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Female issues - Questions for the gals on the board

cbs6931's picture
cbs6931
Posts: 63
Joined: Mar 2010

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's picture
mp327
Posts: 2901
Joined: Jan 2010

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's picture
z
Posts: 1251
Joined: May 2009

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's picture
lizdeli
Posts: 521
Joined: Jul 2009

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

nvrimgnd
Posts: 1
Joined: Jun 2010

Hi Liz ~ I am very new to this site..not sure how to navigated it yet..but while reading thru the posts, I caught your mention of your radiologist using a "protector" of sorts. May I ask what was used??? Thank you.. K~

gladteacher
Posts: 9
Joined: Feb 2010

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
Posts: 62
Joined: Feb 2010

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

cbs6931's picture
cbs6931
Posts: 63
Joined: Mar 2010

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

z's picture
z
Posts: 1251
Joined: May 2009

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

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

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

z's picture
z
Posts: 1251
Joined: May 2009

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
Posts: 9
Joined: Feb 2010

Hi Joanne and Lori,
I just wanted you both to know that I saw my oncologist last Thursday with the results of the biopsy the week before and blood workup. I have lupus (SLE) and Sjogren's Syndrome which are autoimmune disorders. My blood was really messed up. My sed rates have gone way up, and white cell count down from the last blood draw, which means my immune system is kind of whacky right now. My oncologist had told me he wanted to wait on going to see a thoractic surgeon in Mesa, AZ, but because of the latest PET scan he feels it is very necessary to have a lung biopsy as soon as possible. The lymph glands are lit up on the PET scan, but the middle of the lungs and fine. My oxygenation levels are around 98 to 100 which is good. I think I get out of breath due to lack of exercise. I see my colorectal surgeon tomorrow to get a pass to go back to the gym. I have dropped 35 pounds and want to lose around 50 more. My hair Joanne, was your beautiful red color and shoulder length before losing it. Now it is salt and pepper (very short) and weird. The top is straight, the sides kind of look like brillo pads and the back is very think and dark grey. My pubic hair has grown in too in reddish brown. Go figure. I have to laugh at all the changes in my appearance these days. I still feel that there is always something in my anal tract that has to be dispelled. I take Miralax every morning and stool softeners. There is still pain by the anal opening, and weirdly I get sharp pains radiation out from the anus. I guess my nerve endings are coming back to life. I am very emotional and my oncologist thinks at times I need to see a psychiatrist, but I think the main problems in the oxycodone is affecting my emotions. I cry very easily. Normally I am very strong and in control. I guess this is normal. I am so glad I found this website because it does help to vent. I see my colorectal surgeon and am going to ask her if I can swim. I live in Casa Grande, AZ and it is getting rather warm these days. You both have been so kind to answer me when I post. I don't mean to be whiny. Lord knows, I was a teacher for 36 years and I had a price list for whiners! Haha/Do you both every have a lack of motivation? Sometimes, I still just want to go to bed and sleep. It hurts to sit for long periods of time. I ended treatments the 19th of January and the healing seems so slow at times. Well, ladies, may buy that vaginal dilator that my oncologist suggested. I currently am not seeing anyone romantically, but a girl has to be prepared. The radiation has kind of done a number on my vagina. I will have to ask about the vaginal cream too. Thanks for being there for me, and listen to me go on and on. One of these days, you will see my sense of humor. Gladie (Gladteacher)

z's picture
z
Posts: 1251
Joined: May 2009

Hi Gladie,

Thank you for letting us know whats going on. It took me a long time to get my energy back, so be patient. I hope you get your lung biopsy soon and it just shows inflamation. Because you have the autoimmune disorders could there be more inflamation than a person without autoimmune disorders showing up in your pet scan? The lack of motivation I think coinsides with the healing of our bodies and all our energy is put forth that part of our bodies and not our emotional side. Also the pain meds are despressants that can really play a number on your well being, you have to wean off of those. Just give your body time to heal from the tx you have been through. I had sharp pains via my anus at times also, another healing process, that our canal has to go through. I pray for only the best outcome for you. Just remember it takes time and that I too have experienced the same type of side effects that you are experiencing. I wish you well. Lori

gladteacher
Posts: 9
Joined: Feb 2010

Thank you Lori for your support. I see my surgeon tomorrow instead of THursday, so I will ask for a different kind of pain reliever than Percoset. I could cope better if the pain would go away, but I think the autoimmune diseases I have is a double whammy. I am a tough ole' lady of 58 and I will be here as long as I fulfill what God wants me to do. I will keep you updated on what is going on. I get a kick out of the physicians and the medical community. They say "It will take time"/ Well, when you are recovering from a disease, time seems to stop still. I have never been so inactive in my lifetime as now, and when you have nothing but time, it can do a number on your physical and mental state. I am asking permission to exercise and go from there. As for teaching, I should be ready to sub next fall. Again, thank you for your support. I appreciate it so much. Glad : )

gladteacher
Posts: 9
Joined: Feb 2010

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 : )

z's picture
z
Posts: 1251
Joined: May 2009

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

cbs6931's picture
cbs6931
Posts: 63
Joined: Mar 2010

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

lisa09
Posts: 32
Joined: Jun 2010

Hi Gladie,

Hang in there, it gets better with time. I finished treatment in July of last year. The diarrhea gets better and you will become a little more regular, although it's still not the same. Please use the dilators - my oncologist didn't seem too concerned at the time, but my gynecologist was. He had a patient that is no longer able to have intercourse because of the stenosis. I used them faithfully after treatment and have had no problems.

Lisa09

alis7910
Posts: 80
Joined: Jun 2010

Cathy:
I found out I had vaginal adhesions- the doctor removed them in the office, but told me they would come back. Also he told me that the vagina narrows permenently. he also advised using dilators.
I hope this ahs improved for you. The fact that it takes so long to heal is challenging, but you have to know things will get better.

cbs6931's picture
cbs6931
Posts: 63
Joined: Mar 2010

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's picture
cbs6931
Posts: 63
Joined: Mar 2010

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

debbiejeanne's picture
debbiejeanne
Posts: 2398
Joined: Jan 2010

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

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

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
Posts: 62
Joined: Feb 2010

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's picture
z810840b
Posts: 212
Joined: Jan 2010

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

mp327's picture
mp327
Posts: 2901
Joined: Jan 2010

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.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

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

lemonade
Posts: 62
Joined: Feb 2010

It is a hormone cream that is inserted with an applicator similar to the applicators used for yeast infection creams. The dosage I use is 2 grams. It is a little smaller than a tampon. I had shrinkage in my vagina and the gynecologist said that the hormone cream would help to "soften up" the tissue to make it more pliable and enable it to stretch more easily. I'm not using the technical terms he used, but that is the idea.

The info sheet that came with cream said it could cause cancer and I asked my oncologist about it. He said not to worry about it. That seems rather contradictory to me, so I'll just worry about something else instead. Every little ache and pain makes me wonder. The latest thing I'm concerned about is the swelling in my left ankle. They found cancer in my left lymph node in July 2009 before treatment. My oncologist said my lymph channels were probably damaged due to the chemo.

Hope that works for you.

Barbara

z's picture
z
Posts: 1251
Joined: May 2009

Hi Barbara,

I was also prescribed estrace, it has helped immensly. I was prescribed 1 gram 7x a week, for 2 weeks and now 3x a week periodically, when I feel I need it. My PA said to use the cream on the outside of my anal area, as this will help with healing also. I have noticed great improvement. But it saying it may cause cancer is unsettling. I have read by other posters that the pill form of estrogen with a history of breast cancer, is not good. I will talk to my PA again at my follow up to see what the incidence for cancer is with the cream. I wonder if its a blanket warning for all hormone treatments? I will see. I wish you well. Lori

cbs6931's picture
cbs6931
Posts: 63
Joined: Mar 2010

I received a prescription for Estrace also, same dosage, but she wants me to use it every day for 2 months. In addition, she prescribed progesteron (spelling?) in pill form every other day. (Had a valid reason,I just can't remember it now, too much swimming around in the head) Did you get progesteron as well or just the estrace cream?

Thanks!,

Cathy

z's picture
z
Posts: 1251
Joined: May 2009

Hi Cathy,

I was just rx the cream. I completed tx on 6-30-09, and didn't go to the gyno until 4-10. So since your just out of tx, that might be why the difference in the dosage and additional hormone pill. I will find out more on my re check. Lori

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

I was prescribed Estrace as well. 2 times a week 1/2 gram. Radiologist said it would be okay because it's not the same as putting estrogen into the bloodstream and the dosage is low. I went to gyno 6 months post treatment.
Liz

alis7910
Posts: 80
Joined: Jun 2010

Hi Cathy:
Although I have not had the complication you have had,what showed up for me was inflamation of the bowel and acute vaginal burning, months after radiation. My radiation oncologist asked me what I would have done, if I had known about these while i was still undergoing radiation, and i realized i would not have been able to handle it. it is difficult when one thinks the healing process is advancing. I do hope you are better now.

sherinc
Posts: 6
Joined: May 2010

dear cathy,
I am 1 treatment away from the end. I too have the type of bumps you have described and what I believe is a cyst beside the area where the external portion of my tumor was the tweener as I call it. It is painful as is all of this. I do not have a discharge. what if anything have you learned about these bumps?
Thanks

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