. Also that there was a chance of infection, which in turn would delay treatment. They were also worried that the radiation would further delay the healing of the vagina. Fortunately, it is healed, and has been for several weeks.
    Anyway, you have helped alleviate some of my anxiety and I thank you. I'm going to try to stop worrying so much! Thanks again.

    Marge,
    Thank you. I am really happy to be married to my best friend! My husband was happy when I told him that I read somewhere that sex was recommended 1-3 times per week, lol. I am so sorry that you are uncomfortable, I hope it passes soon. Hang in there, friend.

    Linda,
    I hope you are still hanging tough.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Thanks for sharing your experience with the pelvic radiation
    (This is supposed to be a reply to the new poster to this thread, but somehow it ended up at the bottom of the whole thing and she may never see it! What am I doing wrong? I will try and cut and paste it in again under her post, and apologize in advance if I get it in twice.) I am so sorry that you have had such a bad experience with your pelvic radiation....especially since it sounds like they gave you no direction as to how to best resume your sex life. How can doctors think this may not be important to you??! My surgeon called me in mid-November and suggested that I give him a call for an appointment "after you finish your chemo in March". When I said, "your instructions say that I am not to have intercourse until you examine me and give me the okay", he said "Oh,... okay, you can call for an appointment in early December". He would have just let me wait another 3 months when I had already waited 7 weeks because of my hysterectomy! I may be 55, but I'm not DEAD! HA! As it turns out, we didn't make it until the beginning of December anyway! But at least I have Deanna, Peggy, & Marge to get advice from here. Between the snippets we get from our various oncologists, we stay pretty well informed. I will be having pelvic radiation and internal bracy radiation after my chemo, and NO ONE at my oncologists have mentioned dilators or sex at all. But you can ask and get answers for almost anything on this message board. I fear the sexual side effects of the radiation more than I do anything from the chemo. Please join us here in this thread. We'll be there for you. HUGS.
  • deanna14
    deanna14 Member Posts: 732

    Thanks for sharing your experience with the pelvic radiation
    (This is supposed to be a reply to the new poster to this thread, but somehow it ended up at the bottom of the whole thing and she may never see it! What am I doing wrong? I will try and cut and paste it in again under her post, and apologize in advance if I get it in twice.) I am so sorry that you have had such a bad experience with your pelvic radiation....especially since it sounds like they gave you no direction as to how to best resume your sex life. How can doctors think this may not be important to you??! My surgeon called me in mid-November and suggested that I give him a call for an appointment "after you finish your chemo in March". When I said, "your instructions say that I am not to have intercourse until you examine me and give me the okay", he said "Oh,... okay, you can call for an appointment in early December". He would have just let me wait another 3 months when I had already waited 7 weeks because of my hysterectomy! I may be 55, but I'm not DEAD! HA! As it turns out, we didn't make it until the beginning of December anyway! But at least I have Deanna, Peggy, & Marge to get advice from here. Between the snippets we get from our various oncologists, we stay pretty well informed. I will be having pelvic radiation and internal bracy radiation after my chemo, and NO ONE at my oncologists have mentioned dilators or sex at all. But you can ask and get answers for almost anything on this message board. I fear the sexual side effects of the radiation more than I do anything from the chemo. Please join us here in this thread. We'll be there for you. HUGS.

    Hi Linda
    While we are on the subject, I think the sooner the better. It has been a little uncomfortable for me, but it had been 10 weeks since surgery. I had also had 4 weeks of external radiation. I agree with you, the doctors act like it's not important, when it IS so very important. I thank God that I found you all on this site, I would probably still be waiting if it weren't for talking with all of you. I am learning the true meaning of being your own advocate with the doctors.
    Anyway, how are you doing? I hope you are feeling well. Take care, stay strong!
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    wje630 said:

    Using Dilators During Treatment
    Hi There:

    I am new to this forum and I was trying to do a search on anyone having problems from their pelvic area radiation and I came across your post.

    I was diagnosed with Anal cancer in February of 2005 after having a growth removed. My surgeon thought it was just some sort of polyp and I had thought it was just some kind of hemmorhoid? Anyway, when my surgeon called me and told me it was cancer, he was as surprised as I was.

    Although it was Stage II, the chemo radiologist thought I could forego the chemo and just do the radiation so that is what we did. I had 7 weeks, 5 days a week. They did the tatoos on both my back end and my pelvic front because he said that the lymph nodes are so close in that area. There is not much area betweem where the anal growth was and the wall of the vaginal area. I'm not using the exact medical terms of course, but hopefully you will get the idea. Because of radiation in the pelvic area, after about 3 weeks, I got really red and raw both in the front and the rear. They gave me creams to help, but truthfully they did not help much. I was also experiencing loose stools and so I was a pretty sore lady. They told me to just wear some men's boxers and loose clothing, like sweat pants.

    The reason I am telling you all of this is that my radiation onocologist did not prescribe for me the dilators to use during my treatment. I didn't realize how much difference there was in my vaginal opening until after I had healed from all the soreness. I was told it was scar tissue that had formed from the treatments. When I did mention that when my fiance and I tried to have sex, it was so painful I could hardly stand it. After a few months with no relief, I went to my gynocologist and she suggested surgery to remove the scar tissue. THAT was not a good idea...my radiation doctor said I should have waited until I was completly healed which would have been about 2 or more years. Oh well, the damage had been done by that time. My radiologtist had suggested I have sex several times a week or I could just use a dildo if I wanted. Unfortunately, it was still painful even after the surgery.

    I am using vaginal estrogen tablets and I just now bought a set of dilators I found at a site on the internet. Needless to say, it has been 3 years since I finished my treatments and all the CAT scans I have had since then have been clear. Although I am so grateful for
    that, I am still sad about how much my relationship has suffered because of the changes.

    You mentioned you wanted to head off any sort of problem, well if I had to do it all again(God forbid) I would use the dilators all during my treatment. It may be too painful at some point, but the idea is to keep your self pliable and not let it have a chance to grow any scar tissue. Hope this isn't too graphic or too much info, but I have been trying to find someone out there who could relate to my problem and let me know if eventually the dialators will work even after all this time.

    Good luck to you on your treatments, you are lucky to have your husband be so supportive.

    Thanks for sharing your experience with pelvic radiation.
    (This is supposed to be a reply to the new poster to this thread, but somehow it ended up at the bottom of the whole thing and she may never see it! What am I doing wrong? I will try and cut and paste it in again under her post, and apologize in advance if I get it in twice.) I am so sorry that you have had such a bad experience with your pelvic radiation....especially since it sounds like they gave you no direction as to how to best resume your sex life. How can doctors think this may not be important to you??! My surgeon called me in mid-November and suggested that I give him a call for an appointment "after you finish your chemo in March". When I said, "your instructions say that I am not to have intercourse until you examine me and give me the okay", he said "Oh,... okay, you can call for an appointment in early December". He would have just let me wait another 3 months when I had already waited 7 weeks because of my hysterectomy! I may be 55, but I'm not DEAD! HA! As it turns out, we didn't make it until the beginning of December anyway! But at least I have Deanna, Peggy, & Marge to get advice from here. Between the snippets we get from our various oncologists, we stay pretty well informed. I will be having pelvic radiation and internal bracy radiation after my chemo, and NO ONE at my oncologists have mentioned dilators or sex at all. But you can ask and get answers for almost anything on this message board. I fear the sexual side effects of the radiation more than I do anything from the chemo. Please join us here in this thread. We'll be there for you. HUGS.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    deanna14 said:

    Hi Linda
    While we are on the subject, I think the sooner the better. It has been a little uncomfortable for me, but it had been 10 weeks since surgery. I had also had 4 weeks of external radiation. I agree with you, the doctors act like it's not important, when it IS so very important. I thank God that I found you all on this site, I would probably still be waiting if it weren't for talking with all of you. I am learning the true meaning of being your own advocate with the doctors.
    Anyway, how are you doing? I hope you are feeling well. Take care, stay strong!

    I'm doing really really good!
    If my hair wasn't falling out, I could almost forget I have cancer; I feel that good. My step-mother drove up to see me today and brought some great take-out Thai food from her favorite restaurant. After she left, I accepted an appointment tomorrow for lunch with a state official from the PA Dept. of Conservation & Natural Resources, to talk about a grant for one of my clients. (Let's hope he doesn't get too much of my drifting hairs in his food! HA!) Then I picked up my grandkids and took them to McDonald's and then let them play at my house awhile to give their parents a break. Then I put in a couple hours of computer work catching up with my staff. Deanna, the week before chemo is GREAT because your body has fully recovered from the last treatment by then. I think you'll like chemo a lot more than the radiation. But you don't make the radiation seem that scary either, and I thank you SO much for that! The grandkids helped me put my (artificial) Christmas tree up, and I've done all of my Christmas shopping already online, so I'm feeling unusually content. Who knew cancer could be like this?? I know there could be some bad days ahead, but don't you agree that this cancer thing is really do-able? Compared to how you imagined it would be when you got your diagnosis??
  • deanna14
    deanna14 Member Posts: 732

    I'm doing really really good!
    If my hair wasn't falling out, I could almost forget I have cancer; I feel that good. My step-mother drove up to see me today and brought some great take-out Thai food from her favorite restaurant. After she left, I accepted an appointment tomorrow for lunch with a state official from the PA Dept. of Conservation & Natural Resources, to talk about a grant for one of my clients. (Let's hope he doesn't get too much of my drifting hairs in his food! HA!) Then I picked up my grandkids and took them to McDonald's and then let them play at my house awhile to give their parents a break. Then I put in a couple hours of computer work catching up with my staff. Deanna, the week before chemo is GREAT because your body has fully recovered from the last treatment by then. I think you'll like chemo a lot more than the radiation. But you don't make the radiation seem that scary either, and I thank you SO much for that! The grandkids helped me put my (artificial) Christmas tree up, and I've done all of my Christmas shopping already online, so I'm feeling unusually content. Who knew cancer could be like this?? I know there could be some bad days ahead, but don't you agree that this cancer thing is really do-able? Compared to how you imagined it would be when you got your diagnosis??

    I'm glad you feel good.
    It really is do-able. You hear all of this horror stories and see horror stories in the movies and on TV. It is not what I imagined it would be, and yet it has made me appreciate life so much more! Radiation really isn't that bad. I have to watch what I eat, and I get tired easily, but it is so do-able. I planned a wedding and got married while taking radiation treatments!
    How are your grandchildren dealing with your hair falling out. We have a 3 year old granddaughter and I wonder how she will react to my bald head? Have you talked to them about the cancer and the treatment? Hannah did really well with the surgery and being careful about the "owie" on grandma's tummy. I'm just not sure how to explain cancer, chemo and hair loss to a 3 year old.
    I am happy that you are feeling well. We are all getting through this, and thank God we have each other :) !!
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Answering kiddies' questions in age appropriate way
    My grandkids are 6 and 7, and they overheard a lot of adult worried conversations and were warned not to jump on me, or cough on me, after my surgery. Initially the interruption in our usual daily close relationship and schedule was really a little scary for them. They are just old enough to know that cancer is a scary thing. At the very first, when I got out of the hospital, they shyed away from me. As soon as I was able I had them sleep over, and snuggled under the covers with them, I did my best to answer all of their questions. ("Are you trying not to die, Grammy?" Will you be able to see me from heaven?" "Did the devil give you cancer?" "Do little boys get cancer?" "Will my mommy get cancer?") I showed them my surgery staples, and later my scar. They both tried on my wig when I got it and all of my hats. Yesterday I let each of them gently pull my hair and come away with a little handful, and they joined me when I laughed. I think little kids follow your lead. If you can be lighthearted about it, so can they. Emily did ask me NOT to come to her school with my "Does-this-hat-make-my-head-look-bald?" baseball cap on; she wants me to wear the wig when I pick her up there. Now they both seem to spend more time snuggled up against me when they come over, comforting me and letting me comfort them. We have almost fallen back into our regular schedule of weekly sleep-overs and daily visits. My grandson and son both wear their hair "high and tight", military-short and are both very very blond, so Jakey always says "I am bald, too." I really think they will be okay about my bald head once they get used to it. Last night I slept with my 'sleeping hat' on so I wouldn't wake up to a hairy pillow. If I don't touch my head, my hair seems to hang on, so I think I can get through my appointment with the state official with no wig this afternoon (although I may wear a hat just to keep hair out of everyone's food! and also to get used to wearing a hat in public.) Then tomorrow I plan to go and get my hair cut off to about 1/2" all over, so it's not itchy under hats and the hairs falling out will be smaller. It is amazing that Marge started her chemo 3 days before me and is exactly 3 days ahead of me in losing her hair! What a blessing you all are to me! It's so good to know what to expect and to have others to hold hands with on this journey.
  • wje630
    wje630 Member Posts: 11
    Thanks For Welcoming Me
    Hi Everyone:

    Thanks for making me feel welcome here. I feel sort of bad, relating my problem when all of you have experienced so much worse.

    I had already had a hysterectomy back in 1995, so that part of this journey was behind me.

    My family has a history of cancer, all different kinds so I guess I shouldn't have been surprised when I was diagnosed. In fact, I used to tell people I was the only one left of my siblings who had not had any kind of cancer...I AM grateful that mine was at the Stage II when they discovered it. It may sound petty, but I was so embarrassed to even tell anyone what kind of cancer it was. I tried to make jokes about it to my kids, like " I always knew I was a pain in the butt, but this is not what I meant!"

    All of you ladies, are so brave...and I think you should be applauded for being willing to share your experiences with others here. And your sense of humor is so uplifting...I do know that laughter is the best medicine. Yes, there are plenty of times when all you want to do is cry, but then afterwards you feel cleansed and then you go on with your life.

    Like I said in my first post, if I had to do it over again, I would have tried even through the pain to continue my sex life, then maybe I wouldn't have ended up with this problem. When I brought it up to my onocologist, he was surprised because I didn't have the internal radiation, but believe me, by the time I was healed enough to have sex, it was very difficult. It felt like there was a wall that my guy would hit and could go no further. After my surgery to remove the scar tissue it was better, but the opening of my vagina had shrunk so much is was very painful...we used lots of lubrication but it didn't help that much. Only recently did I decide to try the dilators. I figured I had nothing to lose...
    These problems have made a difference in my relationship. There doesn't seem to be the connection we once had. Maybe my doctors thought because of my age (63 at that time) it wouldn't be a problem for me. My fiance is 5 years younger than me and he is still a very virle man. My radiology onocologist did suggest to me also to have sex 3 times a week, but for quite a long period, I was too sore to even think about it and by the time I did feel better it was too late.

    So...you ladies keep up with your sex life as best you can...your mates will appreciate it later.

    I may be an older women, but like Linda said, I am not dead!

    I will keep checking this forum for updates on all of you brave women...it does help to be able to share with others who can empathize with you. I pray that all of you will do well with your treatments and by the time 2009 rolls around, you will be better.

    Thanks again for letting me share with you.

    Linda: I am also a grandmother...6 times from 27 years down to 9. My two youngest granddaughters spend time with me and have been a great joy for me during my bad times.
    They always seem to be able to put a smile on my face...children are so pure and honest...if we could only be that way as adults.
  • shortmarge
    shortmarge Member Posts: 291

    Answering kiddies' questions in age appropriate way
    My grandkids are 6 and 7, and they overheard a lot of adult worried conversations and were warned not to jump on me, or cough on me, after my surgery. Initially the interruption in our usual daily close relationship and schedule was really a little scary for them. They are just old enough to know that cancer is a scary thing. At the very first, when I got out of the hospital, they shyed away from me. As soon as I was able I had them sleep over, and snuggled under the covers with them, I did my best to answer all of their questions. ("Are you trying not to die, Grammy?" Will you be able to see me from heaven?" "Did the devil give you cancer?" "Do little boys get cancer?" "Will my mommy get cancer?") I showed them my surgery staples, and later my scar. They both tried on my wig when I got it and all of my hats. Yesterday I let each of them gently pull my hair and come away with a little handful, and they joined me when I laughed. I think little kids follow your lead. If you can be lighthearted about it, so can they. Emily did ask me NOT to come to her school with my "Does-this-hat-make-my-head-look-bald?" baseball cap on; she wants me to wear the wig when I pick her up there. Now they both seem to spend more time snuggled up against me when they come over, comforting me and letting me comfort them. We have almost fallen back into our regular schedule of weekly sleep-overs and daily visits. My grandson and son both wear their hair "high and tight", military-short and are both very very blond, so Jakey always says "I am bald, too." I really think they will be okay about my bald head once they get used to it. Last night I slept with my 'sleeping hat' on so I wouldn't wake up to a hairy pillow. If I don't touch my head, my hair seems to hang on, so I think I can get through my appointment with the state official with no wig this afternoon (although I may wear a hat just to keep hair out of everyone's food! and also to get used to wearing a hat in public.) Then tomorrow I plan to go and get my hair cut off to about 1/2" all over, so it's not itchy under hats and the hairs falling out will be smaller. It is amazing that Marge started her chemo 3 days before me and is exactly 3 days ahead of me in losing her hair! What a blessing you all are to me! It's so good to know what to expect and to have others to hold hands with on this journey.

    Hair Cut
    I am so glad that I had my mom cut my hair. Wow, I didn't realize I has so much, even short. It's almost all gone now. Yesterday it was sore and I put baby oil on it. It felt so much better. This morning instead of washing what hair I had left with shampoo I used my body soap and it doesn't itch today. I was making jokes to my husband last night that I didn't have my comb over hair anymore. My daughter is really freaked out over it. I think seeing me with little hair puts the whole cancer thing in reality for her. She wants me to cover my head around the house but I keep telling her this just part of the battle to win the war!

    My son is in the Army so he to cuts both my grandsons with high and tights, they are only 3 and 1. To cute! I wish I lived close to them so we can have sleep overs, I miss them dearly but they are my inspiration to beat this.

    I start Radiation next week and will be done with it on 12/15. I look forward to March to be done with all of this!

    Linda, do you have a bigger appetite now? I can wake up in the middle of the night and eat a bowl of cereal and go back to sleep. Crazy!

    Hugs to all
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    My radiation won't even START until April!
    I think I will talk to my chemo oncologist about starting my radiation concurrent with my chemo like Marge is getting. My last chemo round is in early March, and then they were talking about a 1 month break before starting radiation. 5 weeks of external & 3 weeks of internal radiation takes me out until late June before I am out of treatment. That seems SOOOO long!

    I have an appointment at 2:30 tomorrow to have my hair all taken down to 1/2" all over. I was going to have it 'buzzed' but the book I got suggested that it might be 'bristly' on my sore head under hats or a wig if it is so short that it sticks up instead of laying down under the hat. The way it's coming out today, there may not be anything left to cut by this time tomorrow! It look like there's a dead hampster or chipmunk in my garbage can, with my hair rolled up in there. My husband is out shooting pool this afternoon and will be shocked that I have been gently yanking out my hair all afternoon, rather than let it keep drifting down over my keyboard one strand at a time. My head feels like I have a massive sunburn. I will try Marge's baby oil and body wash ideas after I get it cut off tomorrow. Thanks!

    Marge: I am hungry all the time, worse right after the chemo, but I have a really good appetite. I just cane from a business lunch, and because I am trying to eat the "5 fruits & vegetables daily" recommended by the nutritionist, I had tomato juice and a grilled chicken salad. But I could just have easily eaten the chicken-and-waffles-and-mashed-potatoes special and not been too full! I have no trouble keeping my weight up! HA!
  • deanna14
    deanna14 Member Posts: 732

    My radiation won't even START until April!
    I think I will talk to my chemo oncologist about starting my radiation concurrent with my chemo like Marge is getting. My last chemo round is in early March, and then they were talking about a 1 month break before starting radiation. 5 weeks of external & 3 weeks of internal radiation takes me out until late June before I am out of treatment. That seems SOOOO long!

    I have an appointment at 2:30 tomorrow to have my hair all taken down to 1/2" all over. I was going to have it 'buzzed' but the book I got suggested that it might be 'bristly' on my sore head under hats or a wig if it is so short that it sticks up instead of laying down under the hat. The way it's coming out today, there may not be anything left to cut by this time tomorrow! It look like there's a dead hampster or chipmunk in my garbage can, with my hair rolled up in there. My husband is out shooting pool this afternoon and will be shocked that I have been gently yanking out my hair all afternoon, rather than let it keep drifting down over my keyboard one strand at a time. My head feels like I have a massive sunburn. I will try Marge's baby oil and body wash ideas after I get it cut off tomorrow. Thanks!

    Marge: I am hungry all the time, worse right after the chemo, but I have a really good appetite. I just cane from a business lunch, and because I am trying to eat the "5 fruits & vegetables daily" recommended by the nutritionist, I had tomato juice and a grilled chicken salad. But I could just have easily eaten the chicken-and-waffles-and-mashed-potatoes special and not been too full! I have no trouble keeping my weight up! HA!

    Radiation concurrent with chemo
    I talked to my onc. about doing both to get the treatment done sooner. He said that some doctor's do prescribe the treatment that way. My doctor said in his experience, patients are more successful at completing treatments if they are not done concurrently. So maybe it is a doctor preference, they might let you try if you wanted to.

    Tomorrow I graduate from external radiation! I got a purple bracelet that says "Celebrate Hope" for a graduation present from the nurses at the radiation center today. I will start internal treatments on Wednesday and finish on Christmas Eve. I had 25 total external treatments. Then I will have 5 weeks off prior to starting chemotherapy. It will be July before I finish my treatments.