Very Young, Treatment starting soon.

kaytie22

I was diagnosed after what was suppose to be a hemorrhoid removal surgery in 2/12. Ended up being warts/tumors. Luckily the tumor ended up only measuring about 5mm but the doctor did not do any sort of "margins". I am scheduled for 6 weeks of radiation plus chemo (2 treatments with Mitomycin and 2 (4day) treatments of 5FU Fluorouracil).

I am 25 years old, just had a baby boy 7 months ago and have also been diagnosed with VIN 3 (Carcinoma in situ of the vulva)... I will be having a vulvectomy for the VIN3 and once healed from that (approx. 1month) I will be starting radiation and chemo.

I guess my main concern is "Am I going to be able to care for my baby".
Were any of your chemo treatments with these drugs? What were your side effects?

mp327

Hi kaytie22--
I do believe you are the youngest person on this board for anal cancer survivors. I'm so sorry you have been diagnosed with anal cancer and also VIN3. The treatment of mitomycin and 5FU, along with the radiation, which is the treatment I received, is standard protocol for anal cancer. While it can be a tough time to get through, many of us here have gotten through it and you will too. The great news is that healing usually happens quickly and life can be quite normal once again afterwards. Some of us have a few lingering side effects, but most are things we can tolerate. As for how you will feel during treatment, there may be nausea, loss of appetite, fatigue, diarrhea, mouth sores, and pain with BM's and urination. However, there are many meds that can be prescribed and also many over the counter items that can help a lot. Your docs will most likely prescribe some things for you prior to your treatment. As for caring for your young son, I would suggest making arrangements with someone who can assist you should you not feel up to it. I had some bad days and can't imagine taking care of a baby while feeling like that. You may not feel too bad, but unfortunately, no one knows how the treatment will affect them until they go through it, so it's best to be prepared for the worst case scenario, but hope for the best! If you have anymore questions, please ask. I hope I have not frightened you--this treatment is totally doable and 6 weeks is a short period of time. You can do this! Please keep us posted. I wish you all the best.

sephie

bless you
yes, i agree that you might need help with your baby because of the side effects therefore, have some help ready, if possible. It is curable and it is doable. good luck and we will help you with questions. Let your vulvar surgery heal up as good as possible. drink or eat lots of protein for healing. we are here for you . hugs and hugs sephie

kaytie22

mp327 said:

Hi kaytie22--
I do believe you are the youngest person on this board for anal cancer survivors. I'm so sorry you have been diagnosed with anal cancer and also VIN3. The treatment of mitomycin and 5FU, along with the radiation, which is the treatment I received, is standard protocol for anal cancer. While it can be a tough time to get through, many of us here have gotten through it and you will too. The great news is that healing usually happens quickly and life can be quite normal once again afterwards. Some of us have a few lingering side effects, but most are things we can tolerate. As for how you will feel during treatment, there may be nausea, loss of appetite, fatigue, diarrhea, mouth sores, and pain with BM's and urination. However, there are many meds that can be prescribed and also many over the counter items that can help a lot. Your docs will most likely prescribe some things for you prior to your treatment. As for caring for your young son, I would suggest making arrangements with someone who can assist you should you not feel up to it. I had some bad days and can't imagine taking care of a baby while feeling like that. You may not feel too bad, but unfortunately, no one knows how the treatment will affect them until they go through it, so it's best to be prepared for the worst case scenario, but hope for the best! If you have anymore questions, please ask. I hope I have not frightened you--this treatment is totally doable and 6 weeks is a short period of time. You can do this! Please keep us posted. I wish you all the best.

Thank you both!
I wrote a whole message and just now realized it didn't actually post. Thank you for responding. Emotionally I've beend doing really well. I have a history of depression and anxiety but thankfully it has not gotten any worse since I got my diagnosis.
I think the thing that is my biggest concern is taking care of my son. I am a SAHM and my fiance works 2 jobs and is not home a whole lot. I do have help from both my mom and my fiance's parents...
Is a porta-cath common for the 5fu? Does it come out once chemo is over?
I've got so many questions but seems like everytime I am at the doctors my mind goes blank. I bought a specific notebook to write questions down and have brought it with me everytime but somehow still end up missing things.
I'm sure I will have a lot more to ask...

MyHopen413

Side effects are different
Side effects are different for everyone. You may have mouth sores, diarrhea and fatigue eventually. Diet can help your diarrhea. Avoid high fiber foods, foods that cause a lot of gas (like broccoli) and limit your milk products. My radiation oncologist had me alternate Lomotil (a prescription drug for diarrhea) and Imodium. For the mouth sores you can rinse your mouth with salt water before you eat. My pharmacist also said there was a concoction he could make with Maalox and other stuff to sooth the sores. My mouth sores only lasted a little over a week. For the fatigue, the best thing you can do is drink a lot of water and other healthy fluids like Gatorade.
It might be a good idea to have a back up plan: like having someone lined up to take care of your baby, making meals ahead and freezing them and maybe finding someone to help with cleaning.
You may not have any side effects, or they could be mild, or they might not last very long. Just hang in there and before you know it you'll be back on your feet. My treatment with radiation and these two chemos is just a distant memory now and it's been less than a year. All my good thoughts with you.

mp327

kaytie22 said:

Thank you both!
I wrote a whole message and just now realized it didn't actually post. Thank you for responding. Emotionally I've beend doing really well. I have a history of depression and anxiety but thankfully it has not gotten any worse since I got my diagnosis.
I think the thing that is my biggest concern is taking care of my son. I am a SAHM and my fiance works 2 jobs and is not home a whole lot. I do have help from both my mom and my fiance's parents...
Is a porta-cath common for the 5fu? Does it come out once chemo is over?
I've got so many questions but seems like everytime I am at the doctors my mind goes blank. I bought a specific notebook to write questions down and have brought it with me everytime but somehow still end up missing things.
I'm sure I will have a lot more to ask...

Hi kaytie--
I'm so glad to hear that you have family members available to help care for your son. Please let them, as it will allow you to get the rest you need and also it will make them feel useful. A port-a-cath is commonly done for delivery of the chemo drugs, as they are very hard on the veins. I had a port and it worked like a charm. Getting one put in is a minor surgical procedure--you'll do fine with that. It will be removed pending approval of your doctor. My doctor allowed mine to be removed about 3 months after treatment ended, but some people keep theirs for a longer time. It varies from doctor to doctor. It's a good idea to write your questions down before going to the doctor. Then you will not forget to ask them. Also, if you can take someone with you to be a second set of ears and jot down the answers, that would be very good. Please take care and keep us posted.

sephie

glad you have help
i do not want to scare you and i was a lot older when i had my biopsy which took tissue off on the outside of anus as well as inside. but it took me 8 weeks to heal before i had chemo and radiation. please heal your vulvar area before radiation. because all tissues do get inflammed and burned from the treatment. everyone is different but i would not have been able to care for anyone else. so i am glad you have help. remember to ask us anything. sephie

kaytie22

sephie said:

glad you have help
i do not want to scare you and i was a lot older when i had my biopsy which took tissue off on the outside of anus as well as inside. but it took me 8 weeks to heal before i had chemo and radiation. please heal your vulvar area before radiation. because all tissues do get inflammed and burned from the treatment. everyone is different but i would not have been able to care for anyone else. so i am glad you have help. remember to ask us anything. sephie

Oh no, you aren't scaring
Oh no, you aren't scaring me. I tend to be a slow healer and also don't handle pain well so I don't rush things often. My doctors have said they would fill out FMLA papers for any of my family members that needs them. I've gotten second opinions and am now dealing with a gyno-oncologist from the University of Minnesota for the VIN3. The first one was a quack and didn't explain ANYTHING to me, just sat there and kept saying so you've been tested for HIV and it's negative. I don't know how many times I told him yes and how many times he looked at the actual test results. Definitely wasn't comfortable with him.

I guess with the HPV the anal cancer has a bigger chance of coming back but the doctors seem confident.

kaytie22

sephie said:

glad you have help
i do not want to scare you and i was a lot older when i had my biopsy which took tissue off on the outside of anus as well as inside. but it took me 8 weeks to heal before i had chemo and radiation. please heal your vulvar area before radiation. because all tissues do get inflammed and burned from the treatment. everyone is different but i would not have been able to care for anyone else. so i am glad you have help. remember to ask us anything. sephie

Oh no, you aren't scaring
Oh no, you aren't scaring me. I tend to be a slow healer and also don't handle pain well so I don't rush things often. My doctors have said they would fill out FMLA papers for any of my family members that needs them. I've gotten second opinions and am now dealing with a gyno-oncologist from the University of Minnesota for the VIN3. The first one was a quack and didn't explain ANYTHING to me, just sat there and kept saying so you've been tested for HIV and it's negative. I don't know how many times I told him yes and how many times he looked at the actual test results. Definitely wasn't comfortable with him.

I guess with the HPV the anal cancer has a bigger chance of coming back but the doctors seem confident.

sephie

kaytie22 said:

Oh no, you aren't scaring
Oh no, you aren't scaring me. I tend to be a slow healer and also don't handle pain well so I don't rush things often. My doctors have said they would fill out FMLA papers for any of my family members that needs them. I've gotten second opinions and am now dealing with a gyno-oncologist from the University of Minnesota for the VIN3. The first one was a quack and didn't explain ANYTHING to me, just sat there and kept saying so you've been tested for HIV and it's negative. I don't know how many times I told him yes and how many times he looked at the actual test results. Definitely wasn't comfortable with him.

I guess with the HPV the anal cancer has a bigger chance of coming back but the doctors seem confident.

docs forget to give dilators
ask your gyno-oncologist to give you dilators to use as soon as possible after the treatments are over. she should know that the vagina closes up due to radiation. many docs forget about this issue. the dilators come in different sizes to help open up the vagina again. it is not hard to use them. (actually Md anderson hospital now puts them in the vagina during radiation but i was able to open my vagina up after all tx was over). i still use it and i will be post tx 3 years in july. forgot to tell you that i had the same tx as you but had a picc line for the chemo. i did not like the picc line. port seems better. sephie

ppaseka

Treatments
My 44 year old wife went through 28 IMRT pelvic radiation treatments for Bartholins gland cancer. She had weekly doses of cisplatin along with the radiation. After radiation, she did three additional chemo treatment using cisplatin once every three weeks. She was also on Xeloda in lieu of 5FU. She tolerated everythig quite well. Her major problem was diarehha. Our doctoral were wonderful treating all of her side effects. They gave her prescriptions for the burns. They gave her a med to numb the urinary tract so the urination wasn't an issue. Make sure you tell them "Every" side effect that you are having no matter how minor it seems to you. They gave her a dilator to use to help with shrinkage, but she did not like using it. We continued to have relations as much as she could even if there wasn't any "motion". We purchased a set of of Dr. Bermans vibrating dilators from Adam and Eve. They have for different sizes and they really helped her relax and insertion wasn't as painful. She girl parts returned to as normal as they can be after radiation and a partial vulvectomy. She did have some tighening and shrinkage but everything is ok now. We are waiting for first scan at the end of June. You can send us a private message and she will answer any questions that she can. One note. She worked every day except chemo day. She went back to work five weeks after surgery. She had not only the vulvectomy, but had nodes removed from both groins and also from around the iliac region of her aorta. She had twenty seven inches of incisions below her waist.

kaytie22

sephie said:

docs forget to give dilators
ask your gyno-oncologist to give you dilators to use as soon as possible after the treatments are over. she should know that the vagina closes up due to radiation. many docs forget about this issue. the dilators come in different sizes to help open up the vagina again. it is not hard to use them. (actually Md anderson hospital now puts them in the vagina during radiation but i was able to open my vagina up after all tx was over). i still use it and i will be post tx 3 years in july. forgot to tell you that i had the same tx as you but had a picc line for the chemo. i did not like the picc line. port seems better. sephie

Oh okay... Good thing to
Oh okay... Good thing to know. I'll write it down in my book to remember to ask at my appointment tomorrow. Does it ever go back to normal? Is it painful at all?

Nervous about the whole port thing, but I guess a picc would be worse.

ppaseka

kaytie22 said:

Oh okay... Good thing to
Oh okay... Good thing to know. I'll write it down in my book to remember to ask at my appointment tomorrow. Does it ever go back to normal? Is it painful at all?

Nervous about the whole port thing, but I guess a picc would be worse.

Normal
Read my post. My wife says it has returned to almost normal. She has all of the feelings she had before. She does however have swelling in the pubic area and her belly from lymphadema due to the loss of so many nodes which causes her discomfort in the evening bit it is ok in the morning.

kaytie22

ppaseka said:

Treatments
My 44 year old wife went through 28 IMRT pelvic radiation treatments for Bartholins gland cancer. She had weekly doses of cisplatin along with the radiation. After radiation, she did three additional chemo treatment using cisplatin once every three weeks. She was also on Xeloda in lieu of 5FU. She tolerated everythig quite well. Her major problem was diarehha. Our doctoral were wonderful treating all of her side effects. They gave her prescriptions for the burns. They gave her a med to numb the urinary tract so the urination wasn't an issue. Make sure you tell them "Every" side effect that you are having no matter how minor it seems to you. They gave her a dilator to use to help with shrinkage, but she did not like using it. We continued to have relations as much as she could even if there wasn't any "motion". We purchased a set of of Dr. Bermans vibrating dilators from Adam and Eve. They have for different sizes and they really helped her relax and insertion wasn't as painful. She girl parts returned to as normal as they can be after radiation and a partial vulvectomy. She did have some tighening and shrinkage but everything is ok now. We are waiting for first scan at the end of June. You can send us a private message and she will answer any questions that she can. One note. She worked every day except chemo day. She went back to work five weeks after surgery. She had not only the vulvectomy, but had nodes removed from both groins and also from around the iliac region of her aorta. She had twenty seven inches of incisions below her waist.

Thank you very much. I
Thank you very much. I haven't even had my surgery yet. Probably next week... and I believe I will be having a simple vulvectomy. How long after surgery did your wife start radiation/chemo?

I hope her scans in June are clear!
-Kaytie

ppaseka

kaytie22 said:

Thank you very much. I
Thank you very much. I haven't even had my surgery yet. Probably next week... and I believe I will be having a simple vulvectomy. How long after surgery did your wife start radiation/chemo?

I hope her scans in June are clear!
-Kaytie

Treatments
She had surgery on Nov. 8 and we started radiation and chemo on Dec. 27. It was a tough decision because of our kids were on Christmas vacation, but since we had met out maximum out of pocket expenses, we got in what we could before we started our deductables again. Of course, that only took 27 days to meet the max again....good luck with your treatments. Like I said, don't hesitate to ask us questions.

horsepad

treatment
I was diagnosed with anal cancer, stage 4 last August. It had spread to my lymph nodes and liver. I had the same chemo/radiation plan as yours. Also had a port that doctors will take out in August. I am now in total remission. I also feel you may need help with the baby. I have 2 grandchildren I am raising and if it weren't for my husband, I could not have done it. I was hospitalized because of severe burns from radiation, low blood counts, low pottasium etc. I also had nasea, mouth sores, pain when trying to have a bm. I had severe diarreah and a cathetor put in for a month because I couldn't pee from radiation. That caused alot of problems with uti's. I had surgery on liver in February. It is true, you will heal and feel normal again. My husband passed in November and I have been taking care of grandchildren alone ever since and it hasn't been a problem. I feel great! I am doing alot of physical work, ie taking care of farm, horses, ducks, cats, dog. Doing alot of yard work. Even during my treatment, all issues were addressed and handled. It sounds worse than I felt during the time. Good luck to you.

MyHopen413

kaytie22 said:

Oh okay... Good thing to
Oh okay... Good thing to know. I'll write it down in my book to remember to ask at my appointment tomorrow. Does it ever go back to normal? Is it painful at all?

Nervous about the whole port thing, but I guess a picc would be worse.

I've had both a port and a
I've had both a port and a pic. The pic line is really inconvenient because you can't get it wet. With the port you can bathe or shower unless it is accessed (meaning it has a line in to deliver IV medicines). You can have a port for a long time it just has to be flushed periodically to keep it open. To get a port is minor surgery. My port has really made my chemo a lot easier.
Thinking about you and wishing you the best.

ppaseka

kaytie22 said:

Oh okay... Good thing to
Oh okay... Good thing to know. I'll write it down in my book to remember to ask at my appointment tomorrow. Does it ever go back to normal? Is it painful at all?

Nervous about the whole port thing, but I guess a picc would be worse.

Port
My wife has a port. She plans on keeping it until we have a couple clear scans. It is almost "maintenance free" other than monthly flushing. Her doctor says she can jeep it almost indefinitely as long it doesn't cause any problems.