Robyn66

Hi guys,

I am scheduled for a CT and bone scan on Wednesday and my onc said she was doing it because it is routine.  Made light of it.  No big deal.  I had tumor in my sentinel node but the other 9 they took out were clear.

I have of course been obsessing about this non stop ever since.  Like what if they find something?  I know- better to find out now.  BUT if they find something its BAD like stage 4 bad.  Like I definately won't live to see my kids grow up bad.  My husband is saying I am over reacting and really being a little nuts right now.  But all of these ups and downs and unexpected things like the lymph node being found have worn on me to the point of insanity!

Can anyone talk me down on this one???

Thanks guys!!!

Love ya all!!

Robyn

First sweetie take a breath,  I had surgery Oct 27th and my sentinel node came out positive but the other nine were clear so try not to panic yet.  I know that is easier said than done because I am still doing my fair share of panicking too because I still have to have a ct and bone scan.  These are routine, but after having the nasty surprise of a positive node anything can make you very nervouse.  You may have to have these tests too but remember they are routine.

I had a mastectomy on my right side and the back side of my arm is numb too.  I don't know if its from the node surgery but it very well may be.  I had three drains and had one taken out this week. 

Just follow your doc's orders and let your boyfriend take care of you and you will be fine.  You sound like you are doing everything you are supposed to be doing. 

Its ok to be scared and its ok to have bad days.  When I got the news about the affected sentinel node I asked my husband to repeat exactly what the bs said and then  I spoke to the bs, ask her to repeat it if necessary.  Its tough to process everything at once, especially if you were expecting a simple outcome. 

I am right there with you!!!!

Take care!!!!

Robyn

Its so funny you said that because I said the same thing.  They asked me how I was and I said "great"  It actually was the first day since surgery I had energy even though I was (and am) still in pain but they looked at me like I was insane!!!  Then they handed me all kinds of forms to fill out and I looked at my husband and said no more forms because I have already filled them out at the Breast Center, the Surgeon, the Plastic Surgeon and at the Pre-op.  I have a print out of my meds I just hand them (which I didn't have with me) but fortunately Dr. Ligibel logged on to the computer and it was all there.  I think they thought I was walking in off the street because they asked me for films too!!!  That REALLY annoyed me,  I figured on my paperwork somewhere it should have said I was in part two after a mastectomy!

I am with you, we take a two hour drive or train ride to get in to Boston and there is no way I will change.  You cannot imagine how the hospital that originaly diagnosed me messed up tests that had to be re-done up here in NH.  There should be a warning at the hospital saying DON"T BE TREATED HERE FOR CANCER!  and I have heard that nurses at that hospital actually tell people to go to Boston and NOT be treated there!  There was no question of Boston for me.  They were wonderful to my mom and gave her 18 months she wouldn't have had ordinarily. 

But I am going to ask if Dr. Ligibel can see me in the Breast Center at BWH.  The worst that can happen is she will say no.  But I know she is one of the best so I will see her where I need to see her.

I honestly don't want to be the drama queen of the group but I have been going through this since late July (when base line mamogram was done) and have been riding the roller coaster ever since!

As you know I had the mastectomy Oct 27, and the surgeon was surprised to find the sentinel node affected.  So he took them all out for testing.  This was beleived to be early and realitively no big deal cancer initially.  So that freaked me out. 

The good news is that it turns out that only one node was affected and the rest were clear.  I met with Dr. Jennifer Ligibel at Dana Farber on Wednesday. 

She is not sure about the HER2 status of the original Biopsy done up in Peterborough where the original diagnosis was done, so I should hear about that today.  That may be good news but even if it isn't, with herceptin I will still have an 85% chance of being ok forever after this mess is over.  Because of the lymphnode, I am stage 2 which isn't bad.  There were also three small tumors found instead of just the one they thought was there.

I of course have to have a ct scan and a bone scan because its routine.

But here is what has me freaked me out.

I had been blowing off having mamograms for years.  In fact I almost blew off having this one.  I don't know what made me go get this one but thank God I did, because it was probably my last chance to get this before it would have been all through my lymphnodes at least.  I am scared of these last tests even though Dr. Ligibel said they were routine and no big deal and was clear that she didn't think there would be anything there but my surgeon who I know is one of the best in the world was pretty sure my lymphnodes wouldn't be involved and he wasn't right so who knows if there is another nasty surprise in store for me?

When we were in the waiting room at Dana Farber, there was a woman there very upset who has 6 stage 4 cancers and was complaing about everything.  I felt really bad for her but she was going on and on for 20 minutes and I thought I was going to start screaming!  After my appointment she ended up coming out at the same time and was still complaining.  Not that she didn't have every right and reason to complain but this was just too much for me to deal with.  We almost ended up on the same elevator with her but my husband and I managed to walk around the floor to avoid it.

The atmosphere is so different from Brigham and WOmans.  Not that they aren't all lovely people.  They are very nice.  My mother went there when she had lung cancer.  SHe died 13 years ago so that was another problem because even though they renovated it since then it was still looked enough like the same hospital to bring all that back too. 

On the drive home my husband nailed it.  He said Brigham and Women's felt like a hospital and Dana Farber felt like a morgue and it just did.  I don't know how I am going to force myself to keep going back there.  I am going to because its the best place to go but ever since I have been there I have been having nightmares about dying.  And I am also at the end of my rope about waiting for test results.  I am just so tired of waiting to hear catestrophic news.  Top that all with the pain of my dressings and drains  and money stresses too. 

I just feel like this is a horrific nightmare I wish I could wake up from!

Robyn

My husband did a casting with me and we  used all of the casting tape they sent it is most definately a 2 person job and we feel very  happy about the result.  We probably have a 4 layer thick cast.  As you are doing it.  You need to keep your hands on top of your head to make the girls stand up a bit and besure to use LOTS of vaseline on your skin.  Its very messy and not possible to do alone if you used the same kid I did from breastimpressions.org  But it is worth the effort!  I am very glad I did it.

God bless

Thank  you so much Dani, Westie, Ailenroc and everyone for your fantastic support.  You have all made me feel much stronger and less of a victim in this whole thing!

I had my pre-op appointments yesterday and it was a tough one.  Very grueling and everything was explained to me which is hard because it really hits home. 

The thing I am looking forward to most is that this time next week I will be home.  They are expecting I will spend only one night in the hospital, so I should be home by Tuesday night and should be waking up in my own bed Wednesday morning.  I am making a casting of my breasts before surgery.  This very cool company called Breast Impressions http://www.breastimpressions.com/ who sent me a kit for free. 

Little by little I am accepting this and after the PS is done I will look really good.  My last real worry is the sentinel node biopsy.  IF that comes out clean I should be ok.  I think I have a good chance for that because I had a fine needle aspiration of a lymphnode and it came out clean.  So I am hoping the odds are in my favor.  If that worry goes away I can take just about anything because that will mean if I need chemo, I may qualify for the "easy" chemo in a trial that is being done at Dana Farber. 

All of you wonderful ladies have given me a lot of hope to hang on to. I can't express how grateful I am to have it and how valuable you all are to me!

Love to all!!!!

Robyn

I would love to not have chemo but I have no idea.  I went from the local hospital in NH to BWH in Boston so I have had only one pathology report done and it shows I am her2+.  Nothing in the lymphnodes that they have seen.  They did a fine needle aspiration of one close to the tumor and it was clear.  My surgeon seems to think I am going to be ok because he is allowing reconstruction at my mastectomy.  My Oncologist says that if it proves I have no lymph involvement I may qualify for a trial that includes a lighter chemo but she didn't want to even get into any of that until after surgery.  So I am in a wierd place.  I know what's going on but not totaly.

BTW, I am with you on not borrowing trouble by looking around too much.  If you don't know what you are reading about there are a lot of places here that are very scary.  I have freaked myself out quite a few times!  So I try to stay away from the chemo things because I have no idea what I am going to deal with.  I have wondered if nothing is in my lymphnodes and they get it all with the mastectomy why I would need chemo too.

My personal feeling is that it would be easier if I FELT sick or something.  It just seems so UN-REAL to FEEL great and energetic and healthy and be going in to the hospital to do something that will make me feel horrible and don't even get me started about the abject terror I have about chemo! 

Next week is going to be a busy week I guess!  It's ok to cry and be upset and angry.  A lot of the people who have been around me have seen me being SO positive most of the time through this that THEY get upset when I have a bad day.  My husband and friends will just hover over me and badger me about how you HAVE to have a positive attitude, like ANYONE can be positive 100% of the time even without BC! 

I finally told them that it would be worse for me if I had to hide my bad times from them for their sake.  And that made sense to them.  Once thing I have learned from this experience is not to allow other people's drama intrude into my life and to allow others to intervene on my behalf if I need them to. 

In a weird way it has made me a better friend and sister because instead of letting people wallow in their own problems like I always let them, I am telling them that they need to get their stuff together because I can't have that kind of negativity around me.  I can give honest opinions now when I was afraid of saying things in the past.  I am never mean or hurt people's feelings but I am more direct and the people in my life have responded surprisingly well.

I made it clear to everyone around me from the beginning that I wasn't to be talked to like a sick person and until this past weekend I hadn't been confronted with it.  A very well meaning relative came up to me and asked me how I was feeling in that concerned sad way that you do when someone is very very sick.  I just said I am "fine" and grabbed my husband and explained to him that I needed that person to be kept away from me because I didn't want to offend them because they made me so incredibly angry speaking to me that way I was going to scream.  I do not fault them at all.  I absolutely love this person but his inability to cope with what is going on with me impacted me drastically.

Like one of my best friends on earth who I love like a sister and suggested I read "The Last Lecture" She meant it in the best possible way but just the mention of it gave me nightmares for days!

I have explained that my attitude is like a glass Christmas tree ornament and people's words are like a sledgehammer and you have to really be careful of what you say because the wrong thing can destroy me for days. 

I have always been the one who was there for everyone and now I am asking people to be there for me in a way that I need.

I am terrified about next week; I don't know how I am going to be when I wake up.  I know I HATE hospitals and I will want to get the hell out of there as soon as possible.  I hate being touched by strangers and as wonderful and kind as every doctor I have come into contact with has been; there is a level of violation I feel that is not their fault.  And I keep having nightmares of waking up in the middle of surgery and seeing my breast in a tray. 

But all the horror movie imagery aside I have to get through this because I have two daughters ages 13 and 9 and a husband I adore!  And I will use whatever I have to, to get through this and put it behind me. 

Hi all,

I got my date for surgery October 27. My Halloween will officialy be RUINED!!!  But just for this year!   I am having a mastectomy.  My surgeon is letting me have reconstruction at the same time because my fine needle aspiration of the lymphnodes came out clear and he thinks things should all be ok.

I am going for my first consult with the plastic surgeon today.  I have no idea what kind of reconstruction I want to have because I am losing only one breast.  So I am hoping all of the rest of my questions will be answered today.  I am hoping I am not in the hospital too long. 

I am really having some anxiety today.  I have anxiety about strangers and crowds and there have been so many strangers who have had intimate access to my body.  They have all been very nice and I have absolutely no complaints.  I am going to Brigham and Women's Hospital in Boston.  But before I go I always get nervous for obvious reasons.  But now its even worse because the list of new people looking at me and touching me is a mile long.  Now there is Nuclear Medicine, Anesthesiologist, Plastic Surgeon, Breast Surgeon, Oncologist,  and about 8 billion assorted nurses and other oncologists.  I know there is no option but to deal with it but ther are times I want to just run away!  I know that is stupid. 

I have been really doing well 99 percent of the time.  I have been joking around and feelining realy good about things especially because my lymph nodes seem clear and that is such a huge good thing.  But after I heard about my surgery date I was on the phone with my best friend and she asked me if I was ok becaus it must all be hitting home and I told her I was afraid I was going to burst into tears today because it IS hitting home.  In spite of the worry and the stress of waiting since this whole thing started at the end of July I have looked and felt normal.  Now I am going to have part of my body cut off and even though its going to be repaired its not the same.  Its not ever going to be the same.  After I got off the phone my husband was MAD at me and told me that I had to STOP FREAKING OUT OVER THIS.  We had a huge fight right there and I think it was nerves on both our parts.  He is just as scared as I am and he just tends to bottle things up and it comes out as anger at me when he is really worried.  We have been together since we were 18 and we are 42 now.  Our 17th wedding anniversary is coming up on October 12th.  Anyway we made up right away. 

I am also scared about the thought of chemo.  And then I thought of something.  Since this cancer isn't in my lymphnodes and will be removed with my breast does anyone thing they may say I don't have to have chemo?  I know I have that HER2+ thing.  AND I had ovarian failure so I have gone through menopause.

Anyway I am having a tough day

Love to all

Robyn