Just Diagnosed 03-17-05

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.

 

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

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-
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

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.......

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

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

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

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

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,

 

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

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

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