• ladyd2013's Avatar

    ladyd2013 wrote on carm's wall

    Ty Carm. The radiation has damaged my vaginal area. Was told by my gyno dr that because of the amount of radiation i had that it has closed. I have 2 gyno drs say the same and both drs are from different states.

    23 Comments
    • carm's Avatar
      carm

      @geekling,
      It sounds like an exenteration. It is a common surgery most often seen with cervical cancer or cancers that have invaded the pelvic cradle or a surgery done to negate radiotherapy fallout.

      over 1 year ago
    • geekling's Avatar
      geekling

      @carm, okay if the cancer has spread its roots that far which would certainly be a stage 4 would it not? But how in holy heck is damage negated by removing the part, which would be, in my mind, the most extreme damage possible.

      over 1 year ago
    • carm's Avatar
      carm

      @geekling,
      First of all let me say that I admire your curiosity and your need to understand. With the exception of a brain tumor, most cancers do not have "roots." Cancer tumors are a collection of cells that pile on each other but do not stick to each other. That pile becomes a lump, becomes a XXX, etc. It is kind of like if you poured 10 pounds of pennies on your table. They would create a XXX but of course a few would roll off and farther down the length of the table. If your cells move away from their original site but still within a local area, that is considered locally advanced and a stage III...not stage IV. If the cells however, travel to a non local region like from the anal verge to the liver...that would be advanced at a stage IV. When the whole pelvic cradle is consumed by growth, the best solution is a pelvic exenteration where both vaginal and rectal vaults are removed and sealed along with the removal of the bladder. Neobladders are created using the small intestine when the idea of an ileostomy is not a choice. The small intestine can also be used to make an internal colostomy like an S pouch or J pouch of the rectal vaults were to remain open without the rectum. There have been a lot of advances in oncologic surgeries. Keep in mind that if the cancer cells are found in the lymph nodes nearest to their site of origin, that is an expected result. After all, lymph nodes are the secondary lymph system...a drain-like portal that material marked for destruction is often found within so that makes those cells in a loco-regional zone. Certain brain tumors have roots or "fingers" that dive deep toward the brain stem on recurrence which make them inoperable, but not untreatable. I hope this clarifies and gives you the answers you seek.

      over 1 year ago
  • ladyd2013's Avatar

    ladyd2013 asked a questionAnal Cancer

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    9 answers
    • svhous' Avatar
      svhous

      Sorry you don't do FB, but thanks JaneA, for making clear one of the most common side effects of pelvic radiation. The pelvic floor PT can be really helpful, the sooner the better. There are other things one can do for herself, but this forum may be too embarrassing for the discussion. Also the other long-term side effects.
      I'd recommend joining FB, if for no other reason than this private group where all the details can be discussed openly. You don't have to get a bunch of friends and spend a lot of time online, but you'll have the benefit of the experience of dozens of us who have been through the same nasty treatment and its aftereffects.
      - Sally

      over 1 year ago
    • JaneA's Avatar
      JaneA

      svhous, you are correct that it is best to begin using a vaginal dilator about 8 weeks after pelvic radiation. However, it is recommended that your surgery should be 8-10 weeks after completion of your pelvic radiation.

      My sigmoid colon, rectum and anus were removed and my butt was sutured shut. I had sutures beginning from just behind my vagina to the top of my butt crack. There was no physical way to even try to use a dilator at that point.

      I did the pelvic floor physical therapy about nine months later.

      The other thing that patients don't realize is that our pelvic floor muscles get really tight from the radiation. They connect to our hamstring muscles in the back of our thigh. Doing hamstring stretches on a regular basis helps keeps your body mobile and helps prevent late-effect pelvic pain.

      You are so right. FB offers so many specialized groups that hare very helpful.

      over 1 year ago
    • Skyemberr's Avatar
      Skyemberr

      I have problems similar to @JaneA except that I had to have a transplant of the vaginal wall and that area is now just incredibly shallow. There is some treatment they can do but since I became stage IV the doctors are not willing to do it.

      That said, on the emotional side, I am very lucky that I have a very understanding husband who watched me go through all of the surgeries and knows that when I can't do what I want to it's for real... I am not trying to be distant. Honestly, if we were a different couple we'd either have to be in couples counseling for it or we'd be having some serious problems. ( I am not sure if we won't end up there anyway). When I find a way past my current diagnosis through clinicals I hope to try to get some stuff fixed.

      Good luck to you! I hope you find some good help and answers. You're not alone in these problems.

      over 1 year ago
  • ladyd2013's Avatar

    ladyd2013 started following

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  • ladyd2013's Avatar

    ladyd2013 wrote on happydyad's wall

    Gm and ty for your suggestion. I appreciate your kind words and we'll I have alot to try and sift thru to get me out of this crazy fog. But I'm glad I'm not losing my mind. That's all I don't need on top of everything I am dealing with.

  • ladyd2013's Avatar

    ladyd2013 wrote on BoiseB's wall

    Gm BoiseB. Ty for for your response. A member on here gave me a number to a clinic out here that I'm really excited to go. I need this like yesterday. I really have to cleanse my soul about my journey. I haven't really been able to talk about it with my family. They just assume hey your cleared it's done move on kinda thinking. So I don't discuss or mention much about what it is I'm going thru eternally. I mention I'm in pain but in one ear out the other. But I appreciate your kind words and helpful suggestions. God bless and take care

    2 Comments
    • BoiseB's Avatar
      BoiseB

      I have the opposite problem, my family will not let me forget, I have cancer. But right now. I am dealing with more serious problems than cancer so their concern is welcome. Of course, it helps that two of my family are nurses and one is a Dr. Well take care of yourself. And Don't let anyone Bully You.
      God Bless

      about 4 years ago
    • ladyd2013's Avatar
      ladyd2013

      Well I hope everything goes smoothly for you. And ty for the kind words. Take care

      about 4 years ago
  • ladyd2013's Avatar

    ladyd2013 wrote on Rolltidelynne's wall

    Gm lynne..I have read on Chemo brain when I first started the trestment. I first realized I had it when my mom came down and stayed with us for a few weeks while I was in treatment. Her and I were talking and all of a sudden I went completely blank. Then we had a problem with our cable the tech was out he and I were talking and in mid sentence I lost all train of thought couldn't remember nothing. My mom was there then too and she finished my conversation. We found the article while I was waiting to have my radiation that day. My mom and I started laughing. I said hey that's ME.. we brought the article home oviously and I showed my youngest it and my husband and they weren't phased by it at all. My youngest had a really tough time when we found out I had cancer. To this day she doesn't talk about it she just rolls her eyes. Anyways I just thought that when I was done with treatment I would go back to what ever normal was prior to cancer. It's just been lately actually months and months now that I've been concerned about it and thought I was losing what mind I had left. Ty very much for responding and for the links to articles you've read. I don't discuss with this family anything going on with me related to my cancer because they make me feel like your done with that now move on kinda feeling. It's sad because with them in their lives what bothers them is sooo XXX important it warrants listening child and husband that I just suffer in silence my pain or thoughts about my journey.

    2 Comments
    • Rolltidelynne's Avatar
      Rolltidelynne

      Ladyd2013, first let me apologize for just now seeing this post!! I hadn't been on for awhile and when I have it's been quick n off. Lol I could speak to you for hours about everything!! Lol and we prob will over time do just that!!! Lol before I start please please please let me be your person to talk to!!!! I will be more than happy to be your "partner in crime" to vent to, discuss similarities in treatment experiences, ANYTHING!!!!
      I thought I was getting dementia or Alzheimer's!!! I REALLY couldn't imagine why I was having so much trouble! My adult children were getting VERY aggravated w me!!! Since I live alone, I really don't have anyone around to help me:( I would find myself really forgetting what I was doing even at home!!! I could be mopping and stop n leave the room for a reason n forget I had been mopping!!!!! I could blank out in a conversation just like you did!! Oh it was bad:( then I read that article n it made such sense!! Also I find if I'm really tired it's worse:( I also had an ear infection and I've been on antibiotic and it's gotten a little better. Could it be related? Idk...maybe having been sick I was needing more sleep?!?! Now that I'm rested its better?!?! Or maybe just knowing what it is helps w my anxiety about it:)) I showed my kids and they ignored the article, too!!!! Kids... Ha ha
      I discovered early on, because my cancer upset my kids so badly, to not discuss everything w them!! I tell them what they HAVE to know n that's about it! That's one reason I LOVE this site!! I can say stuff here n be really honest about my feelings, fears, etc!! Then it doesn't hurt my kids and make them worry more!!
      I had to fight not only the cancer but for my INDEPENDENCE!! I'm not ready to be treated like an old lady sitting in a rocking chair!!! Ha ha. One day I willbe that lady, but NOT now!!
      Before my husband left, I would try to talk to him about my cancer and he would say can we talk about it later? Or he would say what's there to talk about. Just do what the drs tell you to do!! I wanted to scream but I didnt! I thought maybe I was discussing it too much!?!?! But the truth is, he was the ONLY person I DID talk to about it and he would shoot me down before I started!! Lol I believe we HAVE to talk n work through it!! It's natural! We just went through a life changing experience and our time now is precious and valuable!! We want each day to count:))
      Any way I'm so glad you reached out!!! Thanks:) I like having new buddies:))

      about 4 years ago
    • ladyd2013's Avatar
      ladyd2013

      Hi Roll... ty for responding and no apologies needed. It's easy to miss someone's post or comment. I'm fine so no worries. I can relate about the children and them not wanting to talk or know about what the cancer treatment has done to us. It's upsetting to feel that were not being listened to. And yes this is a great site for being able to vent or cry or ask questions that those close to us just don't understand. I question alot about my existence since my treatment. Yesterday was my 2yr when told I had cancer and even though it is over i felt like it was yesterday all over. I felt lost and scared and very emotional. But it's a new day and I'm ok. It would be great to have a buddy to conversation with and correspond with on different matters. Since moving to vegas I only have my kids and hubby no friends anymore since my treatments are finished. So it sounds nice. I hope you find what your looking for and that each day is a good one. My memory well it is what it's suppose to be I guess. I'm hoping to hook up with the caring place here in vegas to start in a support group and to do different activities also. A member from here gave me the info to call. And I'm very greatful that we have a place to go. Those around me seem to have forgotten I was fighting cancer and at time I don't believe I did. I guess I see it as an important time in my life and it saddens me that no one else takes pride in it that I survived it but am still fighting it but with the side effects and the damaged it's caused me for ever. Well Roll I wish you a blessed day and take care...

      about 4 years ago