Please educate me, some confusion

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Roxie1
Roxie1 Member Posts: 19

From reading here and trying to wrap my brain about all that is new to me here. I'm having to read and re-read to try to retain.

If  I'm I understanding this corectly, the grading system : Grade 0 would be no outside the margin invasion, Stage 1 would be outside the margin, Stage 2 would be lymph involvement, Stage 3 is bone and stage 4 is mets in the vital organs?

 Grades 1, 2, 3, are how it's determined how quickly the tumor grows or how quickly the cells divide?

 I've noticed on the bottom of some of the ladies posts that is confusing me, there are some with 1cm to 6 cm tumors with no node involvement and others with smaller with node involvement and the grades are different. Another thing I don't understand is how there can be no lymph involvement with a higher stage level and visa versa. I hope I'm making sense, just trying to understand.

 ALSO, I'm seeing 0/1 node involvement to up to (for example "can't remember" but something like-----6/20.

I know when I go in this Tuesday the Doc said he was going to remove one sentinal node to send with the wider margin of tissue back to pathology. My question is that if the one sentinel node they remove comes back positive will they have to go back in AGAIN and remove more nodes ?????

I remember when they did the mammo they have me position my arm to be able to see the nodes on the mammo, nothing came back on the mammo in reference to anything suspicious on the nodes.

Hope I'm not being a pest with all these questions but any info would be sincerely appreciated.

 Another thing.....Not that I'm considering it but I did ask the doc<I kinda freaked about the radiation and possible chemo process> If someone would just "stop" the process of where I was currently at, what would be the possible results. He said that there was a 17% chance that it would recur. I'm not saying that I'm considering this but was just curious if anyone or anyone knows of anyone who stopped the process after the lumpectomy and took their chances.

 Also once all the follow up care is completed, radiation, possible chemo, tamoxifin, are you still considered to have cancer or considered remission or cured.

 My living at home 22 year old son posted on FACEBOOK what is going on with me and I'm PISSED, I'm a very private person and I wanted it to be MY CHOICE of if or when I would let others know. He did not ask me first and some people are now treating me like I'm "on my way out" and this has got me more in a funk than what I was previously trying to cope with. I'm glad he's gone for the weekend becase I'm mad as sin!

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2012

    Hi Roxie,

    We can help you with the Grade and Stage confusion. Check out the main Breastcancer.org site and the Cell Grade page, and the Stages of Breast Cancer page. Also, there's some good info on Lymph Node Involvement and what that means. In addition, the Sentinel Lymph Node Dissection section can tell you what to expect, what it may show, and what happens with results.

    Wish we could help with the Facebook issue! For now, take a deep breath :)

    Hope this helps!

    --The Mods

  • docziggy
    docziggy Member Posts: 17
    edited May 2012

    Hey Roxie -

    I'm so sorry to hear about the Facebook issue - that is not cool at all. I too have had people suddenly treat me like I'm either made of glass or on the verge of death since my diagnosis. I keep reminding them that I was climbing and running and teaching full time with the tumor BEFORE anyone said the magic C word and did I look like I was going to drop dead?? It's very frustrating and even pointing out that I'm NOT now made of glass has not helped with some people. Example: family relation by marriage who sat through a dinner sighing and giving me soulful, sad puppy dog eyes constantly and asking about every 10 minutes how I was feeling .... ARGH! <sigh> If anything, this behavior just makes me even more determined to beat this thing, just to prove to those people that you can survive this! If you figure out a way to let people know we're not "broken", let me know! 

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited May 2012

    Cancer, unfortunately, doesn't follow a straight line.  You can be  node negative (as I was ) and end up Stage IV (as I am).  You can be Stage IIIc and live for 40 years.  You will find a lot of us say "it's a crapshoot "and that's because it is, there is no rhyme or reason to it.

    All those stages do is tell you certain things about your tumor size and where you stand today, and it gives you a hint about your prognosis, but not any guarantee.  

    The grade shows how fast and abnormal your cancer cells are - the worst being grade 3.  The faster it grows the higher the chances that it has moved past the breast.

    I had a sentinal node biopsy at the time of mastectomy.  (I had to have a mastectomy and not a lumpectomy because I had more than one spot of cancer in several areas of the breast - multicentric and multi-focal).  The plan was to take the sentinal node and biopsy it while I was on the table.  If they found cancer they would remove more nodes until they found pure ones,  and then do the mastectomy.  They took three nodes, found nothing, so just did the rest of the procedure.  I am not sure what they do if they are not doing a mastectomy.

    It is not guaranteed you will need chemo or radiation but once you are done with all of your treatment, you are considered NED.  No Evidence of Disease.  You are not considered cured because breast cancer has a way of returning, sometimes even years later.  However, depending on the type of cancer you have, the odds of that happening might be very small. 

    Other questions you should ask aside from size, grade, are is your cancer ER+ (does it grow in response to estrogen?)  If so, you will probably be put on an estrogen blocker like tamoxifen.  Is it HER2+?  (It grows in response to a specific protein and there is a treatment for that called herceptin, but it is given in conjunction with chemo).  Can you have a lumpectomy or must you have mastectomy.  What are your options for reconstruction and who is he going to refer you to?

    As for your son, that was quite rude that he posted that without your permission.  People do funny things in response to cancer.  I told my boss when I was first diagnosed.  Confidentially.  She announced it at a staff meeting.  I could have gotten her fired for that but I didn't as she was my friend, but it's not good to have the news taken out of your hands.  Anyway, make sure you don't tell anybody you don't trust.

    I know one woman who didn't do treatment; she believed in alternative therapies.  I'm sorry to say that she died after 3 years.  She was only Stage 1 too.  Please believe in the dangerousness of what you are going through. That doesn't mean you won't live a long life - most people end up living out their normal lifespan.  Don't give up hope and think you have been given a death sentence because I know people 20 years out.  But, it isn't something that can be ignored.

    Chemo/radiation - it's not as bad as you think and it's nothing like the movies.  You may not have to do it but if you do, you can manage it.  I've been on chemo for 2 1/2 years straight and I still go to work every day.

    Good luck to you. 

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited May 2012

    I think maybe your son is worried about you, but rather than admitting it to you he is posting on FB hoping that someone will respond in a positive way so he will feel better.

    Could that be the reason he did it? 

  • kt57
    kt57 Member Posts: 425
    edited May 2012

    Roxie1,

    You will never, ever be a pest here.  This is a place to ask/say anything on your mind.  A place you will always find support.  It was a true lifesaver for me when I was where you are now.

    Breast cancer is not one disease. It is very individualized.   All the numbers are confusing.  Basically, yours will come from your pathology report - the microsopic study of your tissue. That information helps your surgeon and oncologist recommend your personal course of care, type of surgery, chemo radiation.  That treatment is based on research of what has proven to decrease your chance of recurrence or spread.  Can there be a "cure"? NED - no evidence of disease - is preferred by the health care community, who are reluctant to promise a cure.  Do keep in mind, there are sure a great many of women who have lived a long long life cancer free after having breast cancer.  

    re the Facebook thing:    At 22 you hear "mom has cancer"  and fear the worst.  He may have been reaching out for support - not 'spreading the word".   Your cancer effects everyone important to you.  Sometimes I think my cancer has been harder on my family and friends than it has been on me.  They feel helpless.   Be patient with him.. he needs you..and he's probably worried/anxious about what this all means.    I know my 20 year was.

    ((((HHUGS )))))) to you.   You will get through this!

  • Jubby46
    Jubby46 Member Posts: 16
    edited May 2012

    Hi,

    Sorry to hear about your facebook experience. I am on facebook and play farmville. I have a group of friends now that are like family. For me these people were my rock. I got so much support it kept me sane through the whole thing. Women came out of the woodwork with their cancer stories. When I went for core biopsy and sentinel node test and then for surgery I had hundreds of spirits with me. Without them I would not be so positive. I would be crawled up in a ball staying in my room. I Don't log on much but my friends have not abandoned me. Don't be too hard on your son. It is possible he needed some comfort himself. He may have gotten some support he needed because he is hurting too. Just a thought.

    take care

  • ginger_mea
    ginger_mea Member Posts: 264
    edited May 2012

    Hi,

    Sorry to hear all this, and I agree with all the advice.  For me my BS took out the sentinal node during 2nd lumpectomy along with margins he sent it to pathology while I was on the table, it was negative, if it was possitive he would have continued until he got to a clear one.  Ginger M.

  • kawee
    kawee Member Posts: 324
    edited May 2012

    Ginger,

    Your cancer sounds like mine.  Grade 3, HER2+.  Mine was 1mm invasion with no lymph node involvement.  It has been 3 years since my treatment.  Just wondered, did you have chemo.  The tumor board didn't think it was necessary for me.  Now, I am dealing with lymphedema, which just came on about 4 months ago.   

  • ginger_mea
    ginger_mea Member Posts: 264
    edited May 2012

    Kawee - yes I did have chemo, rads, herceptin and now AI's. 2 lumpectomies.  The tumor size was right on the mark for chemo. Rads was already set for the first cancer which was DCIS, then the 2nd one IDC changed it all to chemo first.  The prevenative Herceptin because of the Her2+ and the A.I.'s for estrogen +++

    WOW I didn't know lymphedema could come on so much later after all this? how did it start? how did you find out it was it?

    Ginger M.

  • kawee
    kawee Member Posts: 324
    edited May 2012

    Ginger,

    I noticed some swelling on the outside of my breast and a little under my arm.  Well, that was really scary, so went to my breast surgeon, who sent me to lymphedema thereapy.  Now my arm has swelling in it at the elbow and while wearing the sleeve, my hand started to swell.  Now they have ordered a sleeve, gauntlet and a compression bra.  

     Apparently lymphedema can develop at any time, even years later.  Thing is, I really didn't pay any attention to the "don't lift anything over 6 lbs., don't have blood pressure taken in that arm, don't let them take blood from it either".  Thought I was at low risk due to only l node removed.  Guess radiation plays a big factor.  Don't know if  not following their advice contributed to the development, but anyway, here it is.  Thereapist says it's mild but still have to do all the "stuff" to control it. 

    Sounds like you've been thru alot.  Are you finished with everything?  I'm over 3 years out now and seem to be doing fine, well except for the lymphedema.  All I decided to do was 2 surgeries and rads.  They (Onco, BS) left it up to me on the treatment, as the size (1mm) was so small.  They said I was at very low risk.

    Hope all is well with you and that everything is behind you now.

     

     

  • ginger_mea
    ginger_mea Member Posts: 264
    edited May 2012

    Kawee, thats good to know, not that you have it but the fact that it can come up later on.  I am all done with all treatments except the Aromasin (5 years to go, well a little less started it in Nov.)  I am feeling so much better now, I couldn't move past the whole diagnosis initially but through therapy I am so much better now, don't dwell on it anymore at all.  I have some side effects but they are bareable, the worse thing is the shoulder/arm/wrist on the surgery side. I always had a little bursitis but this is some much worse and all the time.  I am always taking advil, I am hoping it will get better with time, and I try to stretch it and move it as much as I can, its very tight. The Ortho said if bad I can come back for a shot of (can't think of the name of that drug they give everyone, chemo memory still not good) but anyway, I'm not sure I want to do that yet, will try to wait it out.  I do notice my watch is tighter and my rings, I can't sleep in and I use to be able to.  Oh well, I am happy to hear you are 3 years out, its always hopeful to hear. Ginger M.

  • kawee
    kawee Member Posts: 324
    edited May 2012

    Ginger,

    Do you know why your rings and watch are tighter?  I have quite a bit of pain in my hand, wrist and aching in my shoulder, but mine is all due to the LE.  Can't wear my ring anymore either.  Just keep a watch on that swelling.  I don't have near the flexibility in my arm that I used to.  The physical therapist gave me specific exercises for it and it has improved.  They say it's from the radiation.  I had cording also, but they broke all that up.  Now with the exercises and the manual lymphatic massage I do a couple of times a day it's getting better.  I wish I would have started the exercises alot earlier.  They said I should have started during radiation, but how do you know when know one tells you. 

     
    Anyway, it's been nice chatting with you and comparing notes!!! 

  • ginger_mea
    ginger_mea Member Posts: 264
    edited May 2012

    Hi kawee - I thought my rings and watch were tighter because of a s.e. from the AI? thats what I read anyway...

    Nice chatting with you as well have a wonderful day :)

    Ginger

  • RLCURLEE
    RLCURLEE Member Posts: 5
    edited May 2012

    Roxie,

    I understand you are upset about the facebook thing.  My father did almost the same thing.  He is a barber in town(small town) and was telling every one he saw.  I was so upset.  But, then realized that his motive was the more people he told the more people I had praying for me.  But, I did tell him to be careful who he tells and think before speaking. I have had a lumpectomy with clear margins, but not wide enough for the doc.  So, I have to have more surgery to make sure the margins are clear.  I'm still in the testing stage.   I know I will have to have chemo and rad, but not sure when.  I feel fine and really don't feel like there is anything wrong with me.  What I want to say is don't be to hard on your son.  That was probably his only way of handling his thoughts and feelings.  I don't think he meant to hurt you on purpose. My husband is so strong and couragous for me.  He is always speaking positive.  I will probably never know how worried he is, because he will never let me see that side.  But, I'm sure he talks to people about these things and I don't mind.  However, he needs to deal with it.  Roxie you are in my prayers and I pray that everything will work out just fine for you.  And, that you gain knowledge and wisdom on the things you are seeking.  God Bless you.

  • Jubby46
    Jubby46 Member Posts: 16
    edited June 2012

    Hi,

    Just started therapy 3 visits. I have exercises to do too. Wondering what the massage is your therapist gave you to do. I don't have a sleeve yet. We will try it out. I was swelling more doing the exercise machines she had me do so we will try a sleeve.

    Pretty bad day today. Have to watch the lifting and other stuff. She said no scrubbing, pushing pulling no this and that. Keep moisturizing. So I am doing that too. And no hot baths which I love. Risky are raquet sports, golf anything with sudden forceful action.

    Keep hydrated. Use electric shaver.

    Watch out for infection. She told me go to dr or ER immediately if infection in my right arm. Infection can spread to tissue and through body quickly. Scared the life out of me.

    I hate this whole thing.

  • schatzi14
    schatzi14 Member Posts: 1,647
    edited June 2012

    Jubby46

    Me too...am trying to ignore it. When my arm gets heavy or I am doing something that can irritate it, then I wear the sleeve...other than that, I don't. Probably wrong but so far it works for me. I keep forgetting to wear gloves when working outside but am careful about any cuts, hangnails etc. I go through a lot of polysporin. 

    Oops, I think we are on the wrong topic.

  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2012

    Roxie - I agree with others that I think your son was just looking for support. When I told my son I had BC he was devastated and the night before my surgery - I am a lumpectomy he fell apart. He was so scared as was I. I tried, along with my husband, to allay his fears but all they hear is the C word. I remember how frightened I was when my mother was DX many years ago and I was much older than my son is - he is 22. I think BC is a crapshoot and like everyone else we all know women who have lived for + years with Stage 2 and 3 BC and sadly others who died with an earlier stage. You just dont know for sure despite all the stats that say if you have this kind......they dont know either. All we can do is do everything we can to prevent a recurrence and frankly it is in God's hands. I am a worrier so I have to work at it every day to distract my thoughts elsewhere and try not to go into panic mode when I have to have a mammogram. I have had 2 since my DX; so far, so good. I have Stage 2, Grade 1 IDC and on Arimidex. I had a lumpectomy and 33 rads treatments. I have to admit I never considered not going the treatment route of rads or chemo...not for a second. I was too afraid not to. My son has a friend whose mother's bc has spread to her colon. Obviously not a good thing and he is very upset for his friend. Doctors are throwing everything at her. I know you guys dont know her or me for that matter but please pray for her and her son. He is such a nice young man and his heart is breaking.

  • Ljcan
    Ljcan Member Posts: 17
    edited July 2012

    My sisters thought that I needed support so they not only posted on fb but started calling some of my close friends and telling them. I started getting calls from those who should only hear it from me. It was very upsetting and there was a lot of misinformation out there. I decided that I would have to speak for myself so I started a blog and posted the link on face book. Now if someone wants me to tell them my whole story I give them a card-like a business card with my blog address on it and tell them to go there. I don't like to tell it over and over again. My friends and family like it because they don't feel like they have to bug me, but if I had it my way I would have keep it to myself. It's other people that limit me! I hate that. I'm sorry you had this experience but I have learned that sometimes well meaning people do unintentualy the wrong things and that sometimes we have to let them do things we can do for ourselves because they need to feel like they are doing something. Even if there is nothing they can realy do. But most important to me is my loved ones so I forgive and forget because I need to be with them.

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