Female issues - Questions for the gals on the board

cbs6931

Based on posts I'd read here I thought it would be a good idea to go see my gynecologist to ensure that I do not end up with some of the problems and issues that others have run into. Also, I've been having a small amount of discharge that I wanted to have checked. And
there were a couple of bumps I had noticed that were not there prior to radiation and chemo.

The discharge is supposedly pus and she put me on an antibiotic. The bumps she claims are sebacious cysts - these were not there prior to cancer treatment. The piece that has me drastically concerned is that she has noticed white patches that she immediately thought were cancerous wanted to biopsy. Since I had no female issues prior to treatment for cancer I thought that was extreme and we settled on hormone therapy for two months. You can imagine how I feel after this. The time following treatment is difficult enough mentally without getting another kick in the rear.It is hard for me to imagine that radiation therapy could immediately cause another form of cancer. I'm thinking that this is strictly radiation damage that will improve with time, but also wonder if radiation could have caused a condition caused Lichen Sclerosis.

Anyway I'm calling my Radiation Oncologist today, and I'm going to request a referral to a Gynecology Oncologist who should have more experience with radiation damage and other conditions or gynecological issues related to treatment for cancer.

If any of you have had similar issues or experiences can you share them? Surely I am not the only one running into this... very discouraging. I want to end this on a positive note though since I'm a glass is half full type - it does not appear that I have the shrinkage and stricture issues - YEAH!

Thanks to everyone,

Cathy

mp327

Hi Cathy!
I'm not sure I can give you any advice on this, as I have not dealt with this type of issue. I think you are doing the right thing by getting a referral to a gyn oncologist. The radiation can do so many things to us and that doctor should have more knowledge about side/after effects. I hope you get some answers and that whatever it is is not serious. Please let us know.

z

Cathy
Hi Cathy,

I completed tx on 6-30-09, and in 4-10 I went to the gyno for my yearly. I still had irritation on the vulva from rad, so the PA prescribed estrogen cream for me. The estrogen cream has helped immensly. The PA noticed a small line that she believes is scar tissue, I have a follow up in June and if it has not healed she will biopsy at that time. I agree that you should go to a gyno oncologist, I initally tried to make an appt with one, and explained my anal cancer tx, and was told that they only treat gynocological cancer treated patients. I trust my PA, she is the one that said that my anal cancer was not a hemroid, and reffered me to a GI. My pap smear came back normal. So I will see in June. I hope that its just radiation issues for you, as you just recently completed tx, and it takes time for us to heal. I wish you well. Lori

lizdeli

z said:

Cathy
Hi Cathy,

I completed tx on 6-30-09, and in 4-10 I went to the gyno for my yearly. I still had irritation on the vulva from rad, so the PA prescribed estrogen cream for me. The estrogen cream has helped immensly. The PA noticed a small line that she believes is scar tissue, I have a follow up in June and if it has not healed she will biopsy at that time. I agree that you should go to a gyno oncologist, I initally tried to make an appt with one, and explained my anal cancer tx, and was told that they only treat gynocological cancer treated patients. I trust my PA, she is the one that said that my anal cancer was not a hemroid, and reffered me to a GI. My pap smear came back normal. So I will see in June. I hope that its just radiation issues for you, as you just recently completed tx, and it takes time for us to heal. I wish you well. Lori

Cathy
Hi Cathy,
I didn't have symptoms that you describe. I have been to my gyno twice for follow up and so far so good. I'm not a doctor....but it sounds like it could be scarring from radiation. Our bodies took an incredible amount of radiation and we saw what it did to the skin on outside so we can just imagine what it did to the skin on the inside. My radiologist used a 'protector" of sorts during radiation so I've been greatly spared a lot of issues related to that area. I think you are on the right track to have it follow up on. Please keep us posted.

Liz

gladteacher

woman issues
Hi Cathy,
I know how scared you are. This post recovery period for me has been very hard. I just went in for my PET scan 2 weeks ago and there were no spots on the anal area, but in my lungs. They don't think it is cancer but took lots of blood workup that I will get the results of tomorrow. Anyway, when I saw my radiology oncologist, I told him I had pain in my vagina. They gave me information to buy vaginal dilators. I am not dating or seeing anyone at the present time, but want to be ready if I want to have sex sometime in the future! Haha. The new normal. Nothing has been normal since therapy started on Dec. 7, 2009. It has been four months now since therapy has ended. I had skin tags from the radiation removed from the anal area last week with the biopsy. I guess I find out about that also. Why isn't this healing going faster? I am tired of being on pain pills. The hardest thing is not knowing if there will be diarrhea or constipation. It still hurts to sit for a long time. I go to the wound center also, and they say it is slowly healing, but it still does not feel normal. I stay in the house much of the time. I don't feel energetic enough to go out. Are there others out there with these problems? Please let me know. Gladie (Gladteacher)

lemonade

gladteacher said:

woman issues
Hi Cathy,
I know how scared you are. This post recovery period for me has been very hard. I just went in for my PET scan 2 weeks ago and there were no spots on the anal area, but in my lungs. They don't think it is cancer but took lots of blood workup that I will get the results of tomorrow. Anyway, when I saw my radiology oncologist, I told him I had pain in my vagina. They gave me information to buy vaginal dilators. I am not dating or seeing anyone at the present time, but want to be ready if I want to have sex sometime in the future! Haha. The new normal. Nothing has been normal since therapy started on Dec. 7, 2009. It has been four months now since therapy has ended. I had skin tags from the radiation removed from the anal area last week with the biopsy. I guess I find out about that also. Why isn't this healing going faster? I am tired of being on pain pills. The hardest thing is not knowing if there will be diarrhea or constipation. It still hurts to sit for a long time. I go to the wound center also, and they say it is slowly healing, but it still does not feel normal. I stay in the house much of the time. I don't feel energetic enough to go out. Are there others out there with these problems? Please let me know. Gladie (Gladteacher)

women issues
I just had my PET/CT follow-up and it shows NED, thank goodness. Then my oncologist told me that most recurrences don't occur during the first year after treatment anyway. I finished treatment 10-09. What a buzzkill. Even though it is NED, I still don't feel relieved. All of my friends are relieved though and they don't quite understand my attitude.

Yes, I use my dilator 3X per week. I also use Estrace hormone cream about 3 X per week. I asked my doctor why my left ankle stays swollen all the time now. I had cancer in 1 lymph node on the left side, as well as the anal tumor. He said it was damage from the chemo? or radiation - can't remember which - and it would probably swell for the rest of my life. He recommended compression socks. This just started last month out of nowhere. It seems like I get a new side effect every month or two.

It was bad enough keeping up with the maintenance when I just had to color my hair and keep my nails done. Now I get to add physical therapy, dilator therapy, compression hose, and it goes on and on. By the way, my energy level isn't where it was either, but I also just had shoulder surgery 2 weeks ago. I'm tired of having pain too. Glad to be alive though.

Barbara

z

gladteacher said:

woman issues
Hi Cathy,
I know how scared you are. This post recovery period for me has been very hard. I just went in for my PET scan 2 weeks ago and there were no spots on the anal area, but in my lungs. They don't think it is cancer but took lots of blood workup that I will get the results of tomorrow. Anyway, when I saw my radiology oncologist, I told him I had pain in my vagina. They gave me information to buy vaginal dilators. I am not dating or seeing anyone at the present time, but want to be ready if I want to have sex sometime in the future! Haha. The new normal. Nothing has been normal since therapy started on Dec. 7, 2009. It has been four months now since therapy has ended. I had skin tags from the radiation removed from the anal area last week with the biopsy. I guess I find out about that also. Why isn't this healing going faster? I am tired of being on pain pills. The hardest thing is not knowing if there will be diarrhea or constipation. It still hurts to sit for a long time. I go to the wound center also, and they say it is slowly healing, but it still does not feel normal. I stay in the house much of the time. I don't feel energetic enough to go out. Are there others out there with these problems? Please let me know. Gladie (Gladteacher)

gladteacher
Hi Gladie,

I completed tx 6-30-09, and I know I had urgency issues and diarreha for about 4 months. Now at 11 months out I am back to normal, slight tenderness, its just a really slow healing process. I had a pet-ct this month and the anal area showed a 4.3 SUV uptake, which was attributed to a prior biopsy in March, that is still healing. I also have a 7mm solitary lung nodule with an SUV uptake of .08, and normal lung tissue is .05. My onc will have me have a ct in August. He doesn't think is cancer either, just inflamation. I know another anal cancer surviovor with 2 4mm nodules that they have been watching for years and they have not changed at all. I quit smoking after 35 years on 5-7-09, so mine is hopefully just inflamation. I understand that chemo can cause inflamation in the lungs. I wish you well with your blood and test results. Lori

cbs6931

lemonade said:

women issues
I just had my PET/CT follow-up and it shows NED, thank goodness. Then my oncologist told me that most recurrences don't occur during the first year after treatment anyway. I finished treatment 10-09. What a buzzkill. Even though it is NED, I still don't feel relieved. All of my friends are relieved though and they don't quite understand my attitude.

Yes, I use my dilator 3X per week. I also use Estrace hormone cream about 3 X per week. I asked my doctor why my left ankle stays swollen all the time now. I had cancer in 1 lymph node on the left side, as well as the anal tumor. He said it was damage from the chemo? or radiation - can't remember which - and it would probably swell for the rest of my life. He recommended compression socks. This just started last month out of nowhere. It seems like I get a new side effect every month or two.

It was bad enough keeping up with the maintenance when I just had to color my hair and keep my nails done. Now I get to add physical therapy, dilator therapy, compression hose, and it goes on and on. By the way, my energy level isn't where it was either, but I also just had shoulder surgery 2 weeks ago. I'm tired of having pain too. Glad to be alive though.

Barbara

Thanks!!!
Bless you for making me laugh - I really needed a good belly laugh today. You are so right about the maintenance piece. I had a plus in loosing my hair (darn it - really would have preferred to keep it...) The really good things about loosing my hair are: 1) Saves me $200 a month for cut and highlights. 2) Its dry in 10 seconds. 3) I can put the darn wig on in probably 5 seconds as opposed to blow drying for 30 minutes. The down side is I look like a deranged dandelion!

Know what you mean about the energy level - I have none either, and I'm noticing a lack of flexibility particularly in my legs. My son has a Wii and I'm thinking about getting the FIT program and working on the Yoga at home.

A hot bath has been a real comfort to me through this.

Maybe we ought to design some snappy compression socks - do you want stripes or polka dots???

Wishing you pain free and swelling free days and a quick recovery on the shoulder. Good thing we can keep our sense of humor.

Good thoughts and prayers coming your way,

Cathy

cbs6931

gladteacher said:

woman issues
Hi Cathy,
I know how scared you are. This post recovery period for me has been very hard. I just went in for my PET scan 2 weeks ago and there were no spots on the anal area, but in my lungs. They don't think it is cancer but took lots of blood workup that I will get the results of tomorrow. Anyway, when I saw my radiology oncologist, I told him I had pain in my vagina. They gave me information to buy vaginal dilators. I am not dating or seeing anyone at the present time, but want to be ready if I want to have sex sometime in the future! Haha. The new normal. Nothing has been normal since therapy started on Dec. 7, 2009. It has been four months now since therapy has ended. I had skin tags from the radiation removed from the anal area last week with the biopsy. I guess I find out about that also. Why isn't this healing going faster? I am tired of being on pain pills. The hardest thing is not knowing if there will be diarrhea or constipation. It still hurts to sit for a long time. I go to the wound center also, and they say it is slowly healing, but it still does not feel normal. I stay in the house much of the time. I don't feel energetic enough to go out. Are there others out there with these problems? Please let me know. Gladie (Gladteacher)

Thanks!
Hey Gladie,

Thanks so much. Post recovery has been hard both physically and mentally. I've been spending alot of time resting inside as well. Although this week I have been pushing myself to walk because I'm concerned if I don't make an effort I'll never get my stamina back. I guess the proof will be in the pudding so to speak. I've been sore at night and my leg muscles are very tight but I'm going to keep at.

Hang in there and keep the chin up - things will get better!

Cathy

cbs6931

The latest scoop
I called my favorite nurse at my Rad. Oncologist's office and explained the situation to her. She got me in to see my Rad. Oncologist this am who had done an exam prior to treatment. His take is I'm barely out of treatment and will be healing for quite some time. He was thankful I did not allow her to perform biopsies because they would not have healed well, and he is not concerned about the areas being cancerous. (YEAH!) So, I'm going to continue using the estrogen cream - taking the progesterone, and finish up the antibiotic in case there is an infection, and then I'm going to forget about it until I seem my surgeon in a couple of months.

I really appreciate all the posts and comments - you just never know what to expect or what you will get hit with yet. You guys are all terrific and I appreciate each of you very much!

Cathy

cbs6931

The latest scoop
I called my favorite nurse at my Rad. Oncologist's office and explained the situation to her. She got me in to see my Rad. Oncologist this am who had done an exam prior to treatment. His take is I'm barely out of treatment and will be healing for quite some time. He was thankful I did not allow her to perform biopsies because they would not have healed well, and he is not concerned about the areas being cancerous. (YEAH!) So, I'm going to continue using the estrogen cream - taking the progesterone, and finish up the antibiotic in case there is an infection, and then I'm going to forget about it until I seem my surgeon in a couple of months.

I really appreciate all the posts and comments - you just never know what to expect or what you will get hit with yet. You guys are all terrific and I appreciate each of you very much!

Cathy

JDuke

z said:

gladteacher
Hi Gladie,

I completed tx 6-30-09, and I know I had urgency issues and diarreha for about 4 months. Now at 11 months out I am back to normal, slight tenderness, its just a really slow healing process. I had a pet-ct this month and the anal area showed a 4.3 SUV uptake, which was attributed to a prior biopsy in March, that is still healing. I also have a 7mm solitary lung nodule with an SUV uptake of .08, and normal lung tissue is .05. My onc will have me have a ct in August. He doesn't think is cancer either, just inflamation. I know another anal cancer surviovor with 2 4mm nodules that they have been watching for years and they have not changed at all. I quit smoking after 35 years on 5-7-09, so mine is hopefully just inflamation. I understand that chemo can cause inflamation in the lungs. I wish you well with your blood and test results. Lori

Lori,
Would you share some more information with me about the "anal cancer survivor" with the 2 nodules?
Thanks,
Joanne

z

JDuke said:

Lori,
Would you share some more information with me about the "anal cancer survivor" with the 2 nodules?
Thanks,
Joanne

Joanne
Hi Joanne,

The anal cancer survivor is dawnmarie, from the rare cancer alliance web site. I had posted about my pet-ct results there, and dawnmarie replied that they did a full ct to her in Nov of 09 and found the nodules, and then in March another ct to check the nodules, and the nodules remained the same size. Her dr said that sometimes chemo causes this in the lungs, and they will just watch them. He also said that they could have been there for years, from a previous lung infection. My nodule was not there until my 3rd pet-cet scan. If you go to rare cancer alliance and do a search the post is under pet-ct results. I hope that others with lung nodules will post, so that we can compare notes. I wish you well. Lori

gladteacher

z said:

gladteacher
Hi Gladie,

I completed tx 6-30-09, and I know I had urgency issues and diarreha for about 4 months. Now at 11 months out I am back to normal, slight tenderness, its just a really slow healing process. I had a pet-ct this month and the anal area showed a 4.3 SUV uptake, which was attributed to a prior biopsy in March, that is still healing. I also have a 7mm solitary lung nodule with an SUV uptake of .08, and normal lung tissue is .05. My onc will have me have a ct in August. He doesn't think is cancer either, just inflamation. I know another anal cancer surviovor with 2 4mm nodules that they have been watching for years and they have not changed at all. I quit smoking after 35 years on 5-7-09, so mine is hopefully just inflamation. I understand that chemo can cause inflamation in the lungs. I wish you well with your blood and test results. Lori

female issues
Thanks for writing me back Lori. I am taking a shower shortly and I have a 10:15 APPT with my oncologist to review blood workup and report of the biopsy. I still feel like I have a corncob up my but, (sorry to be so graphic!) and everytime I sit, I feel like there is something there that needs to be dispelled. I wish I could meet with you all from this site. Our cancer center has very little anal cancer victims. It does help to get online and go to this site. Thanks about the lung headsup. One of the things that I just can't seem to get over is that I usually want to go everywhere and keep busy. I don't even want to go to work, not that I truly need to. I am a retired teacher, but the excitedness about getting out of bed in the morning is not there. I think the pain pills have a lot to do with my depression. Let me know if this happened to you. I will write back Lori and let you know what Dr. Stanek had to say today. Talk to you soon. Thank you again.
Gladie : )

debbiejeanne

Cathy, I have cerv. cancer
Cathy, I had cerv. cancer years ago but since that I'm not allowed to use hormone due to the fact that they can cause cancer! I would ask the doctor about that before taking any of them. If you have cancer already, what will/can the hormores do (can it make it spread faster or anything?). I don't know but I would certainly ask alot of questions.
I'm sorry you have to go thru this battle and I wish you the very best.
God Bless,
Debbie

z

gladteacher said:

female issues
Thanks for writing me back Lori. I am taking a shower shortly and I have a 10:15 APPT with my oncologist to review blood workup and report of the biopsy. I still feel like I have a corncob up my but, (sorry to be so graphic!) and everytime I sit, I feel like there is something there that needs to be dispelled. I wish I could meet with you all from this site. Our cancer center has very little anal cancer victims. It does help to get online and go to this site. Thanks about the lung headsup. One of the things that I just can't seem to get over is that I usually want to go everywhere and keep busy. I don't even want to go to work, not that I truly need to. I am a retired teacher, but the excitedness about getting out of bed in the morning is not there. I think the pain pills have a lot to do with my depression. Let me know if this happened to you. I will write back Lori and let you know what Dr. Stanek had to say today. Talk to you soon. Thank you again.
Gladie : )

Gladie
Hi Gladie,

I also was easily tired for about 6 months. I too took the pain meds from the 3rd week of radiation on until about a month after tx was completed. I now have my stamina back totally and am better than I was before diagnosis as I have quit smoking for 1 year and 3 weeks, which I'm sure has something to do with it. The something up your bum, I had that feeling also, your healing, that will eventually subside. I hope once your off the pain meds, as those are depressants, you will get your ambition to get up and go back. Make sure you tell your dr how your feeling, he might have some good solutions for you. I wish you well. Lori

pjjenkins

Women's issues
Cathy,

I am sorry you are having problems and you are right- you are not the only one.

I have regular irritation problems in my crotch - mostly skin - and baths help. I invested in a nice but modest whirlpool tub I enjoy.

I just had results from my 2 year post treatment checks and NED. In fact the med oncologist stated that I am "cured". Not sure when metastasis most often occurs but it seems it does happen within the first year or two. I will continue to have 6 month checkups and annual CAT scans until my 5 year anniversary but my doctors say they don't expect anything to come up.

However, I am definitely left with women's issues. No one told me to use dilators and my mate is petrified about radiation (believes his dad's cancer was caused by it and he lost his dad when he was 42 and J was a 12 year old) so by the time he was ready to start up again, I had a fused vagina (7 months after last rad treatment).

The other big complication is that I had suspicious uterine cells at the same time my anal cancer was found and now there is no getting samples of anything. So, I am trying to reopen vagina with dilators (very little progress with this) and am having six month ultrasounds to check uterine wall thickness. The docs agree that the radiation killed off whatever the suspicious cells were but......

I am grateful to be "cured". May you all have that pronouncement eventually!

Meantime,keep after docs with problems until they make sense to you! My radiation oncologist told us at a conference, that radiation does inflict long term damage of various extents for all of us. Ask ask ask ask ask ....

Heartfelt thanks to all of you on this board from me, too! It has made a great deal of difference to me to be able to discuss various aspects of our disease with those who have the same thing... This only happened for me two years after diagnosis.... Thank you, again, Joanne, for starting it for us.

Priscilla

lemonade

pjjenkins said:

Women's issues
Cathy,

I am sorry you are having problems and you are right- you are not the only one.

I have regular irritation problems in my crotch - mostly skin - and baths help. I invested in a nice but modest whirlpool tub I enjoy.

I just had results from my 2 year post treatment checks and NED. In fact the med oncologist stated that I am "cured". Not sure when metastasis most often occurs but it seems it does happen within the first year or two. I will continue to have 6 month checkups and annual CAT scans until my 5 year anniversary but my doctors say they don't expect anything to come up.

However, I am definitely left with women's issues. No one told me to use dilators and my mate is petrified about radiation (believes his dad's cancer was caused by it and he lost his dad when he was 42 and J was a 12 year old) so by the time he was ready to start up again, I had a fused vagina (7 months after last rad treatment).

The other big complication is that I had suspicious uterine cells at the same time my anal cancer was found and now there is no getting samples of anything. So, I am trying to reopen vagina with dilators (very little progress with this) and am having six month ultrasounds to check uterine wall thickness. The docs agree that the radiation killed off whatever the suspicious cells were but......

I am grateful to be "cured". May you all have that pronouncement eventually!

Meantime,keep after docs with problems until they make sense to you! My radiation oncologist told us at a conference, that radiation does inflict long term damage of various extents for all of us. Ask ask ask ask ask ....

Heartfelt thanks to all of you on this board from me, too! It has made a great deal of difference to me to be able to discuss various aspects of our disease with those who have the same thing... This only happened for me two years after diagnosis.... Thank you, again, Joanne, for starting it for us.

Priscilla

women's issues
Hi Priscilla -

My gynecologist prescribed Estrace to use. It is a hormone cream. I insert it at night after I use the dilator. I do this 3X per week. Maybe that will help.

Also, my oncologist just told me the opposite. He said this cancer rarely recurs in the first year. Who knows. Congratulations on the NED.

Barbara

z810840b

lemonade said:

women's issues
Hi Priscilla -

My gynecologist prescribed Estrace to use. It is a hormone cream. I insert it at night after I use the dilator. I do this 3X per week. Maybe that will help.

Also, my oncologist just told me the opposite. He said this cancer rarely recurs in the first year. Who knows. Congratulations on the NED.

Barbara

different information
its amazing the amount of different information out there.My doctors told me if there is a reoccurance..its usually in the first 2 years.Thats why I have to go for checkups every 3months.After that ..it will be longer between visits....alyse

pjjenkins

lemonade said:

women's issues
Hi Priscilla -

My gynecologist prescribed Estrace to use. It is a hormone cream. I insert it at night after I use the dilator. I do this 3X per week. Maybe that will help.

Also, my oncologist just told me the opposite. He said this cancer rarely recurs in the first year. Who knows. Congratulations on the NED.

Barbara

Estrace
Hi Barbara,
What is the Estrace supposed to do to help? I am not at all familiar with it.

Thanks- I feel very very fortunate to have NED... And, as there are so many different stories out there, I know I will worry again as testing time approaches again next year.
Priscilla

mp327

z810840b said:

different information
its amazing the amount of different information out there.My doctors told me if there is a reoccurance..its usually in the first 2 years.Thats why I have to go for checkups every 3months.After that ..it will be longer between visits....alyse

First 2 years
Considering that most patients are followed every 3 months for the first 2 years, then usually every 6 months after that, it would make sense to me that the risk of recurrence is higher during the first 2 years, then goes down. That goes along with most of the info I've read.