SInce we''re on the breast cancer topic...

[kbaker]

My mom was diagnosed last December and I was wondering what other fellow PS-ers experiences have been either having a loved on with BC or themselves. The year was SOOO much harder than I anticipated and now I worry about myself having to face the same fate in 20 years from now. BC seems rampant right now.. I have friends and relatives of friends who are battling the disease seemingly at the same time.

Anyone else living this nightmare?

 

[diamondlil]

Yes, So.Cal Girl, I feel faced with this on a daily basis. I''m a medical tanscriptionist, and my primary account is focused on oncology and radiation. I have a good friend who had a double mastectomy in her late 20s (cancer free for over 10 years now), and my mother is also a survivor. I often wonder when and if my time will come.

I do try to keep things in perspective, and sometimes it''s very hard. When my mother was diagosed with breast cancer 2 years ago, all my knowledge came flooding into my head. In trying to help her realize her options, I began spewing treatment statistics -- not a good thing for a person who is already on edge and overwhelmed with such an awful diagnosis. Thankfully, my mom came through it all (surgery, chemo, and radiation) like a tropper. She goes in for testing routinely to make sure there is no recurrence, all the while I hear that little clock ticking in the back of my head.

 

[kbaker]

I''m glad to hear that your mom is doing so well. I do hear alot of long term survivors...My mom had the same treatment: surgery, chemo and radiation. My mom is currently on tamoxafin and is experiencing a great deal of side effects still. I guess I just thought this would "pass" faster than it did. Despite her excellent long term prognosis, She still has joint pain that is unbearable at times and I feel so sad for her.

 

[treysar]

I will say a prayer for your Mom!

A friend of mine will be going on year 7 breast cancer free!!!
Ya know what we do to be supportive?

Every year we go with her, her husband and kids, her parents, her husbands parents, her sister, and her friends and we do the Komen walk in NJ. It is so CATHARTIC and THERAPEUTIC - So many peopel are there who are survivors, who are gonig thorugh it , who have lost loved ones, and everyone rights people''s names on their back to show who thye are supporting.

It is SO FUN and a GREAT was to support her!

 

[diamondlil]

Date: 12/28/2005 11:30:02 AM
Author: So.Cal Girl
I''m glad to hear that your mom is doing so well. I do hear alot of long term survivors...My mom had the same treatment: surgery, chemo and radiation. My mom is currently on tamoxafin and is experiencing a great deal of side effects still. I guess I just thought this would ''pass'' faster than it did. Despite her excellent long term prognosis, She still has joint pain that is unbearable at times and I feel so sad for her.

I know exactly what you are saying, SCG. My mom is on tamoxifen too, and thankfully, she has few side effects other than the hot flashes, which are tolerable. There are a few newer medications on the market that may be an alternative for your mom, each with their benefits and negative side effects of course. Have any alternatives been mentioned to your mom?

The joint pain is another issue altogether. My mom has had rheumatoid arthritis for about 30 years. It was well controlled with medication and exercise . . . until chemotherapy. She has now been diagnosed with polymyalgia rheumatica which is like RA only 10X the pain. Doctors will not say for sure that this condition is a result of the chemo, but it''s what I believe. To me, it makes sense, but I''m no doctor. Unfortunately, the treatment that works best for PMR is long-term steroid (prednisone) usage which also has its awful effects. Attempts to decrease the dosage and eventually stop the prednisone have not gone well.

A few months back, my mom went to a new rheumatologist who added the use of Enbrel which has brought her great relief. She continues to exercise and swears that if she keeps moving, the pain is decreased. She is determined to stay fit and active and can seriously run circles around me. Who knows what the future will bring, but for now she''ll just "keep on moving."

Treysar, you are a good friend for participating in the Koman breast cancer walk. My mom, who lives in Florida, has also participated with her friends, and she has also joined a breast cancer support group. I can tell from talking to her that these things have helped her emotionally to deal with her cancer.

 

[Angel7]

My mom got cancer the first time when I was in 6th grade. After a mastectomy she got it again on the other breast about 5-6 years later. It was tougher the last time, she had to get a bone marrow transplant and it was the hardest thing I''ve ever done, watching her in so much pain. She unfortunatley passed in 1996 and it will be 10 years this March. It is still sometimes hard to believe that I am 26 years old and have been without a mom for 10 years. I can''t help but wonder, if I have kids, will they have the same fate as I did? Growing up without a mom? It''s scary to stop and think that but I constantly do. I always tell myself I''m going to die young, as if it''s my destiny or something. Can''t help but think that way. Every time I go to the doc she reminds me that I am the one with the highest risk!

B. Cancer and all cancers suck and I wish we could abolish them all!

So Cal-Your mom sounds like she''s headed for a clean bill of luck. Best of luck to her and to all of us! (Hope my story wasnt'' a downer to anyone)

Treysar-The walk is a great idea. I hope to do that one of these days!

 

[Kaleigh]

My prayers are with your mom as well. My grandmother, who is 94 was diagnosed with BC when she was 40. She had a mastectomy. She is ill now but certainly not from BC. My mom never had it. I get checked yearly. I feel like I''ll be the one to get it. Scares me big time.

 

[AChiOAlumna]

My mom was diagnosed as well about 5 years ago. She was lucky that they caught it early and she was able to get through with a lumpectomy. She''s been on Tomoxifen also for the last 5 years and has had a clean bill of health since. I''ve been getting a digital mammogram every year since my 35th birthday, which is supposed to be more thorough than an X-ray mammogram (maybe someone else can differentiate between the two).

So.Cal girl...sorry to hear about your mom, but it sounds like she''s on a positive road.

Angel7...so sorry to hear about your mom as well. That is scary that you were so young when she lost her battle, but it sounds like you''ve had a great support system to get you through the last 10 years...my condolences.

 

[kbaker]

Thanks for the support everyone. I participated in the breast cancer 3-day(www.the3day.org) this past October in San Diego. It involved walking 60 miles during the course of three days and raising a minimum of 2100.00 for breast cancer research. It was a powerful experience and I am so glad that I did it, but it was awfully hard on my body-and I''m only 28!!

back to the joint pain...I swear it''s from the chemo. She has pain in all her body parts and she seems only to get relief from soaking in a tub and exercising. I am just disappointed that this isn''t "all over". I think she is too. It has consumed almost one year of her life now..the pain, all the dr.''s appointments etc. She has done a great job pushing those things aside as much as she can, but you can only do that up until a point.

She is heading out to my house in CA tomorrow and she is planning to celebrate New Years'' with us. It will be good for us to be all together.

I hear what your saying Angel7. I want to forget all of this, but in the back of my mind, I always think "What if I''m next, am I leading the life I want to live? I would hate to leave kids behind etc. The whole thing has just shook my sense of stability. My mom was only 49 at age of diagnosis.

 

[Angel7]

Has anyone ever thought about getting that gene testing? I forgot the exact name of it the test but my doctor recc it and I decided against it. (Brac or something like that?) What''s the point? Say I find out I have the gene that carries b.c., doesn''t neccesarily mean I''ll get it but then again, I''ll leave in fear every day of my life (even more than now) lets say I test negative for it, it still doesn''t mean that I won''t get it. I just don''t see the point. What age did everyone start getting mammograms? I still haven''t gotten one and I think it''s time. http://www.smileycentral.com/?partner=ZSzeb001_ZNxmk788BXUS

 

[Kaleigh]

Angel,
I am sooo sorry about your mom. That is so hard to be without her I''m sure. They say time heals, but I''m sure you miss her tons. I''m not getting the testing. It''s just not for me. I feel like I get checked yearly and hope that if I do get it, it will be caught early.

 

[kbaker]

I also decided against the testing in my situation. EIther way, at bare minimum, I have a 1 out of 7 chance of getting BC, so it''s not like the $3000.00 test will ease my mind in the end. Plus, it has insurance and job implications etc. not to mention the psychological implications of it. Not realy worth it for me personally. However, if I had a HUGE family history of both BC and Ovarian, I might consider it. Studies are showing a less than 3% cancer rate (lifetime) in those who chose double massectomies as prevention.

As for monitoring, my Drs. recommended getting my first mammogram at 30 along with a MRI (to get a baseline) then every two years after that until 35, then every year. Up until I reach 30, they advise clinical breast exams by a breast specialist twice yearly.
SInce I''m 28, I am defintlly holding off on the imaging until then. No reason to expose myself to unnecessary radiation etc.

I am trying to look positively and say " At least I will be BETTER monitored than alot of other people and they can heopfully catch it early if it does happen. The people who seem worse off are those really young patients who were 32 at age of diagnosis and weren''t getting detected because of "lack of family history." It really only makes me feel a little better!!

 

[diamondlil]

The testing is BRCA gene testing. I did not have it either. I don''t think that it will ease my mind.

When I was 24, I found a lump. I had only been married for a couple years, no kids. My doctor and I watched it for a few months, but when it did not go away, I was sent for my first mammogram and ultrasound. The mass did not show on either test, but both the doctor and I could feel it. I decided to have it biopsied since I was so afraid of ignoring it. Thankfully, it turned out to be nothing (fatty tissue), and I''ve been fine ever since. Because of that incident, I had my next (baseline) mammogram at 35, and I''ve had one every year since.

A couple of years ago, shortly after my mother was diagnosed, I had a mammogram and was called back for spot compresion views (Yowie!). The radiologist saw something suspicious, and wanted to make sure it was nothing. Thankfully, it was nothing, but the anxiety of it all was awful.

 

[Angel7]

I''m glad it was nothing Diamond Lil

 

[HOUMedGal]

Both my mother and my grandmother are survivors as well! My mom was diagnosed at age 39...had a lumpectomy, chemo, radiation, and 5 years of tamoxifen. As of earlier this month, she''s been cancer free for 14 years. I thank God every day.

My grandmother was diagnosed in her 60''s with Paget''s Disease. It''s different; it presents as disease of the nipple, with scaling, itching, and other skin issues involving the nipple. The nipple problems are the first sign of underlying cancer. She had a mastectomy, but no chemo or radiation because of the good surgical margins, and is also cancer free today.

As far as the BRCA1 and BRCA2 testing, I''ve decided not to have it. Here''s how I see it: yes, your chances are greatly increased if you have either gene, but if you test negative, you still have an 8% lifetime chance of having breast cancer. Because of my family history, I''m already very vigilant about my monthly BSE''s and noting any differences in my body. If I found out I had the gene, would that change the way I live now? Probably not. I couldn''t be any more careful or vigilant than I already am.

Women who test positive for the gene CAN reduce their chances for breast and ovarian cancer by having mastectomies and/or oophorectomies (ovary removal). In fact, having the oophorectomy alone reduces your chance of ovarian AND breast cancer. These are really the only proactive things you can do to reduce your chances if you test positive, besides very regular examinations and imaging. But would I have my breasts and ovaries removed at 23? Absolutely not. Maybe if I had already had all the children I want to have, and I could convince myself that I was OK with mastectomies and reconstructions. But I believe that I''m just as well off by keeping a close watch on myself, in conjunction with my gynecologist. Breast cancer is much more treatable when caught early!

I actually noticed a dimple several months ago that was new...ended up having an ultrasound and my first mammogram, because of my family history. Everything came back negative, thank goodness. I''ll start having annual mammograms at 30. Till then, it''s all about the BSE''s and being very aware of my body.

To the ladies who have lost loved ones to this moster: I''m sooooo terribly sorry. I cannot imagine how my life might be different if I had lost my mother, or my grandmother, or both. My heart goes out to you.