what to do?

[dorkyD]

am 26 yrs old. Grandmother had breast cancer, 1 aunt had breast cancer, my cousin, my mother & my sister @ 26 years old. The strange part is that my September I went for a mamo and they found a complex cyst in my left breast. It was needle biospied Iand it came back not to be cancer. In December I went for another exam and nothing was found. 1 month ago I went for a mamogram (mammogram) and they found several cysts, 3 complex cysts and a mass in my right breast. I had a "surgical" biopsy 3 weeks ago and it came back negative. I don't know what to do. I have been talked to several times about having a double masectomy to reduce my risk. My Mother & sister feel that it would be best as well. In December I had two DR's, one which was saying let's see what happens and the other saying..you're going to keep going through this worry until you get it. This time around the DR seems to on both sides of the fence. She is not being too pursasive either way and thinks I should be the one too decide. I feel like I'm going to keep getting these "complex" cysts and masses on both sides, which will require a biopse each time...and that's no fun. Not to mention what my breast will look like when it's all done, if ever. If anybody had any advise or thoughts on the matter I would certainly appreciate it. --Thanks, dorkyD

[Cleveland Clinic]

Dear dorkyD:  Your extensive family history is a risk factor for developing breast cancer.  You may benefit from speaking with a genetic counselor as well as a breast specialist who can evaluate your risk (possibly including genetic testing) and discuss surveillance/treatment options as well as the pros and cons of these options.  

[Under Forty Pam]

The doctors generally put the decision back on your shoulders.  They don't want to take the blame for anything.  Basically all you can really do is continue looking for a doctor that you respect and can answer all your questions.  Then make the best decision you can and don't look back.  Each person is a bit different on how they decide to do such a drastic thing and it is a very personal decision that you and only you will live with.  Good luck.

[dorkyD]

I have had a genetic test and am a BRCA 2--whatever that means.  I guess I should have put that in my inital question.  Thank you both for you responses.  It is a very hard decision to make.  I was reading today something about having your ovaries removed as well?? What's up witht that?

[Under Forty Pam]

If you have your ovaries removed that will remove the production of estrogen which is what aids in causing the breast cancer.  Hormone drugs they put you on is meant to stop the estrogen production and do the same thing.  Having your ovaries out is a more efficient way except for the fact it will put you into premature menapause and the issue that might come with that.

[carme]

If you didn't learn enough from your genetic counselor when you were tested and found positive for BRCA2...find another genetic counselor.
My prayers are with you since you are so young.
My BRCA2 family members didn't develop breast cancer until they were 34 and older. My mother is the only one who made it 26 years from 1 breast, 2nd breast, colon cancer then finally dying of ovarian cancer.
My younger sister had stage 3 at 47, had bilateral mastectomies and total hysterectomy.
I chose to have bilaterals at 49, after an MRI showed something inconclusive. It was LCIS. 10 months later I had total hysterectomy.
I've seen 6 close family members die of this disease.
My sister and I do not regret doing bilateral and hysterectomy...we still have relatively young children and grandchildren.
Yesterday, I had my 6 month check with my oncologist and the day before with my gyno.
He commented on how some of these public figures who have had minimally invasive procedures have had their cancer come back. He also said women should ask their doctor, "If it was your wife or daughter, what would you do?"
Like I've said before in this forum (and I'm sure to read a few comments about this again), It's cancer, not warts, not wrinkles, not grey hair...
Now I'll sit back and read the comments...after all this is just my opinion.
I choose Life!

[Avidhiker]

My two cents:  If I had a STRONG family history of BC, I would definitely get tested for the BRCA  gene and darn it, if it tested positive, I would choose the same route as you did--give it no place to take root or fuel to grow.  MAKE NO MISTAKE ABOUT IT:  Cancer is very serious.  My opinion is that you do whatever it takes to get rid of it and reduce the risk of recurrence.  How could you NOT want to do that.

One year ago, I heard the words, "Unfortunately Elizabeth, yours is one of the ones that came back as cancer".  It totally blew me away.  Long story short: 2.4cm, node negative, ER/PR+, HER2+, lumpectomy, 4 rounds of AC, 34 radiation treatments, herceptin, and now Arimidex for 5 years. No one felt a lump.  Microcalcifications on my yearly mammo gave it away.  I am 52.

I did not disagree with my breast surgeon's recommendation for a lumpectomy vs. masectomy.  He has over 30 years experience and has trained at Sloan Kettering.  However, I researched BC and all the treatment options until I was blue in the face, books and internet.  I had a nurse friend who came along with me to a teaching hospital's library where we read JAMA articles, research statistics, research papers, etc.  I am comfortable with my decision, and I do not look back in regret.

As you must know, BC is very complicated and every woman's tumor is different.  I am not a physician, but I do know that you could have a small, perhaps .7mm size, tumor but it can be very aggressive.  It can be very small but has already infiltrated the lymph nodes.  To the contrary, you could have a larger, perhaps 3+cm size tumor that is non-aggressive or did not get into the nodes.  If the cancer has already spread to the nodes regardless of the size, the chance of recurrence is much higher (think Elizabeth Edwards-her initial diagnosis was node positive). That is why the pathology report is extremely important in determining the appropriate treatment.  The cancer community is all in agreement that having the most extreme aggressive treatment does not guarantee that the cancer will not return.  There is no guarantee, and oncologists, in particular, will tell you that the risk is ALWAYS THERE for recurrence no matter what the treatment. CANCER REALLY STINKS.

Can you please tell me what you mean by "minimally invasive procedures"?  Perhaps you mean just radiation for DCIS?

I wish you and your family a cancer-free life.  Stay well.  Peace.

[Montana girl 06]

Did your  clusters of calcifications appear in a years time, or did they follow your calcifications over a period of years?  

[Avidhiker]

They appeared within one year's time-not present at all on the prior year's mammo.  Radiologist gave it a BIRAD 4 rating and off I was for a biopsy.

[ziggy123]

Montana Girl-I have been thinking of you....Have you heard from the radiologists yet? Did they give you any idea of how long you would have to wait for the results?
Boninclyde-I love your screen name. I picutre you with an adventurous personality, not afraid of anything. Am I on the right track? BTW, I live outside of Philadelphia, PA. Have you ever been in my neck of the woods? I love the Carolinas and have traveled there several times.

[Montana girl 06]

The saga continues... I called my surgeon Thursday. They hadn't received the report yet and had to request it be faxed to them. The surgeon's nurse called me later in the day and said there was no change in my calcifications. As long as I found no new lumps (what about the lumps they found in the ultrasound?) I can follow up with yearly mammogram and us and 6 month CBE. I asked them to send me a copy of the report and was ready to celebrate. Then at 9:30 p.m. my regular doctor called and asked if I had received a report. I told her what the surgeon's office said. She was quite surprised and told me the report actually stated the calcifications had increased somewhat,  there's 1 specific area of calcs they're worried about, and the radiologist recommended an excisional biopsy and she is not comfortable at all with me only having a yearly mammogram. ARGHHHHH! I wonder if they both received the same report!!! She's going to talk to the surgeon to figure out what's going on. In the past I've had 2 different surgeons who felt an extensive excisional biopsy was NOT necessary even tho recommended by the radiologist, so I feel like I just go in circles. I'm still waiting to meet with a 2nd radiologist who won't be back until next week. In the meantime, I have my daughter trying to get info on breast specialists in the Minneapolis area where she lives. (Can anyone else suggest names of specialists?) Sounds like that will be our vacation this summer. I need some answers.

[Montana girl 06]

I got a copy of the ultrasound report from my surgeon's office in the mail today, but no mammogram report. If that's all my surgeon got, I can understand why he just said follow-up. The report my regular doctor read to me over the phone about my calcifications was  totally different; it was my mammogram report and recommended excisional biopsy. (And guess what I forgot to ask after talking to both places? - about the birad rating!) I was really puzzled Thursday night after getting 2 totally opposite reports. Now I understand why. I'll have to call my surgeon again on Monday and request the rest of the report.

[ziggy123]

Montana Girl-Sorry that it took so long from me to respond. I am sorry that you had the rug yanked out from under you! When you got the initial report, was it just the ultrasound and not the mammogram? Have you been able to get the actual mammogram report? Are these changes significant from six months ago? Please forgive all of the questions, I am just trying to understand what you are dealing with. I hope that you are able to get some kind of reading from the radiologist who you saw before that said it was scar tissue. You are (as always) in my thoughts and prayers. Please let me know. Ziggy

[Montana girl 06]

As I prepared supper tonight I wrote down almost the exact same questions as you asked! I did get a copy of the mammogram report today. It's birad 4. Last weekend was very stressful just not knowing, and then wondering why the doctor called so late at night. (And she told me the radiology center called her and asked if I had been notified of the results which added to the stress.) The report stated that they're comparing film screening to digital screening which is obviously much clearer. After allowing for the changes in technology they still feel the calcs are more prominent and one cluster seems more pleomorphic. I have an appointment to meet with the surgeon on Thursday. Excisional needle localized biopsy is recommended. I hope to meet with the other radiologist before I see the surgeon. Waiting for my report was stressful. Now I'm just plain frustrated because I feel like I'll be going for biopsies for the rest of my life. I've made it a whole 15 months without a biopsy. Wow!

[carme]

Dear, I dealt with the calcs for many years, and all before I was tested for BRCA. The waiting, the biopsies, the needle biopsies, the US, the magnifications etc...especially with my family history. I know your pain, dear. I was 50 when I made the decision I did. By then it was a no-brainer for me.
I really do know what you are going through, I was there. I pray you find resolution, I pray they never find any cancer and I pray for you to have the strength to keep going thru this over and over if that's how it's going to be.
Carme

[Montana girl 06]

Thanks so much for your prayers and words of support. Do you mind telling me a little more about your history of calcifications and biopsies? When they found cancer was it in the same area they had biopsied before or a new area? Was there a mass or just calcs? What type of cancer? Was it found early? How many biopsies did you have? I'm sorry to hear you had to go through all that, too.

[carme]

I found my first lump in my left breast when I was 27. They performed quadrectomy (1980). It was benign. So began almost 23 years of mammograms, magnifications, ultrasounds, needle aspirations and needle biopsies along with the sleepless nights and nervous days waiting for results. All the calcifications were in the left breast. Cysts came and went. I was told I had dense, fibrocystic breasts etc.
I cannot recall how many needle aspirations I had, but I only had 2 ultrasound guided needle biopsies. The last one less than 1 year before my mastectomies.
All in the left breast.
I was in the Tamoxifen trial at the City of Hope and had Tamoxifen for almost 4 years. I quit because of continued swelling in my extremities that began after 3 1/2 years on the drug.
My mother who had survived breast cancer for 26 years, died of ovarian cancer in 2001. The doctors following me at the City of Hope suggested I be tested for BRCA. I have the BRCA2 mutation. WE ARE STILL NOT PROTECTED AGAINST INSURANCE COMPANY DISCRIMINATION FOR GENE MUTATIONS...PAY FOR IT YOURSELF!
While we mulled over whether to have bilateral mastectomies or take the drug to stop ovarian function or have a hysterectomy, I had a routine mammogram (which for me was every 6 months). Something appeared in the "right" breast, for the first time! Now they were talking real serious about having bilateral mastectomies. Especially since my younger sister had just had stage 3 and did bilateral with tram flap recon.
After MRI showed something, I elected to have the surgery. They found non-invasive LCIS in Right breast. No nodes involved, so they said I needed no chemo, no radiation.
She, my breast surgeon, was happy to do this "breast reduction" as she put it, as it looked like I needed it anyway.
The plastic surgeon who did the reconstruction...well...he almost killed me.
So, I live my life flat, but alive!
I am now 54.

[Montana girl 06]

Thanks for sharing your story. You've made a lot of difficult decisions to get through your ordeal. Like you said, you're alive and that makes it all worthwhile.

[Montana girl 06]

I'm tired of this emotional roller coaster. Today I talked to Radiologist #2 and he said he felt the changes in my calcifications were due to the difference in technology (films vs digital images) and feels I don't need the biopsy. Between the differing reports and naughty kids at school I am just drained. I changed my appointment with the surgeon to May 3 so he has time to get this new report. I'm fine with no biopsy for now. Hooray! I do believe I will still go to a specialist this summer and get a 3rd opinion.

[boninclyde]

Haven't switched the name yet but soon. I have been watching and lurking in the shadows not really knowing what to say. I did see a special today on digital mamos and the doctor said you need someone really experienced to read them. He said the medical field was short handed on professionals that could inturput them correctly. A second opinion? I just don't know what to say.

[Montana girl 06]

We've only had digital mammography here since January so neither radiologist has been working with it that long. They both work at the same place but have very different interpretations. I still want to go to the breast center at the U of Minnesota for a third opinion. What was the special you saw? Maybe my husband can download it for me to watch later.

[boninclyde]

It was on a show here called the view with Barbra Walters. I will look it up for you.

[boninclyde]

It was aired April the 25th. Just type in The View  and you'll find it there.

[Montana girl 06]

I found a very brief summary of the program but that's all. I did find some other interesting articles on mammograms and MRI's at the ABC site.

[boninclyde]

Glad you found the sight. I am sure if you google, not enough experienced technicians reading digital mamos you may come up with something. Sorry for not posting in a while the girls brought home a bug that I caught and Friday, April 27th was my 17th anniversary. Have a great day.

[ziggy123]

Happy Anniversary Boninclyde! I hope that you were able to celebrate in spite of your bug. I know how easy it is to catch everything that comes in the door. My own five children brought home every nasty cold and cough they could!
Montana Girl, any word on your readings? Have you had any updates? I have been thinking of you and was curious as to your next step. Please let me know.

[boninclyde]

Hay ziggy. How are you doing? Yes we did get to go out. I just drank a half of a bottle of pepto and hoped for the best. I had been looking forward to dinner all week. I absolutely love crab legs and steamed oysters. They stayed down. I was going to eat them regardless.

I think Montana girl goes to doctor today or tomorrow. It is posted above. I don't want to go back and look cause yesterday I type a very long response to someone on here and went back to look at their message again then when I went back to what I was typing it was gone.

Have a great day.

[boninclyde]

Its May 3rd Thursdasy for Montana girl.

[boninclyde]

Well it Thursdasy. Just making fun of my spelling. How did things go? Waiting for you to post good news.

[Montana girl 06]

I was in a hurry and posted under a different thread up above on microcalcs asking for opinions. Hope your bug is gone by now bon.

We leave in a week for my youngest daughter's college graduation in Idaho. The kids are flying into Idaho so we rented a condo and are taking a week vacation together. I teach an evening class at a local university and have to read papers, correct tests and post grades before I leave in addition to getting things set for my first graders at school so time is scarce. I feel more resolution with my microcalcs, though, so I don't have that stress.

[boninclyde]

Not going to type much. Just wanted to let you know I did read your post. Any way of getting that 2nd opinion in Idaho. Just a thought.

My daughter has been throwing up since midnight last night so she must have it now. As for me I woke this morning to the first period in two months. I am having horrible lower stomach pain and terrible lower back pain. Still nauseated. I don't know what is going on now. I got a few ideas. I decided to go off the tamoxifen a few weeks before my next vag and stomach ultrasound to see if the tamoxifen was causing those 4 cyst on my ovaries and the swelling in my stomach. My appointment should be next week but here I sit and have not made it yet. I told my doctors and they said "don't go off your meds". So I went back on the meds. Then I went off again. I must know if it is the meds causing them. Then a few friends got upset and I went back on. Then dropped down to 1/2 a pill a day. I guess enough scewing with my hormones. Anyways going back to lay down. The Advil worked this morning just took another and it's not working. Yet. You better believe Monday morning I am going to take care of me and make my appoinment. I am even 2 months past my pap. My doctor want do both the ultrasound and pap in the same day. More money if I have to come back twice.

[Montana girl 06]

I'm glad to hear you're making an appointment next week. I always get nervous when I hear people changing their meds... I do hope you feel better before Monday.

I did think about making an appointment in Spokane (we'll be in the vicinity) but we have so few family days together that I didn't want to make it all about doctor appointments. I could go back to Spokane this summer but my doctor wasn't sure if they really had a good breast center there.

[Montana girl 06]

Now our small city of 35,000 people is getting a new director of radiology at the hospital. She is(was) vice-chairwoman of radiology at Boston Medical Center and  a professor of radiology at Boston U. She plans to create an electronic network to help us access urban medical advice. Hmmmmm. I wonder if it will be as good as it sounds. She fell in love with our area, decided to take the job, and should be moving here soon. I hope she can offer some training for our radiologists so they don't give such conflicting reports.

[ziggy123]

I have made it a practice to request a mammogram appointment when one particular radiologist is on duty. I trust his judgement whem looking at my films. I agree with you that having the same person read your x-rays is important. I realize that this is not always a possibility as people coma and go from many of these facilities. I am glad to hear that a specialist is heading your way. I hope all is well with you as the school year comes to an end. It cannot happen soon enough for me!

[Montana girl 06]

ziggy - The kids are wild. I will miss a week of school for my daughter's graduation and I really need the time away. I leave for Idaho tomorrow.

boninclyde - Haven't heard much from you and I'm wondering if you're still sick? Let us know how you're doing.

[boninclyde]

Hay all.  Montana girl I am feeling better. Still having some dizzy spells for some reason. I went for my ultrasound yesterday. They said the cyst ( or whatever it is) on the left ovary did shrink very little but it did shrink. The right ovary still has the 3 cyst (or whatever) and now something there that they don't know what it is. The tech was very alarmed but the doctor seemed to think it could be the mass (3 cyst together) collapsing. So he said he would do a complete hysterectomy or wait and see for 4 months. They would do another ultrasound in September. If I wait till september thats is the month I was hoping to do my reconstruction. I can't afford to be down right now. A decision that is tough. I hope you have a relaxing time. It will be good to get away with your family. I hope to go to the beach with mine the day after school is out.

Hay ziggy.

[Montana girl 06]

Glad you're feeling better. Our trip was wonderful other than our son getting a bad case of the flu and cancelling on us.

Do you think you might get a 2nd opinion on the cysts? It seems like it's always something.

[boninclyde]

Doctor called and wants me to have a cat scan. He said there is something there other than the cyst and they have no clue what it may be. I hope they are only covering their own butts and that it is nothing. I go tomorrow at 3:30 scan will be at 5:00. I need everyone on my side here. There again I am scared. Of the dye injection, waiting and the results. I don't know how long that will take. Your right it's always something. I guess it will never end. I never would have guessed this is the path my life would take.

[boninclyde]

I forgot to say that whatever it is they say it is fluid filled. Is that a good sign? I have read it both ways. If it is fuild filled it is not cancer and it still could be cancer if fluid filled. I have been posting on the ovarian cancer site some also.

[Montana girl 06]

I wish I could answer your question about "fluid-filled" but I can't. I hope you get better answers at the other site. I'm so glad the doctor called you back and got you in tomorrow so you don't have to wait a day longer. I will continue to keep you in my prayers. I leave town for another graduation tomorrow but will check this site when I get back. Keep us posted.

[ziggy123]

I just read your post. How are you? Did you have your test today?
Are these the cysts that might be caused by your medication? I hope all is well and I will keep you in my prayers.

Montana Girl-glad your trip went well. Boninclyde, you, and I need to find a central meeting place and have our own get together!

[boninclyde]

I desperatley need a get together. You name the place. I wish we could post our pictures, places and just things on this forum. I bet Montana girl could send us some beautiful pictures.  Maybe I'll suggest that to the administrators here. I wish we could exchange e-mails. I did that once and got scared cause someone said it went out to the whole world so I asked the adminstrator here to remove it. Boy did I get a fusing. Yes I had my test. So glad it is over. Every muscle in my body hurts from being so tense. They told me this would not be like the other test (whole body CAT) so they would not have to give me so much of the dye. Well my heart palpatated but not as long as last time. I was a little (allot) scared when my throat and chest got so hot. I was told it would be an all over warm feeling. Poor techs I was crying. A wreck. They even fused at me to calm down. But I understand their position.  Now I wait. How are you ziggy? Montana girl sure has been stepping out on us allot lately (LOL) Hope she has a wonderful care free time.

[Montana girl 06]

I went to a wonderful small town graduation (nothing boring with only 14 graduates.) I saw a former classmate I hadn't seen in 30 years! Boninclyde-I'm glad you did ok with the proceedure. When do you get the results?

[boninclyde]

Sounds like you had a good time. And wow meeting that friend again after 30 years. How great.

I should have the results Tuesday.

[Montana girl 06]

Any results yet?

[ziggy123]

Boninclyde-I hope all of your test results were good. I have been thinking of you.
Montana-Hope you enjoyed all of your graduations! Mine (finally completed my Masters) is tomorrow. One more week of teaching and then exams...I cannot wait!

[Montana girl 06]

Ziggy - congrats on your graduation.  What an accomplishment. We have 4 days of school left.
Boninclyde - I'm a worrier and now I'm worrying about you and your test results. I hope you can let us know soon.

[boninclyde]

I will post more later about the results. I am OK. Still don't have the answers. Radiologist report was very undescriptive.  I have to pick kids up from school. Explain more later. We may have to jump to a new thread soon so keep watch.

[Montana girl 06]

I got a phone call this week with the second opinion I requested. This surgeon also recommended a 6 month follow-up diagnostic mammogram after reviewing mammograms that went back 2 years. I also reread the 2nd radiologist's report and his interpretation that my calcifications are benign is very convincing. I feel comfortable waiting another 4 1/2 months until my next mammo when I anticipate the cycle of stress will begin again...

[ziggy123]

Glad to hear some consensus on your reading. I know the feeling that you describe, you breathe a sigh of relief and then wait until the next mammo time. I am not set for another go around until October. I just found out that my cousin on my dad's side just had her breast removed last week. She is in her late forties with three young boys. I keep after my daughters to be especially vigilant in light of so many members of our family being diagnosed with breast cancer.

Boninclyde-How much longer until your children are out of school? I am sure they will keep you very busy!

[Montana girl 06]

Ziggy - Today was our last day of school. Hooray! I have several workshops to attend this summer though to keep me in the know. Sorry to hear of more bc in your family. I'm fortunate to have no bc family history, but now they say very dense breasts increases the risk of bc 4-6% which puts the risk right up their with family history. Do you or your family members also have very dense breasts?

Boninclyde - Any more info on your cysts or whatever it is they found?

[Montana girl 06]

Hey, I miss your posts? How did things turn out?:

[ziggy123]

Ditto from me! Where are you? I hope all is well!

[boninclyde]

OK I am back. Wow it's hard to remember where I left off. Hope all this makes since.
I still only have that vague report from the radiologist. My PCP (not the one who ordered the test) call me on Friday with some other concerns I had that I'll explain in a minute but also told me to contact the radilogist and have him to write a report comparing the two CAT scans (06 & 07). They said he should do it at my request and that no doctor would have to request this. I'll let you know when I get this done.
During this waiting for info on the latest scans I requested copies of my scan from May of 06. I was floored to read that they found a very large 5cm heptic cyst on my right interior lobuler of my liver (per the report) and no one ever told me. So I called my PCP to ask why did they not tell me and shouldn't it be something they should follow up on since I was diagnosed with breast cancer 45 days later. The office called back Friday and said the it is normal to have this size cyst on the liver, that lots of people have them and don't even know it. Said it should cause no problems and they were 100% sure it was just a cyst. Good news.
My PCP said as far as the ovarian whatevers, wait 3/4 months or do a biopsy. It was up to me. I guess since they are not causing any pain or abnormal bleeding I will wait the 3/4 months. I don't think I will go back to this GYN. I am going to see my oncologist soon and ask for a recommendation to a GYN oncologist and have my records transfered. I would feel better him looking at all my results as he sees this type of test results all the time and would know what he is looking at. Well maybe.
Sorry I did not get back to you guys sooner but I was at school volunteering all week last week, checking with doctors, paying bills so we could head for the beach on Saturday (the day after school was out). I got back last night. I had a great time. The kids had a great time. Me and hubby took my 3 girls and one of their girlfriends. I bought a new bathing suit. Couldn't find a nice masectomy suit. Had to pin it at the chest to hide the insion. I got really aggravated. I sure hope I can go through with this reconstruction surgery around September.  

Thanks for checking on me girls.

ziggy I am also sorry to see another of your family members have to go down this terrible road.

[boninclyde]

Did any of that make any sense?

[Montana girl 06]

It's good to have you back. I don't understand why doctors don't tell of what they find whether it's normal or not! It's our right to know. I'm glad your ovarian whatevers aren't causing you problems at this time. Let us know what the CAT scan comparison says.

Ah, the beach sounds so inviting! That's one thing I miss where I live. Enjoy your time with your girls this summer. (And I love to hear about moms like you that help out at school. I love having parents help in my classroom.)