Just Diagnosed 03-17-05

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janismarie
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Date Joined Mar 2005
Total Posts : 44
   Posted 3/19/2005 8:58 AM (GMT -7)   
I am 57 (until May), live in North Carolina, divorced with adult daughter who lives in D.C.
Never thought I would be here, but had bad mammogram in January and had surgery on 3/9/05.  They thought I had atypical ductal hyperplasia.......100% recovery.......but when the biopsy came back, they found 1.2 CM of infiltrating lobular carinoma.  I am having 2nd surgery in April.  This kind of cancer does not show up on mammograms and it can't be felt.  Only showed up on pathology report.  Probably will have MRI to see if it shows up on that.  Has anyone had any experience with this cancer?  I am still stunned. ...........completely stunned.  I just don't know what to expect.....he did say cancer drug and radiation for sure, but not sure about chemo, until after he does the operation.  Any comments will be greatly appreciated
 
Thank you.
 

Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 3/19/2005 9:40 AM (GMT -7)   
Hi JanisMarie-
Welcome! Sorry you have gotten this news, we definitely know how shocking and devestating it can be. Others here have lobular carcinoma, but most have a ductal carcinoma. Nurse Mikki also had lobular, and she posted a link to her great website on one of the recent threads to another new member.
There is much you do not know at this point, which will be needed to formulate the plan. They will need to know more about your cancer in terms of where it is and the traits it has, and whether they can get it with surgery or not. The cancer drug may be Tamoxifen or another oral hormonal based pill, which is not so bad, and can offer you protection from recurrance. Chemo will depend on a number of factors, but we'll help you through it if you need chemo.

We have Glenda and Stef who are also in NC, so you might be able to get a real buddy in your area. Lately it seems our new gals are in areas where we are too.
I would also recommend taking a friend and a tape recorder to the early doctors' visits, you will not likely absorb everything they say at first. Survival rates for BC are very high, and there is no reason to think you can't beat this too!

Jump in and ask questions wherever you can-
Lori


ardee
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Date Joined Sep 2003
Total Posts : 854
   Posted 3/19/2005 12:19 PM (GMT -7)   
Hi Janismarie,

It's a real jolt, isn't it? I'm so sorry that you're going through this. I had DCIS (ductal carcinoma in situ), so I can't give you any insight into your particular type of bc. But I am sending prayers that you find the help and strength you need to get through this.

Hugs,
Rita


MNlady13
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Date Joined Jul 2003
Total Posts : 2044
   Posted 3/19/2005 3:04 PM (GMT -7)   
Hi, Janismarie, Lori has covered all the bases. I know how frightened and confused you must feel about now. We all have been there at one time or another. So you are in terrific company here. And, these are some of the nicest, most supportive women you will find anywhere. Ask anything any time and you will probably find someone who has good advice for you. You will get though this and we will all be right by your side the whole time. You are not alone. Welcoming hugs, Lauri (in Minnesota)
"Go confidently into the direction of your dreams. Live the life you always imagined" Thoreau
 
Life is not measured by the number of breaths we take, but by the moments that take our breath away.


gma
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Date Joined Jul 2003
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   Posted 3/19/2005 4:58 PM (GMT -7)   
Hi and welcome from Texas. Sorry you had the need to find us, but I am glad you did. Lori has told you there are some others in NC and with lobular. Did you notice the roll call at the top of the main page? There you will find a little info about most of us and also some pictures. Get acquainted with us and when you are comfortable tell us a little more about you. I was 58 when diagnosed, now 8 years ago. We also have women in various stages and from 20 years diagnosis to newbies like yourself. Hopefully we can help you with just about any question. We share hugs and prayers and have a make believe Pink Cloud Express PCE to be by your side in spirit should you need us during an appointment or surgery or treatment, or anytime, actually. Hugs Mary K. (MK)


janismarie
Regular Member


Date Joined Mar 2005
Total Posts : 44
   Posted 3/19/2005 9:34 PM (GMT -7)   
Thank you all for responding.  I have decided to keep a journal abought all of this, maybe helping those going thur the same thingl  I am definitely having big surgery........even going under my arm.  I am my sould provider and the money issue scares me too.  It is just something I am going to have to do and y'all give me faith and hope.

Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 3/20/2005 8:28 AM (GMT -7)   
Janismarie-
Most of us had lymph nodes out too, and yes, it can be harder than the breast surgery. You may want to ask about a sentinel node biopsy, which is not right for everyone, but can spare you much pain and greatly reduce the risk of lymphedema in the future.

Lori


coopfesta
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Date Joined Sep 2003
Total Posts : 1373
   Posted 3/20/2005 11:00 AM (GMT -7)   
Janismarie:
 
I'm so sorry you're going through this, but glad you found us.  One thing I found when going through treatments was the fact that you get comfortable with the words, when no one else does.  I found that my family wasn't so comfortable talking to me about it, yet it was stuff I had to do, so I was able to deal.  It was strange that way.  I kept saying "I can't belive I'm doing all of this" all through it.  I made it through, though. 
 
Please continue to post and let us know how you're doing and ask away, there's usually somebody to answer you.
"Our greatest glory is not in never falling, but in rising every time we fall." -Confucius

Ellen


janismarie
Regular Member


Date Joined Mar 2005
Total Posts : 44
   Posted 3/20/2005 1:26 PM (GMT -7)   
Thanks everyone for your support. I have stayed in all weekend until today......the first day of spring.....I went out to the grocery store and bought $138.00 worth of food, including 2 bottles of wine. I do remember my Surgeon saying that they all meet on Monday nights and go over all cases and he knew there would be one Doctor who would say I needed a mastectomy, but he did not think all others would agree. Little bits of our conversation are just now coming back to me. He did say something about putting blue die in regarding the lymph nodes. It that the sentinel node biopsy that Lori mentioned? I have been on the computer all weekend, reading about Invasive Lobular Carcinoma. Is this a common type? I was thinking my doctor said it was not. I really feel like I should do something, but I don't know what. I am just waiting.......but I don't know what I am waiting on. Can ya'll give me some ideas about what I should be doing? I had absolutely no trouble with the lumpectomy. I feel I could have gone back to work the next day, but had the surgery on Wednesday and went back to work on Monday. How long is the recovery for most?......Do I need someone to stay with me? Is there a place I can read about what really happens?....My Surgeon is with the Blumental Cancer Center in Charlotte and he is supposed to be one of the best. I can't remember if he said he would call me after their meeting tomorrow night or not. I think I heard the word cancer and went deaf!......Thanks everyone for listening to me ramble.......

MNlady13
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Date Joined Jul 2003
Total Posts : 2044
   Posted 3/20/2005 1:38 PM (GMT -7)   

Hi, again, that inability to remember things is exactly why we tell women to take someone with them when they talk to the doctors. Once you hear that fateful word, the whole system seems to shut off. If you have no one to go with you, a tape recorder makes a good buddy.

I do not know the incidence of lobular carcinoma. Mine was ductal. I had lumpectomy with rads and tamox. Statistics show that survival rates are just as good with lumpectomy and mastectomy in early cancers. I had lumpectomy, took two more days off work and was back on the job with my drain tucked up under and oversized shirt. Yes. injecting the blue dye would be part of the sentinal node procedure. Good luck. Hugs, Lauri


"Go confidently into the direction of your dreams. Live the life you always imagined" Thoreau
 
Life is not measured by the number of breaths we take, but by the moments that take our breath away.


ardee
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Date Joined Sep 2003
Total Posts : 854
   Posted 3/20/2005 8:02 PM (GMT -7)   
Hi Janismarie,

I, too, was a single provider, and it is a very dodgy situation. I chose to stay home because I was teaching elementary-aged kids (AKA walking petri dishes). If you have to go on chemo, you need to know that it wipes out the immune system and leaves you pretty vulnerable to colds, flu, and infections. But you do bounce back quickly. I guess it depends on whether you have disability insurance and/or work where you come into contact with lots of germs.

Good luck. I'm sending prayers your way.

Hugs,
Rita


debbiR
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Date Joined Feb 2005
Total Posts : 730
   Posted 3/20/2005 8:36 PM (GMT -7)   

Hi Janismarie! You have received some great advice from everyone. Aren't these the greatest gals?! I believe that you will find that keeping a journal will really help you thru this. Also, when you are all finished with treatments, and you go back and read your feelings throughout this journey, it will amaze you at how far you have come and how strong you are.

Since you are confused about tomorrow, why not call your surgeon's office in the morning and ask when you can expect a call from him. Then you won't sit around all day, waiting on the phone to ring and basically going nuts. Also, make sure that you have someone there with you so they can hear what is said and make some notes for you.

Good luck tomorrow. Lots of prayers and positive thoughts being sent your way.

Hugs

Deb


 


janismarie
Regular Member


Date Joined Mar 2005
Total Posts : 44
   Posted 3/20/2005 9:14 PM (GMT -7)   

The Surgeons review committee dont' emtt until tomorrow evening, so I know he won't be calling me until Tuesday,  But, his Breast Cancer Coordinator, Susan will be in and she gave me her private number.  I think I will call her and ask her my list of questions.  She is an RN and I am sure she has people going through this everyday.  I know she can help me. I hope I am not sounding like a baby..this is all so new to me and I was nto expecting any of this.  I was totally useless at work Thursday when I returned from Charlotte and most of Firday.  But, I am going in tomorrow with determination that I am not going to let this get me down.  You girls have been wonderful and I am so lucky that I just stumbled on this site.  I will be asking more questions and letting y'all know of my updates.

Hugs and kisses to you all.

Janis


debbiR
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Date Joined Feb 2005
Total Posts : 730
   Posted 3/20/2005 10:51 PM (GMT -7)   
Janis:
 
Don't ever feel like you are acting like a "baby". We have all felt the same way that you are. When I went for my mammo after I found the lump, it was 7:00 a.m. and I had to pick up a client for a job interview at 8:00. I didn't feel that there would be a problem but the time kept passing after the tech said that she was going to make sure that the film was good. I kept thinking that I needed to leave and get my client yet knew that I had to stay. Finally, the tech came in and said that the films were fine and that the radiologist had written the report and faxed it to my md. I knew that I was in trouble because it is never written that quickly. I went to pick up my client and he wasn't even there. I then went and told my boss that I thought I had bc and didn't think I could work. I did see my md that morning but was useless for the remainder of the week. It was like I was walking in a fog. So, you see, you aren't alone. Once the fog lifted, I found that keeping busy, keeping proactive in all of the decisions that were made concerning the surgery, choice of surgeon, chemo, etc. kept my sane. The one thing that did drive me up the wall was the phone constantly ringing or people coming over if I didn't answer the phone. We all know that they mean well but there are times that we need time just for ourselves. Don't be afraid to take or demand that time. I hid out a couple of times at a friends house.
Do what you think is best for you. Remember, you have the final say and I know that you will make the best decision concerning your care.
Hang in there. Remember, you can always come here and vent, scream, cry or just laugh.
Hugs
Deb
 


gma
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Date Joined Jul 2003
Total Posts : 2921
   Posted 3/21/2005 12:29 PM (GMT -7)   
Great post, Deb. It is wonderful to see new members do such a great job of assuring other new members. Sometimes those of us far out from treatment are not so current. So glad you joined us here. Hugs MK


debbiR
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Date Joined Feb 2005
Total Posts : 730
   Posted 3/21/2005 2:10 PM (GMT -7)   

Thanks MK. That is so nice of you to say. I had forgotten what it was like to be a member of an "active", caring board where the members are no one but themselves. It is great!

Hugs

Deb


 


sdearing
Veteran Member


Date Joined Jul 2003
Total Posts : 700
   Posted 3/22/2005 8:15 AM (GMT -7)   
Hi there, just catching up on the boards and not sure what I can add except to say you will be in my prayers and welcome.

L&H
Sara
Sara Dearing
 
Today is a gift, that's why they call it the present!


Skky
Regular Member


Date Joined Mar 2005
Total Posts : 146
   Posted 3/22/2005 4:33 PM (GMT -7)   
janismarie-
I'am also newly diagnosed, and just want to say we can do this. I will be praying for you
Michelle

MiaB
Regular Member


Date Joined Feb 2005
Total Posts : 205
   Posted 3/22/2005 5:19 PM (GMT -7)   
Hi Janismarie,
 
I was diagnosed Jan. 24 with invasive lobular carcinoma from a lumpectomy. I had the option of a full mast. or partial to get more of the tissue to make sure there were clean edges.  I opted for the partial since I figured if we didn't get clean margins we could go back and do the full later.  I had the surgery with lymph node removal on Jan. 31, wasn't given the option of sentinel but I'm not sure why.  Maybe the surgeon doesn't do it but it was never mentioned even though I had already read about it.  I wish now that I had asked for it.  The breast incision was about 4 inches across the top right portion of my breast and the lymph node incision was only about 2 to 3 inches long and it is below the area that hair grows. Yes, the breast incision hurt but the lymph node incision was worse.  I had a drain for 5 days.  And the healing from the lymph node surgery took the longest.  Until about 2 weeks ago I felt like I was walking around with a tennis ball under that arm.  And I still have numbness there. My tumor was 1.6 cm. and all clean nodes.
 
I'm not trying to scare you or anyone facing this surgery.  I'm just trying to let you know what can be expected.  They have to move or damage some nerves to get to the lymph nodes and it can take quite a while to get the regular sensation back.  So the sentinel option sounds like it is better.  I'm not sure how prevalent it is though. 
 
I had a genetic test done called Oncotype DX, it's fairly new and costly but helps to determine in certain instances (must be pre-menapausal, estrogen & progesterone receptor positive) what the chances of a recurrence are.  I scored a 3 out of 100 with lower numbers meaning less chance of it coming back.  So my onc. gave me the option of not having the chemo.  I didn't, and I started a 6 week course (M-F) of radiation yesterday.  That is a breeze so far but most women don't have any problems until much later in the treatments.
 
You have a lot of decisions ahead of you and no one persons experience will be just like yours.  Do your research on each choice then make your decision and don't look back.  We are all unique in the way we handle things but one thing I think helps is a good attitude.  It may take you time to get there but one day you will wake up and say "i'm going to be ok, I can beat this!"  And when you do that you will face each day stronger.
 
I'm sorry you are dealing with this but as others have said before me we are so glad you found us.  This site has helped me tremendously!  Just reading posts from the women who have survived for 10 or 20 years helps to remind me that this is do-able.  There are a lot of caring people here and we want to help.  So please ask questions and keep us informed.  We will all be there on the PCE (Pink Cloud Express, the imaginary transportation we use to be with you when you need us) whenever you want.  And sometimes these goofy people come to be with you even when you don't ask.  So keep your eyes open for pink feathers floating around you (we wear pink feather boas while on the PCE)
 
With loving hugs and prayers,
 
Mia
 
Snowflakes are one of nature's most fragile things, but just look what they can do when they stick together.


-Vesta M. Kelly


janismarie
Regular Member


Date Joined Mar 2005
Total Posts : 44
   Posted 3/22/2005 9:27 PM (GMT -7)   
Thanks everyone so much........Mia, thank you for being so frank and telling me what to expect.  You can't imagine what this means to me.  I talked to the Surgeon's assistant today and asked her all of those questions I wanted to ask. I am having an MRI on both, hoping the tumor will show up.  They do not expect to do a mastectomy, thank goodness.  I will be having the sentinal (not sure of spelling) node thing, so that is good too.  If everything goes well, if I have the surgery on Wednesday, is it possible to go back to work on Monday?  Am I hoping too much? My boss has been wonderful and says to take all the time I need, but if I can stand the pain, I want to get back to work ASAP and not let this get the best of me.  I will continue to keep you informed of what goes on.
 
Love to you all.........Janis   
Janis


Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 3/23/2005 4:56 AM (GMT -7)   
Janise, yes, the blue dye is part of the sentinel node biopsy. My node biopsy scar is only about an inch, and it is off to the side of my breast, toward the armpit. They use the dye to trace the path of drainage, so we all have the sentinel node in the different spots. Mine used a radioactive tracer too, with th blue dye. That injection hurt more than any other part of the recovery.
Please consider taking a tape recorder and a friend to the appointments. It is great to go back and listen later, for reasons which you understand.
If you are not sure of the best surgical plan, consider a 2nd opinion at another place, it can't hurt. And lobular carcinoma is not as common...I think only 10-15% of BC are this type. Glad Mia has experience with this kind too, having support from those in the know is priceless.

Hang in there!
Lori


janismarie
Regular Member


Date Joined Mar 2005
Total Posts : 44
   Posted 3/23/2005 1:15 PM (GMT -7)   

Well, I got the call I have been waiting on.  My MRI is Tuesday, April 5th at 10:00 A.M., surgery is on Wednesday the 13th at 8:00 A.M., but have to be there at 6:00 A.M.,  and already have a post op appointment for Thursday the 21st. So..... 3 weeks from today,at this time,  I will be on my way to recovery.  Y'all have helped my attitude about this so much........I feel better....this weekend was really the pits and I know this isn't going to be easy, but I think I am ready.  Anyone want to tell me a little about 6 weeks of radiation?  It is better to do in the morning before work, or after work?  I am an office manager, so I sit all the time.........mostly working on a computer.  I don't know if I can really pick when, but if I get to, which do you recommend.  What should I expect?

Love all of you,

JANIS

 


Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 3/23/2005 1:55 PM (GMT -7)   
Janis, I was able to pick my time, but you may not be able to pick exactly. I got the 7:15 slot, earlier is better becuase there is less chance they are backed up or delayed. After rads, I applied deoderant and aloe gel to the breast, got dressed and went to work. THat worked out perfectly for me.

Everyone will respond to rads differently. You may burn and blister or you may just get a little pink, but probably somewhere in between. I had no problems with my skin and had no limitations in clothing or other activities. But most of us agree that active treatment is empowering, as you feel like you are really participating in ridding the cancer.
Lori


janismarie
Regular Member


Date Joined Mar 2005
Total Posts : 44
   Posted 3/23/2005 2:02 PM (GMT -7)   
Cool, thanks Lori. yeah
Janis


debbiR
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Date Joined Feb 2005
Total Posts : 730
   Posted 3/23/2005 3:44 PM (GMT -7)   

Janis:  Radiation isn't a difficult treatment. As I have said in the past, it takes longer to get undressed and into the gown than it does to have the treatment itself. One side effect that you may experience, as the treatments progress, is being tired. So, you might want to take that into account when deciding what time to schedule your treatments. I had very little problems with radiation until it was totally completed. The rad continues to burn from the inside-out. So, I had some blistering a week or so after the treatments were stopped. I used the gel packs during treatment to help pull the heat out of the skin. They were fantastic!

Hugs

Deb


 

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