BRCA1 AND BRCA2
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I am a 43 breast/ovarian cancer survivor. I have both BRCA1 and BRCA2 cancer mutations. My breast cancer was hormone negative - Invasive Ductal Carcinoma - with no lymph involvement. Mastectomy and 6 tx of adrimycin, cytotoxin, and 5FU. Then 15 months later ovarian cancer was found, cancer again. Complete hysterectomy (fallopian tubes removed) the cancer was found incased in the ovaries. Again no lymph involvement. 1 tx of taxol 3 taxotere.
That was 2 years ago. Hairs grown back and life is kinda back to normal. But the mutations are still there. There is no surgery or tx that will take them away. I got one mutation from my mom the other from my dad. Mom and brother died of pancreatic cancer. So I am constantly looking over my shoulder sorta speak.
My breast cancer gentics doctor Dr. Sophia Merajver at UofM she sent me to a Dr. Grace Elta a gastroenterologist at UofM. She has done an EDG so she could look at my pancreas through my stomach wall. Mild chronic panceanitis was found. I am having an MRI next week because I have lost 10 lbs with out trying. Soo this is all my information short and sweet. My spelling is terrible so forgive the mistakes. I am getting a bit scared I really don't want go on this ride again. Can't take hormones and menapause sucks. I guess I need reassurance.
thanks knitkim
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Hi Knitkim, wow your situation sounds really difficult. You have already been through so much. I know nothing about Pancreatic cancer. My oncologist said he has never seen anyone with both BRCA1 & 2. I'm sorry you have to go through this. I don't know what to say except, I will send this off with a prayer for you. Don't give up hope.
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Hi knitkim - you really did inherit the double whammy, didn't you! I'm BRCA-1+ (only) but with an a mutation of unknown significance in BRCA-2. Go figure. Did you have Bilateral Mastectomies? It's not clear from you post.
Do you mind if I ask how your ovarian cancer was found in an early stage? Was it through trans-vag. ultrasound? I am only a bit over two months out from a bilat. DIEP reconstruction and still healing and have not yet scheduled my oophorectomy, though I have consulted with my gyn.oncologist to coordinate timing.
It does sound as though you are being followed closely. Has your onc. checked to see if there are any clinical studies for breast + ovarian cancer patients that you might qualify for?
Let us know what the MRI shows next week. We care. I don't know anyone else with both 1&2, but there are sure plenty of us here that will agree that chemo-induced menopause sucks! Stick around and you'll find others who have been through the same steps of your journey.
Lisa
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Thanks Lisa and Helen
The initial surgery only the cancerous breast was taken. Then almost 9months later I opted for reconstruction plus removal of the noncancerous breast- with immediate reconstruction. Did not go so well...three expanders later (one removed in the office on kind of a dare). I have breast bumps again but have not decided on nipples.
How the ovarian was found. I truly believe I am blessed, because in January of 2005 I told my oncologist that I did not "feel" right. He passed it off as in my head. I went to my ob/gyn she listened. A tranvaginal ultra sound was done and they found a cyst. Because I was still ovulating Dr. Niver wanted to watch it and told me not to worry, but wanted me to have another ultra sound in May. I missed the initial May appointment but the tech called to get me to come in. I was still feeling wonky. But put it off to end of the year teacher stuff. When I did come in the tech found more cysts and the original one had doubled in size. They did a CA125 and it was 18 - below the magic 30 - Dr. Niver did not think there was a problem but with my history and family history (did not know about the mutations then) we decided it was time for a hysterectomy. She said she was going in hoping for the best but prepared for the worse.
I had surgery and they were about to close me up because everything with the naked eye looked okay. However, upon microscopic dissection of my ovaries the Dr. found cancer cells. So a two hour surgery ended up being 5 because they then did the staging for cancer. Lymph taken and intestines palpated. I was blessed the cancer had not left my ovaries.
My oncologist came to my bedside at 11:00pm and asked me how I found the cancer. I told him that it was because I did not feel right and Dr. Niver listened to me. He was johnny on the spot for the breast cancer but...I would tell him things and he would almost be kinda condesending so after the tx. I just had so many questions he could not answer. I contacted the 800 cancer number at the University of Michigan and the nurse that was on the cancer question line put me in contact with Dr. Merejver. I am told she is one the country's top genitic breast cancer Docs.
I am an anomaly I know. And with my family history I really don't want to put things off. On the other hand I don't know if I can do chemo a third time. Sometimes ingnorance is bliss. With that being said I have two awesome kids and I want to rock grandbabies some day. My mom died when I was 18. We knew she had cancer for 3 days and then she was gone. Then my brother sufferd for 18 months. I said I would not die of cancer. I guess I should have been a little bit more percise with that statement and say "never get" oh well the devil is in the details.
Sorry for such a long post. The blood work came back and my thyroid is fine...of course, so now we look for something else to see why I am losing weight. I also see the doc who listened to me on Thursday. Dr. Karen Niver. UofM is a hour and half drive from my home so I try to get as much done here in Port Huron Michigan that I can. Then I go see the docs at UofM. I will keep you posted thanks for the support and prayers.
I truly believe in the power of prayer. The Lord has His hand on my shoulder or I would not still be here.
Thoughts and Prayers
Kim
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wow, Kim - you certainly have had an arduous journey with cancer! I only hope that with continued studies focused on these gene mutations that soon there will be specific methods to treat/avoid these cancers. Thank you for sharing your story. Your persistence in following your gut feeling, and not stopping until you found one of your doctors who would listen, is a good lesson for many. We know our own bodies best. All the best of luck to you.
Warm hugs
Laurita
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Knitkim, please join us at F.O.R.C.E. (www.facingourrisk.org). Most of us are at high risk and BRCA +. You are not alone....we get it.
You are very blessed to have caught everythig early. You are a smart woman to make sure you are followed closely.
I am BRCA 2+ and have had prophylactic mastectomy and am currently using the CA125 and TVU fo ovarian surveillance.
There wil be a conference in May addressing everything you ever wanted to know about BRCA, and a lot of last years conference is viewable on the FORCE website.
I hope to see you there.
Suzanne
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Wow, brca 1 and 2...
I had no family history of cancer at all, an my (male!) oncologist made me take the genetic test...he thought 43 was too young, and wala, braca 2 (I refuse to capitalize this just now...)Inherited down from my dad, with primarilly males, so never showed up, although now I do wonder if my father's mother didn't die of cancer (recorded as something else)...
so, My sister is clear, left to me to check my two sons when they are of age (now 11 and 14).
I read your story with amazement. You are clearly being looked after by some benevolent spirit.
Please don't worry until there is something to worry about. It is so easy to go down that well greased shoot of fear.
Please let us know and I send my best wishes for strength and peace.
Flashdif
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Hi Kim, thanks for sharing your story. Wow. It is truly a miracle that the ovarian cancer was detected early. Praise God!! I am getting the vaginal ultrasounds one a year, ish.
I did the blood test for BRCA today and will find out in 2-3 weeks. My sister is BRCA 2 +, so I have a over 50% chance of having the gene, as now I'm a BC survior. I feel strange because I was a stage 0 had lumpectomy and rads and now its behind me, so to speak. Almost doesn't seem real. I do hope I am negative, but we'll see.
Kim do the docs want you to do chemo? Do you have to have rads? Just wondering where you are at in the OC process.
My heart goes out to you, and I am so glad you believe in God. Having that help and hope have made a huge difference for me, going through it.
Sending this off with another prayer for wisdom and peace and health.
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Hi Flashdif, Helen and Suzanne
I had six rounds of cytoxin/andremyicin/5fu for the breast cancer. Four rounds of taxol/taxatere for the ovarian cancer. No radiation was needed because the cancer did not go to the lymph.
My MRI went okay tonight. Except when they tried to introduce the contrast couldn't find a vein. My veins are shot because of the breast chemo; cant use my left arm because of lymphedema. And the doctor that put in my port did such a horrible job that after the 4th taxotere tx and healing took place I had a different doctor remove the port. It was so twisted that it took him almost 20 minutes to untwist it. How do I know that... well I would not let them put me under and I watched him remove it from my shoulder. Dr. Anthony
Bout is an Great surgeon, he and Dr. Demashkiev are the only surgeons in Port Huron that I will let touch me.
So I go see my obgyn tomorrow and get back under her care for awhile until something goes south in that neighborhood. You know if I don't find the humor in this situation. I would be crying all the time. So I choose to laugh a lot.
I'll Keep you all posted
Live, Laugh and Love
Kim
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Hi Suzanne
What is TUV?
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Kim how totally frustrating. I hear ya, sometimes it is better to laugh. But we also need space to cry at times. When I am tempted to feel sorry for myself - that is a time to see the humor in it. When I genuinely just feel sad about what is happening, I let myself cry.
I hope nothing else south for you!
((Hugs))
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Hi all
Found out on friday everything looks great...except...my silicone breast implant is leaking. No wonder I feel like crap. One more operation...I am getting really tired of all the nonsense.
Kim
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Hi Kim,
I am also going to the U of M. It is a great hospital. You will get excellent care there. Good luck to you and bless you. It sounds like you have been through a lot.
Ilene
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Kim, what will they do, with the leaking? Do they have to replace the implant? I hope you can overlook health problems and enjoy the season.
Sending this off with a prayer for you.
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Hey, sorry to be AWOL for awhile.
Leaking implant? Like life wasn't complicated enough???
Hang in there, and best wishes for a healthy and uneventful 2008!!!
Flashdif
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Hi Gang
I saw the ps today. It was not fun at all. He was almost acusatory. My husband jumped him a bit. I am going to go to UofM for a second opinion. He almost made me feel like this was all my fault and that I was out to blame him.
No blame, we just wanted to know how this could happen and if it could happen again. To see more of the conversation between doc and husband go to www.knitkharma.com I typed the blow by blow there. I am really getting tired of all the drama. I know that "if" the implant is leaking it has to come out. Has anyone heard of "plus size implants" I am a 1x/2x and these hollywood implants just are too small.
Well this is probably a whole new conversation now. probably should start a new thread. But the energy is just not there right now. Happy New Year everyone.
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Hi KNITKIM: I've been away for awhile, and logged on to check on you.
What is going on? SEnding strength and wishes for a peaceful 2008.
Flashdif
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KIM & ILENEE:
This is certainly a jouney we are all going through. I live in Saint Clair Shores, MI. I am in Austin, TX where I was dx 12/14/07 with triple negative, 4.6 cm, No and Mo, but they changed it to Mx because there is a "spot" on my lung, they think it is nothing PET says too small to biopsy and can't say anything other than it didn't light up much.
I am having a lumpectomy tomorrow (mon. 1/14) I have generous breasts and radiologist, surgeon and oncologist say go for a lumpectomy not mastectomy.
In Austin, my surgeon is Dr. Kelly Martinez, oncologist Dr. Debra Patt (formerly of MD Anderson) and radiologist Dr. Dziuk. I am very confident in all of them. I will have AC plus taxel for 3-6 months and radiation possibly with balloon 2x day for 5 days, or 35 days (I'd like the 5 day method but wonder if thre's been enough study on it.
More to the point, I do want to get to MI and have treatment up there but have Dr. Patt here my main Dr. overseeing all of this. I have no problem flying down here as often as necessary. I looked on-line at Karmanos Cancer Center, Beaumont Hospital and U of M but really didn't find much. Maybe I am just too exhausted already and don't know what I'm doing. Any information or help you can give me would be appreciated. MD Anderson also has physician to physician treatment consultation. I am so scared with this triple negative and I know it is important to get it right the first time, strong and long.
One more thing I asked about BRCA 1 and 2 (don't know the difference) testing and was told testing would not be for me because there is no family history, I am the first with breast cancer and I am not Jewish. Although, my dad's niece (1st cousin to me) had breast cancer, don't know what kind. I have a daughter and granddaughter and thought testing would be for them to know. Thoughts?
Thanks
Cookie
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Hi Kim, I went to your blog. How great that your hubbie stood up for you w/the Doc. Awesome!! I hope you can find a more thoughtful, empathetic doctor. There is no excuse for that.
Cookie, I've been told that the same, that you don't need to have genetic testing unless you have a family history.
I got my BRCA test results and I have the "deleterious mutation." Dontcha love the terminology? Anyway, to translate I carry the gene that puts me at a signigicant risk for Breast and Ovarian cancer. I will be talking to my Gyn and my Onc Docs in the coming weeks to talk about where do I go from here. The recommendation, as most of you know, is to remove the ovaries and to do mammograms and breast MRI every year. I had an excellent breast surgeon and will look for referrals for future surgery. Whew.
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Kim, Helen and others who are BRCA positive, no matter what the determination. I am BRCA2+ myself and it runs very strong from my dad's side of the family. Had the ooph almost 6 years ago and was on Tamoxifen for a couple of months before having the PBM last May. Just recently discovered the DCIS but it is so far not invasive.
Bisous is so right. There is help, love and support here for cancer survivors but for more info and support for the BRCA situation, FORCE has been exemplory! I really understand so much more about the gene mutation and what it means to me as well as my kids in the future.
Kim, I am a 2X size lady. My saline implant (lost the left one back in August to an infection but getting it replaced) is 750 cc's. I was told that the silicone for the mastectomy and combined with my upper body shape was better for the saline. In the end, I am supposed to a size C. Keep us posted how you are doing. Feel free to email me if you need to vent, bethpknits-pink@yahoo.com.
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Cookie, re the gene thing: I found that I am BRCA2 (BRCA 1 and BRCA2 are just specific gene pairs with a mutation of either a truncated or extended tail, associated with increased breast cancer probability) with NO family history, but with strong Eastern European Jewish (Askenazai) ancestry. My doctor make me have the test because of my age at onset (43).
I was told, in my research, that non-jews of Eastern European ancestry may also have the genes; but these are not the ONLY genes that carry a mutuation. BRCA 1 and 2 are both genes involved with cell growth rate, and you can see how a mutation with these regulatory helpers could affect cancer cells going to town. There are many other genes that may affect some chemical regulation that allows errent cells to organize and become a problem.
They found these genes by noticing that the Askenazai population in the US had a higher than expected (statistically significant) probability of breast/ovarian cancer, and then did a study comparing the maps of these individuals...and found the common mutations of these genes. They have, and will continue to find, additional genes to look for.
So....if you have a family history and are interested, there are geneticists that specialize in cancer (I found them by googling), and during a consultation, they will tell you whether it is worth doing the blood test.
Good luck, strength, and peace,
Flashdif
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Kim and Ilene:
I am Casa Grade, AZ starting my chemo on Tues 2/5/08. I live in MI and am looking for an oncologist there. I live in Saint Clair Shores, but I really don't care how far I have to go to get the "best." I am Triple Negative, had a lumpectomy in Austin in Dec. 4.5 cm, Stage 2b (maybe Dr. says 2) no lymph nodes, good margins, a tiny spot on my right lower lung they don't think it is cancer, too small to biopsy.
So, can you tell me about your Drs. at U of M and why you chose U of M instead of Karmanos or Beaumont? I don't know which is better for breast cancer, especially triple negative. Of course, we all love U of M, but I don't want to have the blinders on when deciding who to choose.
Thanks
Cookie
PrenticeG@comcast.net
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HI
I am having the genetic blood test tomorrow afternoon March 6th..I have had 3 breast cancer recurrence...still on Tykerb and Xeloda..I am at much higher risk I was told.. for Ovarian and for cancer to spread to other parts.. This last time,, I had tumor on my left lung.. had it removed (and also. upper left lung was removed) I Understand it will take 2-3 weeks for results? and also if this comes back positive.. ovaries have to be removed and also... possibly my other breast?? is this true? Any advice or comments,, please
Donna
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Hello Donna,
I tested positive for BRCA1 shortly after being diagnosed with DCIS. I chose a bi-lateral mastectomy so I wouldn't have to worry about cancer coming back in my other breast. Also, for reconstruction purposes I thought it would be nice to have breasts that looked the same
It's been about one year since my reconstruction and I am very pleased with the results. Regarding your ovaries....if you test positive for BRCA1, this is a tough decision. I've heard them call ovarian cancer the silent killer as it is so difficult to detect and usually isn't found until symptons appear - at which time it could be quite progressed. I had my ovaries removed in my 30's so didn't have to make that choice when my genetic results came back positive but if I had to make that choice because of my genetic testing, I probably would have chose removal to be safe. However, having your ovaries removed opens a new problem area - hormones! If you don't go on HRT you deal with instant menopause and that isn't fun......I had HRT for 10 years (once a month injections) and had to stop because of the breast cancer diagnosis so the last couple of years have been pretty rough. Since I no longer have any breast tissue and I don't have ovaries I am seriously considering going back on the HRT shots. I'm too darn young (49 yrs) to be in full blown menopause with no sex drive, etc. Anyway, I've talked your ear off and should get back to work.....good luck tomorrow Donna and with all your future holds. -
Thank you for replying, I was first dx with breast cancer at 46, then recurrence 2006, then again in 2007 while still on chemo..I did have mastectomy when I ws first dx.. and had reconstruction of the left breast. HOW would they re construct my right breast IF I DECIDE to have that one removed? I was put into instant menopause instantly at 46 when I sarted chemo....Not as bad as I thought, I get hot flashes lot. when I lease expect it, lol..I also read, there is NO guarntee at all.. if you do have the gene..that surgery will take care of it. My cancer COULD possibly still come back somewhere else.. SO many things to think about.. ONe step at time. wait till I get results bacl.. Thank you
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Golden Eyes - let me know what you decide - i know it is overwhelming - was just given my results yesterday - positive for BRCA2 - had left mast and 12 lympnod taken -4 cancerous - it's been a heck of 1.5 years as it became infected and i now have a crater in my chest instead of a nice neat long scar. Yes I'm very nervous about having a right mast and oop like my GP recommends. Going to speak to my onc next week and maybe he can shed some more light making my decision easier. Hugs and prayers to you!
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Dear all,
You guys are amazing as to how you have dealt with your cancers. My eyes welled up reading your posts. I am not a patient myself, but a junior researcher who is studying specifically breast cancer and pancreatic cancer with mutations in Brca1 and Brca2. I came across this forum while looking for information on Brca1 and pancreatic cancer. I do what they call in scientific jargon "mouse modeling of breast cancer or pancreatic cancer" carrying mutations in Brca1 or Brca2. We introduce mutations found in these genes in mice. We analyze the tumors that subsequently develop in these animals to understand how these mutations contribute to cancer development in humans.
Since most of you have family history with Brca2 and Brca1, wondering how many of you have a history of pancreatic cancer in your family? We have made some interesting observation in our mouse model of pancreatic cancer with Brca1 that could be useful in understanding the earliest hallmarks of pancreatic cancer in Brca1 carriers. There seems to well documented risk of pancreatic cancer and Brca2 mutation carrier status, but mostly anecdotal evidence for link between Brca1 mutation and pancreatic cancer.
Any reply to be post will be appreciated.
I wish you all the best. My heart goes out to you all. Pleae keep your hopes alive.
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I had my blood drawn today for the genetic testing. I first have to see if my insurance company will pay for it. Myraid will then call me by Friday and let me know. Once I give the approval, provided the appeal is successful, I should know in 3 weeks. My mom was diagnosed at 58 with stage IV ovarian and I was 46 when diagnosed with DCIS. My sister and I have daughters so we are very anxious to find out the results. I am almost at the point where I would just prefer to get my ovaries removed ... BC increases your % of ovarian cancer. I have had mammos, TVUs, and CA125 testing, and 6 month gyn check-ups since I was 32 years old. The ovarian cancer screenings usually won't find the cancer in the early stages, rather the later stages. I am much more concerned about the ovarian cancer than BC - especially since I am on Tamaxofin for 5 years.
The counselor gave me an 18.5% for testing positive. We shall see. I just want to know one way or the other.
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