Calling all TNs

laurajane - just a drop in to say I'm thinking of you.  The ladies here have given you some wonderful advice and they are right...no doctor can put a time limit on things. 

(((Laurajane))) I have no words - these wonderful ladies have said it all. Just know we are in your corner.

I'm home from my bilateral, very sore, but preliminary results indicate NO lymph node involvement.  They took 3 out, and they say the preliminary results are about 95% correct.

Laurajane:  I woke up from surgery praying for you.. as odd as it sounds, you were on my mind immediately.  You've been in my prayers constantly.  Please don't give up.  Have you tried calling the Cancer Treatment Centers of America?  Your surgery is Tuesday, right?  I will continue praying for you.

Question - I had a CT Scan before I had surgery and of course the mamogram when I found the lump.  When do we normally have the next CT Scan.  I would think since we are TN and our BC is aggressive we would have another CT scan between chemo and radiation?  When has anyone else had a second CT scan or do they not do one unless they feel a lump or some other sign of a problem.  Curious as to what is next and how they are going to keep an eye on this "aggressive" cancer.  Can anyone tell me what their experience has been? 

LJ - You are in my thoughts.

Laurajane: so sorry and angry to hear what those doctors have told you!! My mom was told 3months and lives 20+ yrs!! Don't believe or give in to time length of what doctors say! I think sometimes it is mind over matter and you need to FIGHT!!! I agree gets more tests done before you decide anything! You are young and need to fight this with everything and miracles can happen! ((((HUGS))) Your daughter sounds like the best!

So I have noticed that almost everyone has the diagnosis of IDC - I have DCIS? What is the difference? I know I should know but my chemo brain is getting the better of me! Plus I was reading an article in HEALTH and there is a doctor who is fighting for the 50+ rule of getting mammos and she said in this article that those of us with DCIS shouldn't be considered having cancer! WTF?! Then why did I have a bi-lateral mas. and 6 months of chemo?!! Too confused right now?

Laurajane:  I am so sorry to hear what the doc said, but am of the same mind as others who have already posted.   I realize one day at a time can be difficult considering the shock they've given you, but they truly can't put a timeline on your life.  They are dealing with statistics.  Scary ones, but still, they're stats.  Sending love and concern your way.

kad22- DCIS is Ductal Carcinoma in situ- it means the cancer does not have an invasive component (InvasiveDC), though some become invasive (science does not yet know which may become invasive and which will not).

The prognosis is usually much better for in situ, though it can progress. Some in the medical field feel it is more of a "pre" cancer than cancer itself. You probably had a bi-lateral because the DCIS was spread throughout your breasts, so it was safer to remove them than to risk missing a progression to IDC.

This is a really simplistic answer; it's late and I've had a long day but I figured I'd chime in since I was working online for my Naturalist course. 

Hi all thank-you for all of your wonderful thoughts and prayers.

My Doc called me this evening and said he talked to everyone he could think of calling including the BCRC. The pain I am experiencing will only get worse if I don't have the surgery. He said that it is highly possible that in only a few weeks it could become unbearable. So I will have the surgery on Tuesday and wait until I come to the next road. The oncs at the BCRC said that because of my immediate resistance to Taxol that they did not have a guarantee on any kind of chemo available to me at this time. Cisplatinin would give me a remission but they could not say if it would be for a week , month or more. The quote was "A year or more would be challenging". I am so happy for all of you that had complete recovery from Taxol. As we all are I am praying for a cure for those of us that don't. 

The best thing that happened to me tonight was that when I was in the restroom earlier I had a sudden profound thought and that was how can I feel this good right this minute physically and have such a short prognosis. I am going to love every minute I have feeling this good or at least try. 

laurajane,

Your personal doctor got back to you before the weekend.   What a doctor.   I hope you've a restful weekend.

LJ, everytime I hear disturbing news here, I feel like I am hearing it about my sister.  You are no exception.  For the past 24 hours I have wondered what my choices would be, and what I would be feeling.  You have every right to feel crazy, and I can so relate to you feeling that sleep is wasting time.  BUT rest will also keep you in a better frame of mind.

I only had a partial Mx, and really have no advice other than some I heard here.  One of our sisters said it was nice to have one of those big wedge pillows to sleep somewhat upright at the beginning, because raising herself from flat off the bed was less than comfortable.  Take your daughter with you to any more appointments, and have her take notes as to what care you will require.  It is so difficult to remember things when you are getting such news, and deciphering an accent makes is all the more tough.

I willl be keeping you in my prayers.

{{{{{{Laurajane}}}}}

Meece

Oh Laurajane I have a MX in Sept of 09 so any specific question just PM me if you would like.

 Question to all of you.... My friend 's sister in law found a lump in her breast.... Went out and purchased health insurance. Few days later went to the doctor for a physical ,then biopsy all that good stuff. She needs chemo. She received a letter yesterday that the insurance is cancelling her due to pre existing condition. My question is: she still needs the treatment. Is there any programs that any of you know about that can help her get the treatments? Please let me know.

Have a good weekend everyone. 

Monika

laurajane, as many have said more eloquently here, you have a legion of women out here in your corner and throwing out positive thoughts and prayers on your behalf.  I remember when I was diagnosed, I didn't sleep for weeks it seemed - I thought I'd be depressed and want to sleep but instead, it was the opposite and I didn't want to waste time sleeping.  I hear having a really great recliner/rocker chair is very helpful to have after MX.  I just have to wonder whether after surgery why they can't try carbo or other regime; my onc just put me on it, there was no trial... Have they said what the plan is after surgery?  

Wishing everyone a SE free weekend. I myself am dealing with fire-armpit-from-hell (one more rad; then 6 boosts) but I am fine with it, as long as it's terrorizing any potential rogue cells... Sugar, love your do!! 

LJ - know that we'll all be waiting in that waiting room with your daughter.......holding her hand as well as yours.  I had a bilat mx and it really wasn't as bad as I thought and the drains weren't too bad, more of a huge annoyance.  I showered from day one, using a big safety pin, pinning the drains to a 1-1 1/2 inch ribbon tied around my neck.  I wore loose clothing and used a large body pillow to keep me from accidentally rolling over in my sleep.  (((hugs))). 

Monika - a friend at work has a relative that is facing a cancer recurrance and is uninsured because her husband had been laid off and they hadn't been able to get insurance.  They were very concerned and worried because they do have retirement accounts, savings and various properties, but didn't want to drain their resources right away.  It turns out that the same place I was treated does have a grant program and they will be eligible, the social worker is also putting them in touch with other programs for medication as well.  Have your friend talk to the social worker at the hospital, they are connected to the many programs offered.  If the social worker doesn't know, talk to the onc or his nurse - they can help.