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Posted 12/8/2004 3:45 AM (GMT 0)
Hello again and unfortunately, I am a new member of the club. I still don't know all the technical jargon for this disease so i'll do the best i can. I got the results earlier today but have not been in any state to talk about it until now.

My biopsy showed ductal CA in situ and invasive ductal CA. I'm not sure of the size although i do know it is small. Was told the choices were mine-lumpectomy with radiation or mastectomy. Then they want me to choose which way they check my lymph nodes(which were also suspicious on mammo). So many choices and not much knowledge to go on.

I had to call my family tonight and I also told my kids (the ones that are old enough). It's been a rough day.

The surgeon said the lumpectomy would remove tissue about the size of his fist. I do have large breasts but worry about the other getting it or coming back.

I know I am the only one who can make this choice but I could really use some input. If someone opted for bilateral mastectomy without evidence in other breasts, do most insurance companies cover this? If I opted for left mastectomy with reconstruction, do they make the other one match? Maybe I should just go with lumpectomy...i don't know.

All i do know right now is that i am terrified. I go to see the radiation oncologist on the 13th and then we set up the surgery. I have decided to have the surgery done in Nashville but my treatments will be here in Bowling Green, Ky.

I don't mean to write a novel here but once I started it was hard to stop and it seems the only thing keeping me sane right now...............................Sherry.........................

Posted 12/8/2004 3:57 AM (GMT 0)
Sherry,
I'm so sorry that you had to join our club. I know your head is reeling. This was the hardest time for me. Once I had a game plan I felt much better -- like I had a little control. I didn't have a choice. I had to have a mastectomy. I ended up having the "healthy" breast removed 1 1/2 years later and doing bi-lateral reconstruction at that time. I didn't have reconstruction initially because my daughter was only 19 months old and I didn't want to be incompacitated any longer than I had to. In retrospect, having it all done at one time wouldn't have been that bad. I just had surgery yesterday to try to match up my new breasts. The "healthy" breast has always been bigger. They will never be perfect, but I don't regret having them both removed.

Please know that you are in my thoughts and prayers. We will be here with you on your journey to offer information and support.

Hugs,
Julie
Posted 12/8/2004 5:09 AM (GMT 0)
Sherry, I am sorry to hear you are a member of our club. Much as we love meeting new people, we would rather there wasn't a need. I had bi-lateral mastectomies, one at a time. The left one was prophylactic and my Dr did get the ok, so insurance paid for it. I had invasive lobular, which many times turns up in the other side. That is the reason they ok'd it. Your Dr is the one to ask about that. He may have some way of writing it to get it covered. If you decide on a mast, your insurance has to pay for it and pay to make the other side match. Probably works that way if you have a lumpectomy and need them fixed to match too. I am sure someone else here can answer that for sure. I know you feel overwhelmed right now, but just take some deep breaths and stay with us, we will help you through this. Hang in there sweetie. L&H, Gail
Posted 12/8/2004 11:55 AM (GMT 0)
Oh, Sherry...I hope you can feel my arms wrapping around you now....My diagnosis at age 30 hit me like a ton of bricks. I got the diagnosis when I did the biopsy and had to wait a full 8 days for the path report. Path report in hand, I was empowered. I knew the details, and devised the plan. I needed more surgery, as the lumpectomy got all of it except 1 margin that was 'close'. I had to decide also on mast vs lump, and full node dissection or sentinel node bx. At that time, the SNB was quite new and not as widely used.

I saw the onc and rad onc to get their opinions on plans, then got some tests for staging (bone scan, chest xray, etc) and took all of them to the cancer center at Univ of Michigan to get a 2nd opinion at their clinic. They confirmed what all the other docs said, but supported the SNB (first surgeon was not in favor of it for me). I took a couple weeks then to make a decision...so in all, a month passed from point A to B.
Please ask the surgeon what time frame you have. Usually with breast cancer there is a little time to research and make decisions. Not everyone agrees, but I got great information from Dr. Susan Love's Breast Book. I read whatever I could related to my situation, and it helped me ask the right questions and understand the answers. I made lists of questions and took a tape recorder and a friend to my appointments. The recorder was invaluable, and it is my #1 suggestion. My #1 1/2 suggestion is a second opinion. You are being faced with some major decisions right now, and you want as much information as possible.

I had the 2nd lumpectomy and am lopsided, but I did not care that much. In clothes, you can hardly tell. Bra shopping is tough, but I got some that work. If you are not sure, I recommend going with the least amount of surgery...you can change your mind and get a mast, but you cannot change your mind once you do get a mast. If you are sure, go for it and don't look back. Lots of the gals here had a mast or a bilateral mast and they do not regret it at all...just the key is to be sure in your decisions.

For me, information was power. I needed it to take control. You will figure out what you need to cope and be empowered, we all are a little different.

And SHerry, many of us here are several years out. It can happen to you too! You are entering a whirlwind right now, but there is another side. Chemo and rads are very do-able, and we'll walk you through when the time comes.

Hang in there hon!
Lori
Posted 12/8/2004 1:05 PM (GMT 0)
Sherry, I am so sorry to hear you have joined our club. I really can not add much to what you have already been told. I just wanted you to know this period of time in my treatment was the worst. I hated feeling like I was a victim. I felt like I had no idea what to do or where to go. Back then I had no computer. I am so glad you can come here for help. I have to tell you I was fortunate and had a really good Breast Disease Surgeon. I asked him to do whatever would increase my chances of survival. He sat me down and gave me his stats, and stats in general. The most important thing he did was make me feel like I had control again and together we could beat this thing. These are the things I found that you need, before you can make any choice at all. Gentle hugs Joyce
Posted 12/8/2004 1:19 PM (GMT 0)
Sherry, I can only echo the words of the other ladies here. You will get through this. As many of us has said, knowledge is power. The more you know about B/C, treatments, and surgery as it pertains to YOU the less fear you will have. I personally know this is true. There are several types of B/C and the process is different with all of them, but one thing is for sure we all come out the other end of it and we have survived. I only had a simple mast. choice. I had my right breast removed and had reconstruction started at the same time. That was in August of 2003. The reconstruction is not finished but next spring I should be done. It isn't perfect, but the decision was a good one for me. Another thought: for me the diagnosis of cancer actually turned into a blessing. It brought my family, friends and new friends together to help me fight this. It brought me closer to my faith. Prayer for me was soothing and calming. Do not ever hold things in. Share your fears, thoughts and joys with others when you can and let them share theirs. And, of course, we are always here. You can say things to us that you cannot to others that are close to you. We will hold your hand, wait with you, pray with and for you and we have a wealth of knowledge here in these lovely women that guide you. Hang in there. ((((((((HUGS))))))))) Candy
Posted 12/8/2004 1:59 PM (GMT 0)
Sherry, you have gotten lots of good advice, I had a mast with reconstruction at the same time. I had a tram flap. It's a great way to go if you want to look and feel more natural but a really slow recovery. I don't have any regrets though. That was in 2000. I live in Louisville, KY not too far from you. Maybe after the holidays we can meet for lunch! That's always fun to get real hugs. For now, good luck with your decision and I am sending cyber hugs and lots of prayers.

Sara
Posted 12/8/2004 3:13 PM (GMT 0)
Sorry that you have joined the club, but you will find this is a supportive group of women. We will be by your side through all the lies ahead for you. I had 6 mm tumor and had lumpectomy with radiation and tamoxifen 8 years ago. Treatments have come along way even in the time since I was diagnosed. You've gotten some solid advice from others who have gone the mastectomy route. So, I will just add my welcome to the chorus. Glad you found us. Take care and keep us posted on how you are doing. We are here for you. Hugs, Lauri
Posted 12/8/2004 3:48 PM (GMT 0)
Sherry

Sorry you didnt get good news. It is so hard getting the news and then having to tell the family, especially the kids. So many things will be happening and decisions have to be made. Do what is best for you....get as much info as you can because you are your own best medical advocate.

If we can help in any way, please ask.

Hugs

Cathi
Posted 12/8/2004 4:22 PM (GMT 0)
What a great thread this is!!! Sherry, you have gotten so many good responses, I don't know what more I can say. I was 58 when dx (diagnosed) eight years ago and from the old school where I felt cancer needed to be gone totally, so I told my surgeon to go ahead with the mastectomy after the frozen section so I didn't have to go back for more surgery later. After the pathology reports and knowing what I know now, I probably would have been a good candidate for the lumpectomy and radiation. But I wanted any cancer removed from my body. I had tram flap reconstruction seven months later. My daughter was 39 when dx, she took her time and did a lot of research on the internet. She was actually the one who found this wonderful group of women for me. She was given no choice as to having a lumpectomy, her lump was high on her breast and the drs were afraid it was into the chest wall muscle. Thank heavens it wasn't, but she had the mastectomy and immediate tram flap reconstruction. Her reconstruction and mine are matching just fine. I would not dance topless but then I wouldn't have anyhow. Many women who have posted have had lumpectomies and had to go back for more surgery because the margins were not clean, meaning the surrounding tissues still showed signs of cancer. It definitely is your choice and there are many choices to make. As you learn them, come and ask questions, there is someone here with just about every scenario. We will be as helpful as we can. I am glad Sara saw your post and answered you. If you can meet her for lunch, please do, she is a wonderful person. We had a group gathering in Louisville last May where we met her for the first time in person. There are four from our group living in Louisville. Did you check out the roll call at the beginning of the page? If not please do and you will find there are many from OH, KY, IN. We're here for you. Hugs Mary K.
Posted 12/8/2004 4:43 PM (GMT 0)
Sherry,

Welcome to our little corner of the world. Like you, I had the same choices, but I ended up with a lumpectomy. I lost approximately a quarter of one breast. My breasts are a bit larger, too. But in clothing I doubt that anyone can tell. My kids certainly can't, and they're adults.

You should also know that I went into this surgery thinking that I would have a lumpectomy and radiation, and that's IT. After the surgery they offered me chemo because of the size of the tumor and I decided to go for it, even tho my nodes were negative. The plus side is I have the satisfaction of knowing I did everything I could to prevent a recurrence, and I have better hair than I EVER had prior to chemo.

Hang in there, Sherry. We'll hold your hand through this whole thing.

Hugs,
Rita
Posted 12/8/2004 7:04 PM (GMT 0)
Hi Sherry,
Sorry to see that you've joined the BC club. I saw your original post and could relate so well. I was diagnosed at 39 by a routine mammagram. I had a 2 cm lump and two positive nodes. I had a lumpectomy, chemo, and radiation and am one month away from my five year anniversary. You've gotten excellent advice so far. The only thing I'd like to add is my fervent recommendation that you see a medical oncologist before you make any surgical decisions. They are really the cancer experts and will know all of the stats and pros and cons of lumpectomy vs. mastectomy vs. bilateral mast., etc. I was fully intending to have a bilateral until I talked to my onc. I haven't regretted having a lumpectomy although there has been some down side to it. In the last five years I've needed three biopsies. One on the cancer side and two on the non cancer side. All were negative which is good but they were emotionally taxing to deal with. One other thing you might consider is getting into a study of some kind. Very often you can get cutting edge treatment and you often get more attention too. That's another thing to ask the oncologist about. This is such an intense time. Take a deep breath and take your time making your decisions. Once you've made them, full speed ahead and don't look back. You've come to a good place for support. There are many wonderful women here with a wealth of experience and who know just how you are feeling right now.
Carole
Posted 12/8/2004 9:09 PM (GMT 0)
Sherry- I am so sorry for your news.... I know this is like being hit by a truck at this point. You have every reason to be terrified, I remember my first few days here I thought everyone knew so much and I really didn't want to join this "club" at all!! But just take it day by day, cry when you need to, and try to get rest when you can, even if you tell yourself "I am not going to think about this for 60 minutes" and try to get thru that next hour.
I remember saying I felt like I had taken a crash course in Breast Cancer 101. So much to learn, digest and absorb. Don't do it all in one day, or one week, and DON'T READ ANY SURVIVOR STATISTICS!  You are not a number, and statistics in books are old anyway....with all the new research and available in the last 5 years the numbers are improving.


I was dx in 2001 at age 34 with stage IIb, 4.5 cm tumor, 5 of 49 lymph nodes positive. I did have a bilateral mastectomy because they told me before surgery that i had a 1 in 5 chance of getting cancer in my other breast. I did write a letter to my insurance company, and my onc did as well, and it was covered, no problems. I chose at the time not to have reconstruction, (partly because i was totally overwhelmed by all the different choices and felt i couldn't make an informed decision so quickly) and I have never had the recon. done. I just put my prosthetics in my bra, and go on with life. No surgeries, no complications, no implants... for me that was the right decision. But I do believe I'm in the minority on that !

I am so sorry you are hurting right now, if you want someone to talk to ... please let me know.

Hugs

Stefanie

Posted 12/8/2004 11:24 PM (GMT 0)
To all of you wonderful ladies, thank you so very much for your support and encouragement. I felt empowered enough this morning and got on the phone with my family doctor who sent me for my mammo and i couldn't believe they didn't even send him my biopsy report. Typical for some surgeons though lol.

Anyway, within a period of six hours, my doctor and his nurse got me set up with a breast surgeon specialist and an oncologist at a major breast cancer center in Nashville.  To top it all off they are not on my insurance network but have worked it out with my insurance company to pay at the network rate.

I had been crying all morning because none of the places or physicians i wanted to use were on my insurance and once again God has intervened and is taking care of me. And they are going to see me tomorrow. Can you believe that?

I'm sure i will have enough knowledge to make an informed decision about what i want to do. I know there are some other tests out there to check my risk for recurrence and to see if it may be somewhere else.  I would have thought my surgeon that diagnosed this would have offered this but he didn't.

I am still anxious but feel much better having some sort of plan to start with.  I've always known that bad things happen but God is giving me the strength to get through this.  I will try to post tomorrow after i see my new surgeon. 

Thank you all again and Sara i would love to meet you sometime. My cousin lives in Louisville (her mom died 2 years ago from this disease) and she has been a great support for me too.

Staying  positive.........................Sherry

 

Posted 12/9/2004 12:28 AM (GMT 0)
Sherry:

 

You've been on my mind yesterday, since I so related to you.  I haven't been on, so I didn't know about it until now.  I am truly sorry you've been afflicted.  I remember first thing I allowed myself to think when I was told was "Oh great, now I'm going to have to be one of those brave survivors and probably have to go on those walks for life!!!  I couldn't even think about the real mortal issues that I was faced with.   I got into action mode, which it looks like you are doing.  It's very adaptive.  Just don't let anyone make you think because you're not acting sick that you're not feeling it later on.  Remember that!

 

As for wanting to stay informed, there are great books, but don't get crazy and buy too much, you could go broke at this sensitive spot in your life.  I've seen women (me included) do some spending after being diagnosed, be careful of that.  I was particularly dangerous at the bookstore.  I found one book a great reference for making decisions, giving the pro's and cons and really explaining what the things mean.  Please look up my profile for my email, and I will gladly respond to your email with the title and author.  I don't think I'm allowed to recommend reference material here, but I'm not sure.   

 

My situation and Rita's (ardee) mirror each other.  We were a week apart in dx, and treatment.  I wish you the same blessing of going through this with a recently diagnosed sister.  Maybe some others can steer you towards them, I'm not sure who they are because I've got a lot going on right now and can't give the board the attention I would otherwise.  I found that contact with women at my stage most helpful.

 

I was, as I said, 38, and went for the lumpectomy and sentinal node biopsy.  I also did chemo, a rather heavy dose of it, and radiation.  Do what you think will give you the most "safe" feeling, and of course, what you can live with.  I am truly glad they will work with your insurance company.  Mine was great, too, but I'm afraid we may not be in the majority.  I'm glad you don't have that worry.

 

I, too, did the surgery in a major city, the chemo was coordinated locally.  Doing the surgery at a major breast center gave me a very safe feeling.  I'm right with you on that one.  There are also sisters in Ky.  And we all go with you to your various doctor's appointments in spirit.  Please post often.  I want to be there for you.

 

I truly hope you find some comfort in these pages and find the love and caring I found.  These are amazing women.

Posted 12/9/2004 2:35 AM (GMT 0)
Wow, Sherry, you probably feel like you've been hit by a truck with all of the information you've been given. With this disease information is power. The more you know, the easier it will be for you when dealing with the medical community.

I have only one piece of advice - do only what is best for YOU. You're going to hear lots of different opinions about a plan of attack. Your surgeon will be a big source of good advice, but can only recommend procedures, not make decisions for you. A medical oncologist appt. is a necessity. Someone else mentioned this above. Radiation oncs. can really only help you with radiation protocols if that's what you opt for. It's a medical onc. who has tons of knowledge about chemotherapy protocols, side effects, etc. Take your time making yourself aware about what's out there for you. Take that deep breath I mentioned in my first post to you and get ready to go on the attack.

While you're doing that know how much we are here for you, urging you on and encouraging you to make YOU your first priority. You're starting the battle for the rest of your life. I know it sounds hard-hearted, but think only of what YOU need, not what your think will make another happy. I'm hugging you from here. Luci
Posted 12/9/2004 3:43 AM (GMT 0)
I think you've gotten a lot of good input here, sweetie. You will do what is right for you. I think that insurance has to pay for removal of both breasts, if that is what you and your doctors decide is best for you. That wasn't the case way back in the "dark ages" when I had my mastectomy done, but the law has changed since then. Think that's all I have to add.

Best of luck to you.

Hugs...
BEV
Posted 12/9/2004 4:53 AM (GMT 0)
Sherry,

The gals that posted previously have given you such good advice. You are going to be so glad that you found our home here. I wish that I would have had it 20 years ago (at age 33) when I was DX'd.

Please know that I will be sending prayers and thoughts your way.

God Bless,
Debbie
PS. KEEP THAT POSITIVE ATTITUDE, THAT IS WHAT IT TAKES SWEETIE.
Posted 12/9/2004 10:15 PM (GMT 0)
Sherry,

 

It sounds like we have similar situations.  I had(have?) invasive ductal carcinoma and it was 6cm in size.  My surgeon was not the most informative and just gave me the choice of lumpectomy or mastectomy.  Since I am large, he said the outcome would be the same and it wouldn't look that bad, so I opted for the lumpectomy.  During surgery, he found that the cancer was also growing along the blood vessels.  Since we hadn't had a conversation about 'what if's', I needed another surgery (mastectomy) 3 weeks later.  The point I'm making here is - talk to the surgeon about all possibilities.  This will avoid additional surgery.

 

I only had 1 positive lymph node, thank goodness.  I am in the camp of no reconstruction.  I just got my prosthesis and bras yesterday and it isn't bad at all. 

 

Keep your positive attitude and you will get through this just fine. 

 

Sending hugs your way....................

Posted 12/9/2004 10:36 PM (GMT 0)
 

Well, I did the right thing to find another surgeon. I went to The Nashville Breast Clinic and all they do is breast cancer. I left there with more info than i thought. This surgeon sat and talked with me about every possible situation. She was wonderful. She actually ordered bloodwork, did an ultrasound right there without having to set up another appt. I will be having the genetic testing and i have decided that will help me make my decision on what i want done. She said most likely due to my age that I will go through some chemo but im trying to not let that scare me. I hate my hair anyway-maybe it will grow back better. LOL. I see a rad onc on the 13th and oncologist on 15. I am so fortunate to not have to wait weeks for these appointments. I know i am the minority in this case. I'm feeling much better after my appt today than i have felt in days. I do know that some days it will hit and i will allow myself a self-pity party as long as I don't linger in it.

 

I think alot of my attitude I have right now has been from talking to all of you wonderful sisters who have and are going through this. You are all miracles and I hope to one day be able to comfort someone else just like you have all done for me.

 

Well, the weekend is coming up and its time for kids and baking goodies for friends, school, etc. but I will pop in from time to time and check on everyone else. My daughter who is a senior this year (boo-hoo) has a school play tonight that im going to. I refuse to let this disease stop my life. My other children are 12, 10, and 5. So needless to say, Santa has alot of work to do.   

 

Love and hugs to you all.............Sherry

 

 

 

 

 

 

 

 

 

 

Posted 12/10/2004 12:04 AM (GMT 0)
sherry-
A Treatment Plan and a good oncologist will empower you tremendously, and you sound like you have found that very thing. GOOD FOR YOU! You bake those cookies, and forget about this for a little while....you have a great attitude and that will help you so much at a time like this! Enjoy your children (4 chlidren? whew! i, having 3, admire anyone with more! ha) and check back with us soon.

Hugs,
stefanie
Posted 12/10/2004 3:57 PM (GMT 0)
Sounds like a great plan to me, too, as Steph said. Enjoy baking and forget for a little while............ Hugs MK
Posted 12/10/2004 5:01 PM (GMT 0)
Sherry, I was going to say just what Stef said...about being so empowered by having information and a plan. I cried every day for a week, until I met with my surgeon for the path report. When I left there, I had a plan to see the onc and rad onc, plan to get various tests and blood work done and made a 2nd opinion appointment. Having all that, I felt totally in control and it made my situation better.

Enjoy the baking!
Lori
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