OK, trying to stay calm, need info, and advice....

KellyA · 03-22-2007, 02:02 PM

I feel absolutely horrible for Elizabeth Edwards. I wish that I had not read about the kind of relapse she is having. I am physically sick to my stomach right now and don't know what to do. Tried to call my doc and he is out for the day.

As some of you may remember, back in Jan , I had a bone scan done and a single spot showed up on my ribcage (The baseline bone scan was clear in May). Both the x-ray and CT scans were clean. I had a repeat scan done about a week ago and the sme spot still showed up, no change at all, no new areas. Doctor feels like its nothing. CA 27-29 was 20.3 in Jan and 24 in March. My onc says that they do not usually biopsy ribs- that it is very invasive and not easy. Now I have read about Mrs. Edwards- she also had an area on her rib, but did have it biopsied and it was cancer.

HELP!!!

1. what tests should I /can I ask for? (what test would provide more info)
2. is it possible to have a spot stay on a scan and it not be cancer? Should it always diappear if it's not cancer?
3. how common does mets present in a single area?

I just don't know what to ask for..... HELP!!!!!

Love, Kelly

Becky · 03-22-2007, 02:25 PM

Kelly

Calm down. For the record, Elizabeth Edwards also has several suspious spots in her lungs that were too small to clearly identify in the test she had. Secondly, she had a large tumor that needed to be treated with chemo before she could have surgery. Also, although it was one spot on her rib and was deemed "small" it was troublesome enough that her rib cracked (which is how it was found in the first place).

You could ask for a PET/CT scan. I know you are scared. I am still at work (I usually start early so this is late for me) because it was harder to focus after the Edwards news. She made her initial cancer announcement when I was about ready to get my 3rd AC treatment - I am only about 3 months farther along than she is so it hits home for sure.

Talk to your onc to see what he/she recommends to find out what is on that rib so you can get this off your plate. I think everything will be fine but its hard not to worry when things weren't fine for the Edwards today.

Erin · 03-22-2007, 03:24 PM

I am surprized by how much Elizabeth Edwards recurrance has affected me. I can't think about anything else, and suddenly feel very insecure and "at-risk". I am only just past my second round of TCH and I know my odds of long term survival are great, but still, this really hit me emotionally. I have been in battle mode since my dx in January, and maybe is just a bad time, but still I was surprized by how much it affected me.

lexigirl · 03-22-2007, 03:28 PM

Kelly,

This news has it us all hard. I think I would trust your onc on this one. Maybe you could request another scan in a few mos? I know that I am fearful of recurrence, too. I even wonder if Elizabeth is her2+, as it sounds like she will be on continuous tx from now on.

HUgs,
Lexi

Mary Jo · 03-22-2007, 06:31 PM

Ya, it's been a tough day for all of us "sisters" no doubt. It hit me really hard too. I even cried a bit (tears welled up in my eyes) - as I said in an earlier post we all see how vulnerable we are and it is scary. Kelly, I'm sorry this has upset you so much. I really am. You need to get to the bottom of your "rib" issue so you can put it to bed for good. I will pray that all is well - I promise I will.

I pray for all of us this night and for Elizabeth Edwards and her family too. That we can all sleep in Peace and try to give it all over the One who cares for each of us.

Hugs to you,

Mary Jo

michele u · 03-22-2007, 08:39 PM

Kelly,

Everytime I hear of someone recurring, I get a sick feeling also. Kelly, have you asked about a PET scan? If it is not growing it's probably nothing. Chances are it is nothing. Yes, things show up alot that turn out to be nothing. On one of my pet scans my thyroid lit up. It turned out to be nothing. Test's are not always correct. There are false pos and false neg.

MGordon · 03-22-2007, 08:56 PM

Need advise? Here's my $.02:

Step 1: Deep cleansing breathes - remember fear and stress are killers! You deal with enough, do not take on more!

Step 2: Remember the love and faith you have in YOUR healing team - they KNOW you and your disease! Please try NOT to read too much into others diagnosis!

Step 3: Pray for Mrs. Edwards and her family - they need your support. I have millions of reasons to love Lisa, but foremost in my memory is that whenever she felt the worst she reached out to others the most.

Step 4: Seek physical support from a loved one - if a hubby - ask to snuggle! If another family member - they should WANT to hold you why you have a good release!

Step 5: Please do not misunderstand this one, but be thankful! Things COULD be worse. Remember the small victories and feeling of triumph in your life (both now and before diagnosis) and the MAJOR victories too! Somebody is watching over you and LOVES you! Tell them thanks on a spiritual level.

Step 6: Keep us posted - because we love to hear from you too!

Here - Ready - CYBER HUG!!!!

Love and Light
Mel

PS - LISTEN to Becky - she is one of the most insightful and knowledgable people on earth, much less this website!

lu ann · 03-22-2007, 10:16 PM

I know it is difficult not to compare our prognosis with another whose situation was similar to our own. Some of the girls, (Linda from Canada, Lynn from Australia, and Lisa from Colorado), who were diagnosed about the same time as me, have lost their lives to this disease. It makes me wonder at times if I'm next. I just keep telling myself that someone has to be in the survivor percentage, so why can't it be me? It is hard to keep positive, but it is doable. Lisa's husband Mel has some very good advice. Try using it before your mind puts you in the funk. It's like taking pain medicine. It works better if used before the pain is at it's worst. Take care and God Bless. Lu Ann

Chelee · 03-22-2007, 11:32 PM

I've had some new rib pain on the right side for about 3 weeks thats bothered me. I tried to convince myself that due to the seroma I have on that side it has built up pressure and is causing the pain I feel? I had this mastectomy from last week scheduled, and now my ooph coming up so no time in-between to get scanned. (Thats if I could even get one my my so called doctors to order one for me.) So I have just been trying to relax and think positive that its not anything to worry about. I have a full plate now. But it sure didn't help hearing the news of Mrs. Edwards today.

I agree with Becky on this one Kelly...talk to your oncologist about this. Let him/her know that you just won't be comfortable till you get some kind of definite answer. He should understand. Alot of good advice here that I will take myself.

Wishing you all the best.

Chelee

G. Ann · 03-23-2007, 12:52 AM

It would seem like it's good news that the "spot" seen on your bone scans has not changed from Jan to last week, plus not evident last May. Sometimes a public figure generates further investigation for other BC survivors who are not in the limelight. The high profile might help your oncologist listen more carefully to your concerns and order additional tests. Sending prayers and good thoughts your way.

KellyA · 03-23-2007, 03:54 AM

Thank you. I don't know what happened yesterday. This thing has been in the back of my mind now and doesn't seem to go away. I thought that I had reached a certain level of comfort with it, but apparently not. I am going to have to pursue some kind of testing to get a more definitive answer so I can put this to rest.

Oh I just feel horrible for the Edwards. It was crushing news. I just love Elisabeth Edwards- she is a beautiful woman who is so strong and has been through so much. Sometimes it seems so unfair when people have so much to deal with. She is really so inspirational and someone very special. I want everything to be ok for her.

Since cancer something very different has happened to me. I don't know if I'll be able to put it into words or not. I would say that I was a relatively sensitive person before and would be upset for others and try to feel their pain and put myself in their shoes- as much as I could anyways, without being there myself. But to some degree I also realize, and am ashamed to say that there probably was a degree of insensitivityand that things usually never "really hit home". I feel so much deeper now. I ache inside for others.Really ache. I love people that I have never met before and am profoundly affected by adverse things in other peoples lives. I just want to fix everything and make it go away. I feel like when something horrible is happening to someone else, its happening to me and that I can actually really feel like how they might feel. As bad as I feel and as upset as I get when situations arise, I am THANKFUL to the Lord for this blessing. I feel like my eyes have been opened, and my soul is alive. Really alive, for the first time in my life. As hard as it is, it is also a beautiful feeling, one that I probably never would have had without this disease. It is amazing how something so beautiful can come out of something so bad. God is good.

Love, Kelly

Mary Anne in TX · 03-23-2007, 04:47 AM

Amen, Kelly! I've had some of those same revelations in my life!

I think it hit me hard because it put a face on what we live daily. Elizabeth Edwards gives us the opportunity to see "us" in the daylight! And for others to see us too.
Kelly, best wishes on that "nasty ol' spot" that worries you! I'm hoping that it will reveal itself to be just a "little nothing"!
Here's hoping that you have a really great day today! In fact, I hope this can be a super great day for all of us!
Thanks so much for being real!!!
ma

Lolly · 03-23-2007, 10:33 AM

Kelly, you've put into words so beautifully what I feel since BC. One of the reasons I decided to stop working, in addition to feeling that I would be able to maintain my health much longer, was so I could help take better care of our ageing parents.

I just ached inside to think that they wouldn't have enough care and companionship, so I spend as much time as possible with my dad and mother-in-law. My mom passed on last year, and my one consolation is that I was there for her in her last years.

I think before cancer I made a lot of excuses for not being more "hands on". Cancer has been a blessing for me, I don't wait to express myself or help someone if I can.

<3 Lolly

RobinP · 03-23-2007, 11:34 AM

Kelly, I know that you're going to get this rib issue checked out again to give you peace of mind. I just feel in my heart that you're going to be fine.

Yes, Kelly, breast cancer is a great equalizer and brings us all on this level of understanding that would probably never been possible otherwise and solidifies us in a special way.

PS. I too find the news of Mrs. Edwards disturbing and if I let it, it could rattle me. However, I just tell myself that life is a crap shot--nobody knows how much time they have here and anyone could die at any moment, of God knows what.

rinaina · 03-23-2007, 04:08 PM

Kelly, I can relate to all you have beautifully stated. We have to remain positive as we all know what a difference it can make. I truly bellieve we have to keep our spirits as high as we can and be as pro-active as we can. It sounds to me like Elizabeth Edwards might have not been very pro active when it came to breast health in her years prior to diagnosis. Every case has it's differences so we can't compare. I know people who were originally diagnosed Stage 1 and aren't here anymore and I know people who were staged at 3 and 4 and are doing fantastic. We just have to keep fighting with all that we have. I too was very saddened to hear the news about Elizabeth Edwards but I am always saddened to hear any news at all about anyone with breast cancer. This is a normal reaction but we have to keep things in perspective and we can't let it get the best of us.

Sheila · 03-23-2007, 04:57 PM

Kelly

It was a wake up call for me when I heard the news too...if you remember, I suffered pain in my ribcage about 2 years ago, right when my son was getting married...I had sneezed and felt pain....I had an xray...nothing, but it was a chest xray...the pain continued and I had a bone scan which revealed a hot spot on the rib exactly where it was hurting....so I had a rib xray...it was indeed a fractured rib. I have had 2 bone scans since then and everything has been normal....just trying to put your mind at ease that it could be nothing...but for peace of mind, get more testing done.

SandyBB · 03-26-2007, 10:26 AM

Kelly, I actually logged back on to this site today after a long absence because I wanted to see what everyone was saying about Elizabeth Edwards. That's when I saw your private message to me regarding my posting last fall about a spot on my rib. So sorry I did not reply sooner.
As background/reminder, I was diagnosed stage 2B in Sept. 2003 with no evidence of mets. Then in Aug of 2006, I experienced severe pain in my left rib area(cancer was in my left breast) with no memory of any injury. All my bone scans in the past had been totally clear. This time they did an x-ray - nothing, then a bone scan which found a big hot spot on the rib which we assumed was bone mets. But, my blood work and cat scan were fine, and my onc swore that bone mets rarely showed up in only one spot. So - I waited 6 weeks, had another bone scan. Still there (but maybe, a tiny bit less bright). But no other spots. So then had a Pet Scan - totally clear. My onc said she was 97% sure it was not cancer. Wait 3 months, have another bone scan - spot much much smaller, no new spots-
diagnosis - broken rib from weakening caused by radiation. X-rays do not always pick up a rib fracture. I could have had a rib biopsy but very invasive. If this last bone scan had not been so conclusive, I might have needed one for peace of mind.

Also - please note that Elizabeth actually HAD a broken rib, not mets to the rib. The mets is in her hip and one other spot, I think.
And Kelly, I will send you a private note so you can reach me directly if need be.
Take care,
Sandy