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Vulvar cancer/repeat/depression

cbryson
Posts: 23
Joined: Feb 2004

I am a first time user of ANY chat room; I've always been kind of scared of them. But I've reached a point where I am so depressed, and on anti-depressants, and I need people who have had cancer like me to talk to. In 1995, I was diagnosed with a skin cancer on my left vulvar area. It was a Stage III skin cancer, malignant, and so I was shipped off to Barnes-Jewish in St Louis and underwent a radiacal vulvectomy : removal of the entire labia and lymph nodes on the left side. At that time, all doctors were confident the entire cancer was removed, so I didn't have to have any follow-up radiation/chemo. Two years ago, the cancer re-appeared in a lower area on the same side. This time, my cancer doctor said five weeks chemo/radiation and then surgery to remove the affected area - and since it was so close to my anus, a possible colostemy. I was so sick during all this treatment, but I felt guilty complaining, because at the same time, a friend from work was undergoing six months of the same for ovarian cancer. I tried to be "good" - keep up a good face, etc. The radiation/chemo worked, and the surgery went okay, and no colostemy. However, since this second occurance, I have had nothing but trouble in the vulvar area: infections, itching, a D&C to remove polyps, lots of pain, several biopies when they thought they spotted a bad area. The diagnosis is that since it's such a thin-skinned area, there is not much that can be done for the destroyed tissues, except use topical creams, etc. In the middle of all this, I have started menopause, AND been diagnosed with both high blood pressure, and hypothyroidism (which made me gain a ton, makes me tired, and edgy - and we are still working out medication dosages to correct). Now, my pap smear has come out abnormal, and they want to do another biopsy only we can't because I'm currently suffering ANOTHER infection (strep) on the cancer side, and a yeast infection (caused by the penicillan) on the right. I just want to give it all up, people! I'm so tired of this whole thing. I'm also scared every time something new comes up that the cancer has returned. I am a normally cheerful, outgoing person, but lately I just want to keep away from people and hide at home. I'm tired of explaining all my illnesses to work bosses, and I think that people think I'm a hypochondriac and I feel bad whining when I haven't had it half as bad as say, someone who's had a mastectomy. Sorry this is so long, but it's my first message, and I sorta wanted to pour my heart out. Anyone who wants to correspond with me, please do. I just need a sympathetic shoulder to cry on at the moment, and I'll gladly return the favor when I am feeling better. Thanks for "listening." Cathy

epgnyc
Posts: 138
Joined: Apr 2003

Hi, Cathy. I myself am a breast cancer survivor and am usually on the breast cancer part of this discussion board. But I have a friend who was diagnosed last July with vulvar cancer and so I was looking to see if anyone had anything helpful to say about her cancer - when I cam across your posting. I feel so badly for you. You've certainly had a really difficult time of it and I can't say I blame you for feeling down. We all get that way sometimes when fighting cancer. It all just builds up....the treatments, the surgeries, the feeling sick all the time, the fears, the worries, the wondering when it will end and we can get back to a somewhat normal life. You've just hit one of those tough spots and are feeling discouraged. You're entitled. I for one am amazed at the strength you've shown in fighting your cancer - you've been through a lot and have coped with it all. Just take a deep breath and try to be kind to yourself. Surround yourself with friends and supportive family members during the difficult patch. I'm saying some prayers for you. Hang in there - you're great!
Ellen

cbryson
Posts: 23
Joined: Feb 2004

Ellen, Thank you for the encouraging words. I do have good friends, and they are a comfort to me, but sometimes I feel like I'm bothering people when I talk all the time about all the stuff going on. Have you ever felt that way? I go for another(!) biopsy March 25th and hopefully that will be negative and put everything right for awhile. Your prayers are much appreciated and I will reciprocate for both your friend (let me know how things go for her) and for you. Again, thanks for the comforting words: I will take a deep breath, and let myself relax until the biopsy, and go from there. Talk to you later, maybe?

Cathy

epgnyc
Posts: 138
Joined: Apr 2003

Hi, Cathy. I just wanted to say good luck with your biopsy on the 25th. I'm sending powerful good thoughts your way that it's negative and everything is clear. And I definitely did have times during my 10 months of treatment for breast cancer when I felt I shouldn't burden my friends and family any further....and believe me I have great friends and family. Sometimes it just needs to be someone who's going through it or has gone through the same thing that we need to talk to. So good luck. We're cheering for you.
Ellen

dcarl
Posts: 41
Joined: Feb 2003

Hi Cathy - I know exactly what you're going through, I had basically the same operations (radical vulvectomy and lymph nodes) except on my right side. It is so hard to explain to people since it's such an embarrassing situation. I find it especially difficult talking to men who ask about it. A lot of women don't really understand vulvar cancer either. Sounds like you were lucky to avoid the colostomy. I was really afraid mine would head in that direction, luckily it is moving in the other direction. I say luckily considering the alternative. I have yet to go a year without a procedure. I was diagnosed 3 years ago. April will be a year and my 3 month check up is in May. I know how you are feeling with the depression and all. I too am taking antidepressants but it began long before the cancer. I know I'm very lucky and I go on the chat room here sometimes and listen to what other people say. I can't believe some of the cancers they are talking about. Brain cancer, lung cancer breast cancer. They are very uplifting if you want to try out the chat room. Takes a while to jump into conversation but helpful non the less. I keep looking at myself compared to terminally ill patients and people in countries that have no health care at all. I know it sounds a little commercial but it keeps me going. I'd like to keep in touch with you and hope you'll respond to this message. I hope we can continue to support each other and get through this better people.

Diane

cbryson
Posts: 23
Joined: Feb 2004

Hi, Diane. It does sound like we are going through much the same things now and I will be glad to keep in touch with you and have someone whose shoulder I can cry on (and you can cry on mine!). I agree with you about vulvar cancer being embarrassing to explain, but get this: I had skin cancer on the vulvar area, which is really kinda hard to explain, since this is not an area you flash around in the sun alot, and I had always assumed that's how you got skin cancer. When they first told me, I was shocked. It was such an unusual thing, even fof the doctors, that when I had my original operation back in 1995, they brought in interns to my hospital room and used me as a "lesson!" And then they kept saying, well, it is so unusual, and we got it all, it's like a one-time thing. Well, then, exactly five years later, it popped up again directly below the original site. My doctor was shocked. Needless to say I was not a happy camper. At the moment, I'm very very worried, not just because of the biopsy on the 25th, but because I have a very sore area on the scar tissue on my "good" side, and that immediately screams "cancer!" to me. I'm going to see my doctor next week for that. Ah well, sigh. How are you doing this week? Oh, and I agree, I sometimes feel really bad for feeling sorry for myself when people have gone through so much more than me, but then I feel like I've gone through a lot too, so I should be able to feel sorry for me every now and then. Does that sound nuts? Well, I hope to hear back from you.

Cathy

dcarl
Posts: 41
Joined: Feb 2003

Hi Cathy, I'm glad we could make a connection. I hate being in this alone. I met a woman in my area who had vulvar cancer too but we just didn't click. She was into all this weird self help stuff like the power of touch and aromatherapy. I don't know about anyone else but that kind of stuff didn't do it for me. Don't get me wrong she is a very nice person and I appreciate her kinship. I always thought this might be a skin cancer but it was never discussed as such by my gyn onc.I don't blame you for being freaked out by the class full of students. I always say no when they ask me if I can be a learning exhibit. Unless there is only one person, it's a little less uncomfortable. I hope your biopsy goes alright on the 25th. I just found out today that I have a tear in my medial miniscus in my right knee and I'll need surgery. They are doing orthoscopic(sp?) on the 25th also and I should be fine by Monday. I'll be thinking of you and your biopsy that is on the same day. I hope you're wrong about the hunch you have about it being a recurrance. You are right, we are suffering too and I guess feeling sorry for ourselves is as much deserved as necessary for our own well being. Just try not to keep it inside - I found it soothing to talk about it if not with friends and family, I like to find people on this site to connect with. People you encounter here tend to understand better. I'll always be here if you need to talk.
take care and good luck on the 25th.

Diane

cbryson
Posts: 23
Joined: Feb 2004

Hi, Diane. Well, there have been a couple of changes and a little bit of a scare the last week or so. If you read my last new message, I'd found a sore place that I was so afraid might be cancer on the scar tissue on my "good" side. So, we cancelled my 25th biopsy (again), which is a vaginal biopsy due to an abnormal pap, and my cancer guy did a biopsy of this sore spot. Had to wait a whole weekend to find out that it was good news and not a recurrance of the skin cancer. So, now the vaginal biopsy is back on but for April 1st. So, I'll be thinking of you on the 25th and wishing you good luck with your knee surgery, and you can think of me on, ironically, April Fool's Day, being poked once again by an unfriendly instrument. I'll take a valium beforehand, so maybe I'll be out of it enough not to "suffer" so much. I'm glad to have someone like you to "complain" to: you are right, I shouldn't keep this stuff inside, but I've gotten very sensitive about "bothering" people with my problems. Ah well. You take care, and let me know how things go.

twinsmamaw
Posts: 5
Joined: Mar 2004

Hi Cathy,

I'm Kathy, I have lichen sclerosus, which my doctor says is a pre vulvular cancer. This is so hard. Also, my husband has non hodgkins lymphoma, he relapsed, and is getting chemo now, and will be getting a stem cell transplant in the near future. I just feel helpless about his situation and my situation too. I'm supposed to get my lichen sclerosus checked every three months, my biopsy was negative for cancer in December, but I'm due to go back in next week. I'm hoping for a good report, because both of us can't have cancer at the same time. I'm 50 years old, soon to be 51. The depression is about to get to me, everyone says you will find the strength somewhere, I'm looking. I'm praying for you. Kathy

cbryson
Posts: 23
Joined: Feb 2004

Kathy, I wish I could instantly make you feel better, but I can't. What I can do is tell you that my prayers are with you. I pray that your test comes out negative and that your husband will soon be back in remission. It is very depressing when all the problems pile on at once; I have felt that way more than once over the last 6 or 7 years. Eventually tho, things seem to come together, even when I get bad news. My friends are always there, and my family, and now nice people on this site. Please, please feel free to contact me here any time, especially if you just need an ear to bend. I'll be here. Let me know how your test went. I'll let you know about mine after April 1st. Keeping the faith, Cathy

dcarl
Posts: 41
Joined: Feb 2003

Kathy, I have vulvar cancer and know exactly how you feel. I know you have a double blow with your husband and all, but I'll be available if you'd like to vent. You can't go through this all and keep it inside. I also think it's easier to vent to total strangers merely because they aren't going to judge you. That's why I like to use this web site. Have you tried the chat room? They sometimes go too fast for me to jump in but they are very supportive. Isn't it just wonderful we are able to use stem cell research? Just imagine if it is deemed illegal. What then? We need to make sure we vote wisely in the upcoming election to keep the research alive. (hope you don't think I'm campaigning !) But keep it in your mind. What is lichen sclerosus? I have an idea in my mind but am not exactly sure. I do hope you've talked to your doc about the depression. Don't feel upset if you're prescribed something. You may find it helpful. Keep us informed on your biopsy.Will have nothing but good thoughts for you. Diane : )

dcarl
Posts: 41
Joined: Feb 2003

Cathy, sorry I haven't been logged on for a while. I'm really happy to hear about the spot being clear of the "C"word. Don't you just hate waiting for the results? So much goes through your mind. I'll be hoping for the best on the 1st.I hope your doc uses some sort of numbing agent before he does the biopsy! Can't imagine it without. I've been very itchy on my "good" side (as we say). I sure hope it isn't the dysplasia coming back. Will find out in May for my regular check up. I sincerely hope you continue to "bother" me with your problems. I tend to find that I make a connection with someone here and it peters out, it seems you like to correspond so I'll be here whenever you need. I'd like to think I can count on you, too. No one can fully understand the anxiety and other emotions we are going through like we can so don't feel as if you're all alone. That goes for anyone else out there going through this. Please keep in contact. (I hope this doesn't sound desperate!) but I really enjoy getting things off my chest. Hope to write soon. I've got a busy few weeks ahead of me but I'll make every effort to log on. Talk to you soon> Diane : )

cbryson
Posts: 23
Joined: Feb 2004

Diane, Good to hear from you. I guess you'll be going in for your knee surgery next week; good luck on that and let me know how it goes when you feel up to it. Even though I found out the spot wasn't skin cancer, I am still having just tons of trouble with itching (like you) and severe burning when I pee. Both my doctor and radiologist says that the radiation just basically burned all my delicate skin in the vagina area, and I'll probably have these kinds of problems forever. Have you been told this? They have tried every topical and antibiotic cream know to medical science, and now we are back to just plain old over the counter Neosporane. It helps a little, but I'm basically being reduced to sitz baths once a day now, and sometimes twice on weekends. The real problem is that anything touching the site, like underwear, just irritates the hell out of the area. I heal up quite a bit on weeknds because I don't wear underwear at home (now there's info you probably didn't need, huh? HA!)so the area gets "aired" out and I actually feel better by Mondays. But by end of week, it's all bad again. Sigh. I'm still scheduled for vaginal biopsy on April 1st, but I don't see how I'm going to stand it, even with the valium. I'll probably feel quite sorry for myself that day, and probably a couple of days afterward. Do you have problems like these or did you after chemo/radiation? Well, I've gone on enough for this time. Sure, I'd love to keep in touch with you; just like "talking", I can go on and on (let me know if you want shorter chats)and I need someone to "listen" to me, too, who can sympathize whole heartedly. You take care and good luck with your surgery. E-mail me anytime you need some comfort.

dcarl
Posts: 41
Joined: Feb 2003

Hi Cathy, It's the night before my knee scope. The only thing I'm nervous about is the anesthesia. I sometimes get nauseaus....can't wait!

I think the best healing help is letting the area "air out". Seems to get rid of the moisture that makes it irritated.

No, I've never had radiation or chemo - knock on wood - so I can't relate to any of that stuff.

Hopefully you'll get some good meds for your biopsy! Maybe get you a bit loopy for a while! Alwaays good for a laugh. At least you forget your problems for a while. I can't imagine not having some sort of novacain or something to numb the area.

If you haven't already done so, check out "misae" s message board. She has quite a story we could all learn from. She could probably use some support too.

Well, gotta go and get ready for the big day. (surgery). Talk to you soon - Diane

lilflutterb
Posts: 2
Joined: Mar 2004

hi c, i was just told i have vilvar cancer on the left side to, i,m scared to death!! i just did my second treatment of radition and now have to do chemo as a preventive measure i ask alot of questions and surround myself with friends and family. don,t try to do this alone and don,t lock yourself away. it won,t help you at all!! you sound like a strong person and you will get thru all this!!remember be strong positive your already halfway there!!

cbryson
Posts: 23
Joined: Feb 2004

L, thanks for your upbeat e-mail. I try to stay strong, but as the saying goes, sometimes all the days gang up on me at once. I'm having a bad week this week, and am worrying myself to death over the biopsy next week. Hoepfully, once is over, and I have a negative result, I'll be okay. Good luck with your treatments. I know how scarey it is; I still can't drive by the clinic without getting slightly ill. You will do well, I'm sure. If you do feel bad sometime, feel free to e-mail and cry on my shoulder. I usually check in twice a week. Cathy

dcarl
Posts: 41
Joined: Feb 2003

Hi Cathy,

Was thinking of you the other day. How did the biopsy go? Do hope you're feeling all right. Have you gotten any results yet? How about comments from the doctor? Did he/she notice anything specific? I know you were nervous about it and I hope it didn't hurt too much. Let me know what happens.
I had my knee surgery. I can't believe modern medicine! I went in there barely able to put weight on my knee and walked out a couple hours later with no pain at all! I still have to do a bit of physical therapy and keep ice on it but other than that I feel great! Glad it's over with. We have a trip to Hawaii planned for April 18th. At least I know I'll be able to walk. It's our 20th wedding anniversary. Can't believe it has been that long. Can't believe I'm old enough to have been married 20 years!! Time flies.
Be sure to talk to me as soon as you get your results. I'll keep my fingers crossed for you!

Diane

cbryson
Posts: 23
Joined: Feb 2004

Diane, How great that your knee surgery turned out so well. I'm so happy for you! Well I had my biopsy last Thursday and I'll tell you, now that I know how painful it is, I ain't never having it again! HA! It was okay at first as I was rather loopy from my Valium and 1/2 Anti-depressant, but once the "tester" (I still don't know what it was, just that it looks like a long skinny thermometer) hit the tip of my uterus, I had major cramping pain in both sides and just about flew off the table. The nurse was holding my hand the whole time. They made me lay there for about fifteen minutes after. I stayed home the rest of the day, and still wasn't feeling up to snuff Friday, so stayed home then, too. I'm feeling lots better today, tho I've started spotting a little. They said they'd call me Monday or Tuesday with results. As soon as I get them, I'll send you a quick e-mail, okay? You guys will love Hawaii. I went there in 1994 and had a grand time; it's lovely there, and if you get a chance, take some side tours. I went on a helicopter ride and got great pictures of a waterfall. Anyway, I'll e-mail you next week. Thanks for your concern. I'm glad you're there for me. Cathy

cbryson
Posts: 23
Joined: Feb 2004

Diane, a follow-up to previous message. Got the results back: NO CANCER! Yay! The doctor said even tho the pap smear had abnormal cells, the vaginal biopsy showed no abnormalities, and that's what they'll go by. So barring further incidents, I don't go back for another checkup until July. In case I don't hear from you again before you go, Happy Anniversary and have lots of fun in Hawaii. Stay well. Cathy

dcarl
Posts: 41
Joined: Feb 2003

WHOOO HOOO!!!! I am SO glad to hear your results!! Don't you just feel so much better knowing you're ok?
I'm sorry I haven't been on for a while - got a lot on my mind with the trip and all!My girls are staying home alone - I'm just a nervous wreck! I'm sure they'll be fine..
I see my ddoc the first week of May. Hopefully will talk to you before then.

GREAT NEWS!!!
Take care - Diane :)

dcarl
Posts: 41
Joined: Feb 2003

Cathy -

What's been going on? I haven't been on in what seems like ages. Our trip was wonderful, am ready to go back depsite the 10 hour plane ride!!
I hope you are well. I read yor reply to the new message board. I think I'll write to Cathy also.
I see my onc on Tuesday (9th). Am a bit nervous. I've had a lot of itching and bleeding on the left side now. Hope it's not what I think it is. Will let you know.

Hope to hear from you soon.

Diane

cbryson
Posts: 23
Joined: Feb 2004

Hi, Diane,

Glad to hear your trip went well. Sorry to hear you are experiencing some of the symptoms we know too well. What did your doctor say? I am having a lot of pain in my groin area, both sides, but most especially on my left, where all the lymph nodes were removed. It's been going on quite awhile, and may just be because I've gained so much weight over the last couple of years, but they are gonna do a cat scan May 22nd just to check. It's a clutching pain sometimes and a sharp pain all the others. So I don't know, it it's not one thing, it's another. I've been getting more depressed, so my doctor has recommended I see a therapist for awhile, in addition to a slight rise in my anti-depressant. Some days I feel okay, some days I can barely get out of bed. You probably know how I feel.

Yes, I hope I gave the "other" Cathy some advice that helped her. She hasn't gotten back to me yet.

You take care and let me know what your oncologist said, okay?

Cathy

dcarl
Posts: 41
Joined: Feb 2003

Hi Cathy,

It's Back. There were pre cancerous cells in the biopsy. Doc wants to see me June 23rd. Will decide what to do then. Probably another laser surgery. Will get through it like all the other times.

I hope you are okay. What did the cat scan show? Are you still in pain? I'm glad you're seeing a therapist re: the depression. I am controlling mine through anti depressants alone. I try not to dwell on the cancer and try to concentrate on living life with as much energy as possible. As we all know, life is too short. Please don't think I'm making light of the situation, believe me, I'm not. I was there too.

Let me know how you are - mentally as well as physically.

Diane :)

cbryson
Posts: 23
Joined: Feb 2004

Diane,

I'm so sorry to hear that your biopsy didn't turn out well. I haven't had laser surgery; what does it entail? (The first time they did the radical vulvectomy/lymph node reomoval and second time, after chemo/radiation, did surgical removal of skin at cancer site). Please keep me updated. I wish you the best of luck. I'll worry about you.

I haven't actually gone to see the therapist yet. I go on the 21st (and then the the cancer guy for a checkup on the 22nd - when it rains, it pours!). She did send me a lot of paperwork to fill out - my entire physical and mental history, as it were, so I guess we're serious here. I'm still getting depressed, hiding in bed, etc., so I still plan to go.

Oh, the cat scan was negative, which they were thrilled with. I gotta tell you something tho: when I feel bad, and have this pain, and they do a test, and then tell me nothing's there, this is great, I don't feel that it's great. Do you ever feel that way? I mean, geez, there must be SOMETHING wrong if I'm having pain, right? So when they tell me nothing's wrong, I actually get more depressed because I feel like I'm bothering people and they think I am a hypochondriac. Crazy, huh? I guess I do need to see a therapist. (Weak HA, HA).

Well, we will be going to see our respective doctors the same week, so you let me know how yours goes and I'll let you know how mine goes. I'm glad I have you to talk to. Thanks for being there.

Cathy

dcarl
Posts: 41
Joined: Feb 2003

Cathy,

Don't worry about me and the laser surgery. All they do is laser (burn) off the outer layer of skin so the cells are removed. Like I've said before, I don't think there is much feeling there anyway with all the other surgeries and all. Last time was a piece of cake.

Maybe all your pains are a product of anxiety? I'm no doctor... but just a suggestion. At least they're taking you seriously if they are running tests on you. Be thankful for that.

I'll talk to you in a few weeks.
Take care of yourself.

Diane

cbryson
Posts: 23
Joined: Feb 2004

Hi, Diane. Yeah, I figure the pain is a result of anxiety because I worry about every little thing now. So probably therapy will help.

Good to hear the laser surgery is not too terrible. Hope all goes well and I'll wait to hear back from you when you're ready.

Take care yourself.
Cathy

dcarl
Posts: 41
Joined: Feb 2003

Hi Cathy,

Well I'll be having another surgery in september. Doc said it's severe dysplasia about the size of a nickel. He's going to excise it rather than laser. I'll only be out of work a week. I had a feeling it was back.

How are things with you? I haven't written in a while. Have you seen the doctor since we last talked? Let me know how you're doing. Sorry I haven't been on for a while, you know how the summer is, you just hate to be indoors.

Talk to you soon I hope.

Diane :)

cbryson
Posts: 23
Joined: Feb 2004

Hi, Diane. Sorry to hear you've got another surgery ahead of you. Keep me posted on how you're doing, okay?

I went to my counseling (it turns out she's not a psychiatrist MD but a clinical psyhiatric social work - same diff, just less college. ANyway, Mary is very very nice and basically this first hour was just me telling her all the stuff I've been dealing with since my first cancer back in 1993. She is surprised I lasted so long before I started to talk to people for real. She wants me to stay on the Lexapro for now, and since one of my biggest problems seems to be that I can't seem to give up the hope that I am going to get better "down there," in direct contrariness to the obvious, she had me ask Dr Shaffer at my appt today if this was a lifelong condition (i.e., the itching, burning, sorenss etc from the radiation burns). He said yes, I will have some problem the rest of my life, altho some days will be better than others. And yet, I still can't seem to accept this. I want to (expect to?) wake up one morning and find I'm all well again. So, something to work on with the counselor. I have my dermatologist checkup in a couple of weeks. Then no more cancer stuff until next month. Sigh.

Well, you take care. I'm sure we'll be "speaking" again before your operation. Just to pump each other up, if nothing else! Love, Cathy

dcarl
Posts: 41
Joined: Feb 2003

Cathy,

I am so glad you found someone to talk to. Sounds like you made some progress! Keep up with it.. You even "sound" better. I know we'll always have to deal with this situation, I always say, it could always look bleaker. there are so many people with life threatening illness that I can live with the discomfort. I certainly wouldn't want to trade places with someone terminal.
Keep me up to date and I'll talk to you soon.

Diane

cbryson
Posts: 23
Joined: Feb 2004

Diane, Hi. Now I feel kinda bad. I know things could be much worse, and I'm glad they got all my cancer. But also feel so unhappy that I don't feel "good" anymore. Every day my cancer cite bothers me. I did take the counselor's advice and asked my doc if this was permanent, and he said yes, I would have some type of problem for the rest of my life due to the radiation damage on my vulvar area. All we can do is try different types of creams, etc. And yet, I still CANNOT accept this. I wake up each morning hoping that I will feel really good again, and I won't feel anything down there, and it NEVER happens. And yet, I can't give up the hope. It seems like if I do, I'll admit that I'm going to feel bad the rest of my life, and somehow I believe that that will crush me. So, I'll keep gong to the counselor, and try to make some progress. Hope you are doing okay. Let me know how things go for you. Thanks for listening. Cathy.

dcarl
Posts: 41
Joined: Feb 2003

HI Cathy,

Just thought I'd check in on you - see how you're doing. I know what you mean about the irritation and itching at the site. Sometimes I can't stand it any more either. I can't wait for this next surgery, I'm hoping I'll be a bit more comfortable after it's all over. I'm really uncomfortable.
Hope the counselor is still helping - if you're seeing him/her on a regular basis that is. I'm beginning to wonder if I should see someone too. I sincerely dread the thought of having sex. It is very uncormfortable and I just wish my husband would not want to. I hate feeling this way and am afraid to tell him. You know how mens egos are. I think their need for sex is greater too. Don't know what to do.
Keep in touch.
Hope to hear from you soon. Keep up the faith.

Diane

cbryson
Posts: 23
Joined: Feb 2004

Hi, Diane,

I have been seeing the counselor regularly, and it's actually helping. I am also having some family problems now, besides the health stuff, so it's nice to have someone neutral to talk to. She's very very patient and really listens, which my friends have all gotten tired of doing. So, I would recommend it to you, if you feel you need someone neutral to talk to.

I'm feeling a lttle better in the cancer site, but I'm still having problems with it. However, it's kinda being pushed into the background now as my Mother is about to run out of money, and we are trying to get her to realize she needs to go to a nursing home, and she basically is heavy denial. I also have new health problems with my blood pressure, which is causing blurry vision; sometimes I come home and can't see worth a damn. They call it Orthostatic Hypotension, or a sudden drop in blood pressure when you stand after sitting. It is not a "real" disease, so my doctor has to fiddle with my medications, which are the main cause of this. Sigh. And then one of my teeth fell right of my mouth -front tooth, naturally! So I look like somebody off of Hee Haw. Is life great or what???? How is yours? If you need to talk, just write me. I'm here for ya!

Cathy of the gap-toothed grin

cancersux's picture
cancersux
Posts: 2
Joined: Aug 2004

Hi Cathy,
I just felt the need to reply to your post from February. First, I can honestly say, "I know how you feel."
My name is Sharon I am 45. I was diagnosed in April 2004 with squamous cell carcinoma that grew on my right vulva and in my rectum. I consider myself fortunate to have a surgeon who is very well known in this field. I had a partial vulvectomy and removal of 2 rectal tumors in April 2004. I asked them not to remove my nodes until my cancer was staged. When the pathology came back that it was stage 3 I had my right lymph nodes/groin removed in June 2004, the day after my 45th birthday. They were not cancerous. I am still recovering.
My biggest fear is that my cancer will return or I will develop a secondary cancer. It consumes me, the fear is so real, I cannot get away from it. A side effect of my surgeries is that I get cysts on my vulva, every time I feel a lump I worry that it is cancer. My surgeon gave me a 2 year window....he says that is the time frame for having cancer again.
I just want you to know you are not alone, and you can email me anytime.
Take care, Cathy.
Sharon

cbryson
Posts: 23
Joined: Feb 2004

Sharon,

Thanks for the encouraging words; I kinda need them right now. I have started bleeding really heavily and clotting, so I'm going in for tests next week. So I know what you mean about being afraid of recurrances. I am always afraid, so much so, that I think I've become a bit of a hypochondriac now, in that any pain or whatever, I immediately associate with cancer. I am going to a counselor to kind of help me with this. But, unfortunately, family matters are now taking their toll as well: my Mother, who fell seriously ill a month ago, has been placed in a nursing home because she needs 24 hour care. I have to go to Kentucky in two weeks for a conference with medical staff and to shut down her retirement home aprt and sell her stuff, etc. So that kinda has me down right at the moment as well. I'm trying to keep the stiff upper lip thing going, but sometimes it is very hard.

I wish you good luck on your treatment and that you will not have a recurrance. Feel free to write me anytime you need support.

Cathy

dcarl
Posts: 41
Joined: Feb 2003

Hey toothless!!

Sorry I've been away for too long, I just re-read your message and it made me laugh(about the tooth that is). I hope you're doing well. I see you are having a time with your mother. hope it' s all taken care of.
I had surgery Sept 14th. One lesion removed and all was clear. Next check up in January.
glad to hear the counselor is helping. I knew it would. I always think it's easier to talk to a third party than to try to express yourself to family or friends. Gives you an outside perspective.
Keep in touch and I''ll try to do better myself.
Take care,

Diane

cbryson
Posts: 23
Joined: Feb 2004

Hi, Diane, I was awfully worried about you. Am glad to hear things went well. Good luck on your checkup in January.

We ended up placing Mother in a nursing home as she needs 24 hour care now. While physically she is getting better, mentally she is lost, and they are tweaking medications to see if they can get her to come back. It's an off and on thing, so they don't think its Alzheimers at this point, just something that happened during her illness, or it may be her way of not dealing with being in the nursing home. We just don't know. I went down for a week in October, cleaned out her apartment, arranged for stuff to be sent back here and to my brother in Texas, signed papers, and visited her. She is stick and bones, under 100 pounds, but was as feisty as ever.

Unfortunately, right now, I am going thru a health crises of sorts. My labia started itching like made and was extremely painful when it was't itching, and huge red lines came up. Went to see Schaffer and he says was really bad ulceration, and he did a 15 min biopsy of entire labia area, and you know how painful that can be! Anyway, am suppsed to get results of biopsy this week, and am nervous as hell. It will be five years March 2006, and the last time this recurred, it was exactly to the month the five year mark. Anyway, I'll let you know what happens.

It's really good to hear from you again. I missed you. I'm awfully glad I "stopped in" tonight. Later, alligator, Cathy

dcarl
Posts: 41
Joined: Feb 2003

Cathy,

sorry to hear about your recurrance. Just when you thought you were hitting the safety zone... Let me know how it went. Will be thinking of you.
I hope your mother is doing alright.
I haven't been up to much. Getting over Thanksgiving and now preparing for Christmas. Can't believe it's december already.
I'll be worrying until I hear from you. Write soon.

Diane

cbryson
Posts: 23
Joined: Feb 2004

Hi, Diane, A quick note to let you know my biopsy came out negative for cancer, thank God. It turned out to be a major infection/ulceration. So more atibiotics and creams. Oh Joy.

Am getting all ready for Christmas myself, though for the first time in almost twenty years, I will not be spending it with my Mom. I'm sending her some gifts and will talk to her by phone. Hope you have a great holiday season. Keep well, and we'll get back in touch after the New Year, okay? Cathy

Misae
Posts: 18
Joined: Feb 2004

Hi Cathy,
WOOOHOOO!! Glad that your last biopsy results were cancer free. You sure can be glad about it, but I'm sorry for the infection. I hope it's under controll now and has all healed up.

My name is Misae and haven't heard from Diane for some time. Your last reply to her was just a few minutes after hers, and she might not have seen it yet. I'm from another thread of posts, and while I haven't heard from her either, and I thought she was going for a follow up to her gyn/onc sometime this month, I just dropped in to see if she already checked in on you. But I saw that she hasn't, so we're in the same boat. I hope she's doing OK. Maybe she'll get back on us when she's been to her doc.

Anyway, I wanted to say "Hi" to you and to say congrats for the results in Dec. Diane would have been happy to read that. She's been missing out on that good news.
Misae

dcarl
Posts: 41
Joined: Feb 2003

Hey Cathy!!

I hope you don't think i deserted you!! i can't believe i haven't caught up with you since december! what kind of friend am I???
sooo glad to hear about the biopsy results. at least with the creams etc you know it'll go away. hopefully by now it has.
i had another spot removed. the margins weren't exactly clear so most likely will see another surgery in my future. sigh.....
hope you've been well since i last spoke with you. how did you do through the holidays? getting cabin fever in the cold weather? i can't wait until the weather breaks. spring can't come soon enough. i need some fresh air!!!
how is your mom?
i was told by my general practitioner that i have high cholesterol. big surprise there. she put me on medication. boy, i feel like my mother with all the pills evey day! i'm not supposed to be this old!!
hope to hear from you soon.
again, sorry for not checking in sooner.
love
diane

cbryson
Posts: 23
Joined: Feb 2004

Hi, Diane,

So nice to hear from you. As you can see, you are not the only one not checking in. I actually got a little tired of always thinking about cancer, so I quit for awhile. Unofortunately, my body seems to punish me for the effort, and I've had two more biopsies since I last wrote. Both negative - just showed a ton of scarring and inflamation - but I spent three days or so each time (I had them done on Fridays) worrying my socks off. Hey, I'm taking a ton of pills, too: I loved your comment about being like your Mom. I'm exactly the same way. I always just gagged at all the pills my Mother was taking and swore I'd never be that way, and I'm on 5 different pills (all maintenance). And now I've been diagnosed with diabetes. No new drugs for now, but I gotta change my whole lifestyle, for pete's sake, and test my blood sugar all the time. I CANNOT BELIEVE IT! I am still going to see a counselor as I tend to dip into depression now and again, and I've gotten into trouble at work with dockage this year (for some reason, I can't completely lift myself up. I seem to be better this week and I am going to TRY to come in as much of April as I can.

My mom is in the nursing home now, and she refuses to eat their food, so she weighs a whopping 92 pounds. She also refuses to do anything, like get out of bed. She tells me all the time that "it's time for me to go". I know she truly wants to, but unfortunately for her, Mother's body is a sturdy thing (good heart, good lungs,etc), so I think she will here a while longer. I try to call her every weekend to give her a cheer up and I plan to go see her in the summer.

Oh, guess what? I'm planning a two week trip over the Christmas holidays to California to see the Tournament of Roses parade plus something of the Hollywood/Beverly Hills sites. It's a Presly Tour trip. I'm really looking forward to it, and am trying to buck myself up with thought of it.

Ah well, sorry to bore you out of your mind. I'm really glad to hear from you. I worried about you. Sorry to hear you are still having some problems. You know I am praying for you.

Let me hear from you now and again. If you don't want to check here allthe time, please e-mail me anytime at cathyb72@msn.com

Cheers (Spring is here!!!!) Cathy

mariejoyce
Posts: 7
Joined: Nov 2004

Hi Cathy
I am Mariejoyce from Northern Illinois. I would love to communicate with you as I was diagnosed with Vulva Cancer in July 2004. They did radical surgery on Sept 13 removing most of the left vulva & lymph nodes on both sides. The surgery wasn't too bad but I have had many complications such as Hemmoraging out one of the drain tube holes, a huge Hematoma in the groin area, & now blood seepage for 5 weeks from the incision where the lymph nodes were removed on the right side..
Let me hear from you...

cbryson
Posts: 23
Joined: Feb 2004

Hi, Mariejoyce,

Hey, I'm from Central Illinois, so we are sort of neighbors! Sorry to hear about your situation and the complications that have followed. I know people hate to be told "I know how you feel," but in a way I do (as do others on this site). I actually didn't have any trouble at all with my first bout with vulvar cancer: operation went okay, no complications, and since they'd gotten it all, supposedly, no further treatment. It wasn't until my second bout and the chemo/radiation and etc that I began to have problems. But everybody is different. Are you going to have chemo/radiation after thay can get your other problems under control? If so, let me know how it goes; I will be here if you need a shoulder to lean on. I hope and pray that you get better quickly. Feel free to write me anytime you want.

Cathy

mariejoyce
Posts: 7
Joined: Nov 2004

Hi Cathy
Thanks for your reply to me. I am wondering if it is just me or there are others that are obsessed with our health problems. Every waking hour I am thinking that I have this thing robbing me of life. It is hard to even get excited over Christmas. Seems it just isn't the same as it always has been. Guess I am wondering if I will be here for the next one?? Wish there were some way I could look at everything optomistically....
Mariejoyce

cbryson
Posts: 23
Joined: Feb 2004

Happy New Year, Maryjoyce,

Actually, I'm sort of the wrong person to ask about becoming obsessed with health problem, as I'm afraid I've become a virtual hypochodriac since my second diagnosis. I run to the doctor for everything, always thinking something new (or old) is wrong with me. I am seeing a counselor now to help me focus outward instead of inward, and it's working slowly, slowly, but you might want to try this, too. it helps to have other people to talk to, especially as sometimes friends, as good-hearted as they are, do get tired of hearing complaints all the time (at least mine do). And of course, you can always write to me. I can be very sympathetic, as I know how you feel, literally. It's quite hard to be optimistic, tho I am determined to try in 2005. In one more year, I'll have been clear for five years, and I'm afraid and excited, as my second cancer came back exactly five years later. But we are all different, aren't we, and you and I both need to think we are well now and kinda get back to "life." How about we help each other do that, huh? Take, care, Cathy

Callie_Austin
Posts: 1
Joined: Nov 2008

Hello Cathy, I just started treatment for skin cancer and have had breast cancer. My younger sister -- 48 -- passed away last year from colon cancer. She was not the type to complain or want any type of networking with people. She suffered in silence. I have discovered a lump in the labial area and will see my doctor when I have a physical on December 1. I am using Carac for the skin cancer situation. I feel small when I complain about the side effects but then become grateful that there is treatment and that I have medical insurance and loving, dear family. Gratitude lists are a big help for me -- especially when I don't feel like making one. It is hard for all us, no matter what type of cancer we have or have had, to not feel that we are time bombs ready to go off. E-mail and these opportunities are fantastic for people because isolation is crippling. You have so many things going on and some are similar to mine, simply because I am getting older! I haven't had the challenges you have faced but I have a knowledge of the feelings no matter what we are presented with. First, I feel frightened and vulnerable. I become afraid that the doctors don't know what they are doing and that I will be the person they overlook something on. Cathy, your letter touched me so much. I will pray for you and hope to know how you are doing along the way. Bless you -- take care. Jan

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