possible tamoxifen side effect? in pain...

[tina7]

Hi,  this is so embarasing.....

I started to take tamoxifen about two and a half weeks ago. The first week I started, it just happened to be the week of my period, which did not last very long.  Now two and and half weeks have gone by, I am experiencing burning sensation in the vagina as well as some pain, possible dryness as well.  I am 48 years of age.  Is this just coincidental or a definite side effect from the Tamoxifen?  Maybe others have experienced this?  What can I do to alleviate this horrible feeling?

Also, I had extensive DCIS (grade 3) in the left breast with a small amount of LCIS in the right breast.  Had a double mastecomy, my first pathology came back no invasive component, as well as no lymph node involvement. Margins indicate "less than 2mm", as a result the oncologist wants to re-run the pathology report to get an exact margin.  If less than 2mm she wants me to have  5 1/2 weeks of radiation.  Is this really necessary for DCIS?

Thanks so much.

[japdip]

What you describe are symptoms of Tamoxifen side effects.

Since you had bilat. mastectomies I doubt that clean margins were not obrtained but I suppose it might be possible if the chest wall were involved. If this is true then Radiation would certainly be recommended.
Regards ...

[tina7]

Thank you ever so much for your response.  Is there anything I can do to alleviate these symptoms? I have been bathing 3 times a day as that is what temporarily soothes it.

With respect to the margins, my extensive dcis was on the lower quadrant, Im not sure would that affect the chest wall?

Again, I am so sorry to be a pest and a bother, but do thank you for your response and help.

[tina7]

Sorry, I had one more question I forgot to ask.  What are considered safe margins?  I have read anywhere from 1 to 2 mm, as well as only 2mm and up?  So much different information.

Again, I apologize for being a pest and thank you.

[SueYoung55]

Tina,
Those are for sure side effects of Tamoxifen. You do NOT want to use soap there three times a day! You may want to get some Cetaphil for washing your bottom end no more than once a day. Nothing with perfumes or deodorant type body washes or soap. Water isn't going to hurt you but don't dry it out further. Also, stay away from "baby type wipes" and again, be gentle as you can actually tear yourself. If the side effects get to be too much, talk with your oncologist or gyn to get help.

best wishes

[tina7]

Hi Sue

Thanks so much for your response.  I will talk to the doctor on Monday as I have an appt. to see him then.  In the meantime do you know of hand if these symptoms subside? and because I am 48 does it mean that it will throw me directly into menopause? as I thought this is also a symptom of menopause.

Thanks so much for your help.  

Tina

[SueYoung55]

When you look up side effects of menopause, and then look up side effects of tamoxifen, you are looking at carbon copy images. The exception to that is tamoxifen does come with slight risk of cancer and blood clots. I went through chemo which also causes some of these side effects. My oncologist agreed that tamoxifen is equal to chemical castration. It blocks estrogen which is one of the things that keeps you lubricated, flexible etc.

Even though I have not had a period in over a year from chemo, my FSH levels still show I am not menopausal. Imagine that, and I'm on tamoxifen too.
Best wishes

[tina7]

Again, thank you so much for the valuable info.  I will look it up to compare.  Does this mean that these symptoms  stay and do not go away until you go off of tamoxifen?  Do you still have these uncomfortable symptoms as well?  

Embarassing as it is, I was thinking of picking up some lubricant jelly from the drug store to help alleviate the burning etc.  Would this be harmful?  

I am so sorry to bombard you with all these questions, and am so grateful that are able to give me such valuable info.  If you dont mind me asking - how long ago were you diagnosed?

[SueYoung55]

The side effects will most likely remain while on the tamoxifen. I've been on it for 8 months and have had serious side effects from it. BUT, I will stay on it because the options are crippling to me and this I can deal with.

I was diagnosed Jan 08, stage 3 invasive lobular carcinoma, 10 cm mass, two nodes involved, radical mastectomy after 4 chemo treatments, then 4 more chemo treatments, then rads. They took half of my chest muscle with the mast. I finished all of my treatments Sept 30, 2008. I had DIEP reconstruction in May of this year along with a prophylactic mastectomy of left breast. Two masses in it at time of mastectomy but had clear pathology! Woo Hoo!

I have found luck with KY liquibeads every 3 days. Available in the grocery, easy to use. What I like is you insert it and it lubricates you but doesn't make a pest of itself.

Yes I do still have the side effects but I'm alive and happy.

best wishes :)

[tina7]

I am so sorry to hear your diagnosis, but am happy that your pathology turned out to be clear in your other breast.  You must be a strong person to have sustained all of that, my heart and prayers definitely go out to you.  I can't tell you how grateful I am to receive your valuable advice.  Since I have been living through this, and although I have support, I feel very alone and depressed alot of the time.  Earlier this year my sister and I both had our first mammogram, and we were  both diagnosed back to back.  She has stage 2B invasive carcinoma, and I had the extensive DCIS (12 cm lower quadrant and scattered throughout the upper quadrant) in the left breast as well as LCIS in the right breast. I was lucky the nodes were clear.  I had a double mastecomy in June.  My margins were just under 2mm so the oncologist is rerunning the pathology report to verify the exact margin size,  She is recommending 6 weeks of rads based on the exact margin size from the second pathology report.  

Again, thank you so much.  My prayers are with you.

[katarina777]

Tina, I had this problem especially 'badly' in the beginning and it did get better after the first few weeks.

Also, as SueYoung44 says, no soap at all down there. Buy a soap substitute, like EVE makes one also.

You don't have to apologize for anything, tina. That's what this forum is for.

[katarina777]

Sorry about the 44, SueYoung. i am senile. How bouts you? my short term memory is so bad.

[SueYoung55]

Tina,

Does breast cancer run in your family then besides you and your sister? Have any of the doctors spoken with you about BRCA testing?

My sister and I had cancer at the same time, but different cancers. So many women, TOO many women going through this. Don't feel alone, you for sure have a lot of sisters holding your hands through this journey. If it gets too overwhelming, speak with your oncologist about an anti anxiety med to help you. This is devastating on so many levels, don't be afraid to ask for help!

Katarina,
I don't miss my mind anymore, but I do miss some of the things that were in it :)

[tina7]

This msg is for Sue and Katarina,

Thanks so much to both of you for responding.  I am in alot of pain again "down there" how embarrassing.  Monday I have an appt with my family dr for a pap test and Tuesday an appt with the Oncologist at the Cancer Clinic.  Wednesday, my husband is taking me to Vegas (my favorite place in the whole wide world)  Can't remember the last time I slept well.  

Sue - the Cancer Clinic sent me all these forms to complete to have a genetic test, re BRCA gene etc.  There is no breast cancer in my family, my sister and I are the first.  My Dad had colon cancer, he beat it and my Aunt died at 55 of stomach cancer.  Thats about it.  So all is weird.  This is a mysterious disease.

Katarina, have you been on tamoxifen long?

Tina

[SueYoung55]

Tina,

Is the pain in the vulva area or inside? Your gyn will most likely run some blood work to make sure there aren't any infections present. The good news is your body is processing the tamoxifen properly. The bad news is the side effects can make you miserable. Make sure to make the Dr clear just how uncomfortable you are and they need to discuss options that may be available.

As for the BRCA testing, genetic mutations run to breast cancer, ovarian, uterine, kidney, fallopian tube, colon, pancreatic, brain and melanoma skin cancers, related cancers that tend to run a higher risk in some of the mutations. So your family history may make this test very feasible. More than you just having the test, please ask your oncologist for a recommendation to a BRCA savvy counselor and get some information from them. This is so important. Especially when you get cancer before 50. It's good to find out your risk and to learn what you can do to prevent it, either surgically or surveillance wise. Please research this. If you want to find out more info on it here is a place to start: www.facingourrisk.org where you will see all of the top research going on, different genetic mutations, the most recent information on the latest ASCO conference and trials going on. Don't be afraid to be pro-active with your health. Learn what you don't know to ask your Doctors about.

Best wishes :)

[tina7]

The pain is around the vulva, burning as well as internal where the uterus lies.  I just feel like crying, I am so uncomfortable.  I will see the Dr. on Monday and will have my yearly pap, so he can check it out as well.  I hope this is nothing serious, now I am getting scared again.

Thanks so much for the info regarding the BRCA testing.  I will definitely look into it.  

Are you from the States?  I am from Canada.

Tina

[SueYoung55]

Tina,

Yes, I am in the States, the sunshine state of Florida, where it seems to rain every day lately LOL

Don't get scared. I know a DCIS diagnosis makes you really jumpy and you have every right to feel that way. But the road ahead of you is long and it can be wonderful instead of fearful. Relax and breathe. Try not to worry until you are told or know for a fact you have something to worry about. I was just trying to figure out where the pain was coming from. Your doctor will check you out and the first thing they rule out is infection.

Let me know how your appointments go :)

[Sunny59]

I feel your pain, literally. One of the reasons I am going to the oncologist today is because I am having so much pain and burning "down there". I thought maybe it was a yeast infection so I am trying the medicine. I am a 3 1/2 year survivor and was 45 when I got diagnosed. I did chemo, radiation, and was on tamoxifen for about 2 years when I got a 15cm cyst on my ovary. The surgeon who did my hysterectomy said it was from tamoxifen. So after I recovered from surgery they put me on Aromasin - Holy side effects! I was in constant pain, could hardly move my hands and wrists. I felt like I had to flu all of the time - so I went back on Tamoxifen. If I weren't so scared of a recurrence I would fly without a net but I just can't. My mom was on Tamoxifen for 5 years and didn't have any real side effects - she was 69 when she was diagnosed so she was through menopause and she's not a complainer like me!  I am trying really hard not to let this stuff interfere with my life anymore than I have to. I work out at least 5 days a week to keep myself sane. I lost 33 pounds this year and I do NOT want to gain it back. Being overweight is bad for recurrence too. Good luck - Ellie

[bluebutterfly2222]

Once you have gotten everything checked out by your GYN, another personal lubricant you might want to consider for dryness is Perfect Match, which is 76% aloe vera, nonhormonal, pH-balanced, water soluable, colorless, and odorless. It can be ordered through Miracle of Aloe, 1-800-966-2563, or www.miracleofaloe.com.

They also have a product called Aloe Relief Green Gel which is 96% aloe and can be used on any external area.(I have used it on the vulvar area, as well as for insect bites, and skin irritations such as poison ivy.)  It is described as a very soothing, deep-penetrating, moisturizing gel which is good for burns, sunburns, pain, and itching. (It doe NOT contain Vit E, which is in many of the drug or grocery stores brands, and which is a source of irritaion for some people.) It might also be useful for radiation burns.

(By the way, I have no connection with this company, except for using a variety of their products for about 15 years.)