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Topic: sick and tired of being sick and tired

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Mar 13, 2008 02:23AM - edited Mar 13, 2008 02:30AM by mustangsally

mustangsally wrote:

It's 2 am and instead of sleeping I'm doing more research.  I'm 40 and found a lump in my breast to add to the one I've had for 10 years (dr's then said it was a common cyst) the new one was a high risk lesion and the old one turned out to be a tumor. (go figure) I had them both removed Jan 25th. Now I'm concidered high risk. Because of the lab results and my age and the fact that I am premenopausal it was recommended I do the BRCA test.  I did that two weeks ago after much thought. Now I wait. I'm not concerned so much about myself as I am for my two daughters 18 and 19. (And after I did the test my only other family member, my sister told me she is already BRCA1+! She'll talk your ear off for 40 mins on the phone about the traffic but this info was only shared last week!)

Anyway my doctor is suggesting I be placed on tamoxifen which will sent me into immediate menopause at the age of 40. EEK! I know I can't have children as I had an endrometrial ablation to cauterize the lining of my uterus to stop excessive bleeding. Does anyone know how my uterus will react to this med with my history of endrometrial issues?  If I'm + I may concider taking the ovaries and uterus out but right now I've thought about it so much that I'm being stubborn and not wanting any part of anything including the meds.  (Sorry just frustrated and sick and tired of being sick and tired)

MS

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Mar 13, 2008 10:05AM - edited Mar 13, 2008 11:31AM by Bren-2007

Hi Mustang,

Sick and tired of being sick and tired ... you've come to the right place.  Once diagnosed as high risk, or with cancer, it seems we're on an endless go round of doctors visits, treatments, decisions to be made and possible side-effects from whatever treatment we have, and endless obsessive researching of every little thing. 

Do you have a copy of your pathology report?  By high risk, do you have LCIS or atypical cells?  If your doctor is suggesting Tamoxifen, there must be a reason for it. Tamoxifen blocks estrogen from getting to your breast cells.  It's used for premenopausal women with estrogen receptor-positive atypical cells or cancer cells.  With your history of uterine issues, your gyno will need to monitor you regularly while taking Tamoxifen. 

Hopefully you'll have the results of BRACA test soon.

If you decide on a total hysterectomy ... yup .. instant menopause!  It sucks.  It's taken me a year post diagnosis and treatment to get my head around this new way of living with instant menopause, breast cancer and all the changes that came with it.

I'm glad you found this site.  You'll find lots of support here.  Please keep writing and let us know how you are and what's next for you.

You're in my thoughts,

BGirl

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Mar 13, 2008 01:09PM - edited Sep 6, 2010 07:56PM by yellowrose

This Post was deleted by yellowrose.
You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived though this horror. I can take the next thing that comes along.' Eleanor Roosevelt
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Mar 13, 2008 03:03PM mustangsally wrote:

Thank you both for responding.  I felt bad after I sent it because I try hard to be positive all the time but I haven't slept in over a week and I'm just tired.  I'm glad on this site support actually means support. There is a lot to be said for that.

I don't have a copy of my pathology report and didn't know I needed it until recently.  It would clear up a lot.  Basically the surgeon said the high risk lesion was atypical ductal carsonoma in situ but said both the tumor and precancerous lesion was sucessfully removed.  But have you ever left a conversation with someone feeling like you don't have the whole story? I'm hoping the oncologist give me a lot of information.

Since I don't know my family history other than one sister I am recording everything for my girls. Family history is started now for them so they don't go into something like this blind in their future.

Thanks again for responding. There is nothing worse than the chat rooms where you put it all out there and no responds to your concerns. Or they tell you ,you are just high risk....when you have cancer you'll have something to whine about. I actually saw someone respond to someone elses post that way on another web and I never went back.  Glad to be here finally.

MS

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Mar 13, 2008 03:09PM mtbmom wrote:

Hey Mustang- Boy can I relate with you! I am 47. The past 4 mos I've gone through Mris, mammos, ultrasounds, and a needle biopsy, an excisional biopsy and lumpectomy, and a visit to the onc this past mon.  I have a strong family history, as well as very dense fibrous breast tissue, plus started my period at age 10.  I have also had suspicious spots for the past 5 years on my mammos, and had a needle biopsy last year.  UGH!  I did the BRCA test last dec(2006), and it came back neg, but here I am now and I have microcalc groupings that came back as LCIS.  The onc put me on Tamoxifen too.  I just started yesterday, and am waiting to see just how bad the side affects will be. One thing I seem to feel today is just fuzzy headed, so if I ramble, forgive me! 

Has your doc said anything about seeing an oncologist, or is he one? That is who will be monitoring me while I take tamoxifen, as well as my GYN and the Dr.who's head of the breast clinic I go to(she did all my needle biopsies and tests).  He is also sending me to his main hospital for an inter-uterine ultra sound-I've had a couple of off pap smears as well as ovarian cysts, and ovarian cancer runs in my family as well.

I have found lots of answers by looking through the other forums-It's amazing the info and how helpful everyone here is!!  There is also a good commentary on the side effects of tamoxifen here.

Good luck to you-and know you have everyone here behind you!

Dx 2/18/2008, LCIS, 2cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Mar 16, 2008 12:00PM mustangsally wrote:

I go to see an Oncologist on the 19th. I have additional mammogram and ultrasound on the 26th but i'm thinking since the mri looksed good these will also.  Then if my BRCA test comes back positive I'll see a genetic counselor on the 28th. Hoping that comes back by the end of the month and is negative of course.

I'm really worried about the tamoxifen. The more I read and hear peoples reactions to it the more I don't want to take it. My gyn calls me her 2%. If there is a 2% chance of a reaction to meds or sugery I get it.  My general surgeon said the same thing and I laughed til I cried. 

Anyway thanks for the uplifting messages. I read them often to remind me I'm not alone. I also hope you all are doing well.

hugs to all

ms

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Mar 16, 2008 12:34PM mtbmom wrote:

mustang- good luck with the onc on the 19th.  Let us know how it goes.  I think for me, that was the scariest appt of all!  He was very patient and full of info, but just being there was unnerving!  My thoughts will be with you on that day, and good luck with the mammo and ultrasound!  May you be BRCA-!!! hugs- Denise

Dx 2/18/2008, LCIS, 2cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Mar 16, 2008 01:07PM leaf wrote:

No, mustang, you are not alone in this journey. My LCIS is about the 4th 'unusual' disease I have had.

Do what is right for YOU with all your decisions. You are the one who knows yourself better than anyone else.


However, if you count the number of posts where people have complained about tamoxifen, that will probably NOT be representative of the general population.The people who have no problems with tamoxifen are likely not to post anything.


This does NOT mean I am pushing you for or against tamoxifen. There is no huge hurry to make your decision either. Wait until you have all your tests, and get all the opinions you need before you make the choice that is best for you.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 16, 2008 01:27PM otter wrote:

mustangsally,

No need to apologize.  If there is anywhere that you don't have to try to be positive all the time, it's on these BCO boards.

We have all been through the cancer mill, one way or another, whether it was waiting an interminably long time for results, or being told a lump was probably cancer and having it turn out to be benign (or vice versa), or not being given enough information to make an informed decision, or just being terribly, terribly afraid.

Many of us have found that "positive thinking" is highly over-rated when it comes to dealing with BC.  Sometimes the best therapy is to huddle up in your favorite chair under a warm blanket and have a good cry.  Other times, you'll find quick relief if you post to this board, 'cause a sympathetic crowd will rally to your defense every time.

Sick and tired of being sick and tired?  Yup.  We would all like to get off this roller coaster.

otter 

Dx 2008, IDC, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Mar 16, 2008 05:10PM - edited Mar 16, 2008 05:10PM by HeatherBLocklear

Dear Mustang,

Yep, I think you've pretty much summed it up for all of us. We're all sick and tired of being sick and tired --------- and scared. Especially scared.

I dreamt last night I fished the tumor out of my boob and threw it on the floor where it lay pulsating in all its ugly, black, hairy horror, and STOMPED on it until it stopped crawling and wiggling. "I don't want to have cancer anymore," I said. "I'm done with cancer; everyone can go home now."

Wouldn't it be nice if it were as easy as that. Keep thinking "recover, recover, recovery, recover."

Hugs,

Annie

PS: Boy, do I love a woman who doesn't forget the apostrophe in front of 'cause.

Annie Camel Tail Dx 2/23/2008, IDC, Stage IV, mets, ER-/PR-, HER2-

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