Devestated

Cathy1 · 02-26-2007, 01:30 PM

I am so devestated, I can barely type. My scans in November were all good and a petscan I took last week has me in shock. I knew there was something going on under my arm because of the pain, but didn't expect what else it found.
There is focal, markedly increased fdg uptake within the left axilla, corresponding to stranding soft tissue density surrounding multiple surgical clips in this region. The maximum suv has increased from 5.0 to 10.9. There are also numerous focal areas of moderately increase fdg uptake associated with the anterolateral mid left chest wall musculature. Maximum suvs range up to 2.9.
-multiple bilateral lung nodules are identified on the ct portion of the exam.; a small lateral right upper lobe nodule appears to have increase in size from the previous exam.
-a new tiny anterior left upper lobe nodule- maximum suv is 0.6
-new superior left lower lobe nodule adjacent to the major fissure-suv of 1.0
-small nodule located within the posterolateral aspect of the left lower lobe has increased from 1.5 to 2.0.
-new hypermetabolic subcarinal lymphadenopathy- max. suv is 5.3
-focal, abnormally increased fdg uptake along the medial aspect of the right iliac bone has increased in intensity from the previous exam, from a mas. suv of 4.1 to 6.9 (they told me it was arthritis in December)
-evidence of new left adrenal metastatic disease.

I have been off of xeloda and herceptin since last summer because my scans were good. The onc wants to start me on herceptin every three weeks and femara and zometa. I asked if he could take out whatever is under my arm because it hurts and he said that once you have it in multiple areas, they don't do surgery.I got the impression that why do surgery in one area, when another area will just get you.
He said something about quality of life and not putting me on chemo now because then my body might not be able to handle it later.So he will check again in two months and see if I need to go on chemo or not.
I just talked to my brother and he thinks I should get a biopsy of the area under my arm in hopes that they would know better what kind of chemo to put me on. I don't want to wait around not being on chemo if I could be fighting back with it now. Also, my other onc. who just retired always said, "You never give this stuff an even chance."
My left breast mastectomy was nine years ago and I had a recurrence by collar bone, under arm and between lungs three years ago. Herceptin and xeloda got rid of that.
Does anyone have any thoughts or ideas about what I should do. I am still in shock and can't stop crying. God Bless and Keep you All, Cathy

Sheila · 02-26-2007, 01:36 PM

Cathy

I am so sorry that you got this news....take a deep breath and plan on beginning the fight again. I can't understand them waiting to see...esp. with multiple areas of concern. If you already had 1 recurrence that Xeloda and Herceptin took care of, why did they take you off Herceptin? Just wondering as when I recurred, they told me I would be on it indefinately...like forever or until it quits working.

A second opinion sounds like it is in order...so you at least have another opinion on how to attack this.
Sending you a big hug at this time/// look to brighter days ahead and know it is worth the fight!

tricia keegan · 02-26-2007, 02:44 PM

Cathy I'm very sorry to hear this news but like Sheila I too would want a second opinion and don't see the point of waiting.
Remember you've beaten this before and will do so again,you're in shock right now as we all would be but come up fighting asap and please keep us posted!
Tricia

Joy · 02-26-2007, 02:55 PM

I can hear the panic and fear you are feeling (takes one to know one kind of thing). So feel it, cry about and then regroup and remember how STRONG you really are and how strong you will continue to be. A second opinion is ALWAYS a great thing because you either affirm the plan you are on or facing or you find a new one that works great so it is win-win. So don't hesitate on that. We are hear for you and it is good that you posted so we can all be thinking of you in powerful ways.

Barbara H. · 02-26-2007, 03:42 PM

Hi Cathy,
I can certainly understand how upset you are. Three years ago I had it through out in lymph nodes, brain, lungs, liver. After brain surgery Herceptin as a single agent took care of it, and I was NED until last March. Now I am dealing with it in the bones. I would also get a second opinion. I also do not understand why you were taken off Herceptin. Nevertheless, you might want to see what Herceptin, Femera, and Zometa will do on their own. Right now is hard and you will have your ups and downs.
Nevertheless, I still continue to teach third grade full time. You can still have a life and "quality" is important.
Best wishes,
Barbara Holz

tousled1 · 02-26-2007, 03:43 PM

Cathy,

I'm so sorry to hear your news. They can do a needle biopsy under your arm. I had one done when I was diagnosed because of pain in my underarm. Why would the onc want to wait to put you on chemo? I think a second opinion wouldn't hurt. Hang in there, you can beat this!

Adriana Mangus · 02-26-2007, 05:14 PM

So sorry to hear you're devastated, please do not give up; there are people with multiple mets living, and living large, no kidding, I have a neighbor who was diagnosed about 4 years ago with liver, lung and bone and she's doing so well.;she just got back from a cruise to the Orient. My prayers are with you Cathy. Hang in there.

I just had a bone density test and like you was told that I had developed arthritis on all of my joints, uh? I wonder if I should get a second opinion?
The pain has gone away little by little and feel better than 2-3 months ago but..I wonder just by reading your post..

Anybody? I appreciate any suggestions/ideas. Thanks.

MJo · 02-26-2007, 06:02 PM

I am sorry about this diagnosis. I like what your retiring onc says about "not giving this stuff an even chance." Maybe you need a second opinion and a new second oncologist. If herceptin got rid of your cancer before, I''m betting it will again. I've enjoyed reading your posts, and look forward to hearing about how you are doing. Love & Hugs...

Mary Jo · 02-26-2007, 06:32 PM

Hi Cathy,

I am so sorry for your news. I can hear your fear and sadness. All of us here understand your fear and sadness. BUT you can fight this fight. Many do and so will you.

When you were originally diagnosed were you diagnosed with mets also? Did you have a PET/CT scan at the beginning of your journey to determine that?

Definitely you need to get a 2nd opinion. God Bless you!

Mary Jo

Leslie's sister · 02-26-2007, 08:02 PM

Cathy:

I read your post and feel so sad for you. I KNOW, crying next to my sister, how devastating bad news is. She couldn't stop crying either. I would cry with her. Finally, I had to get it together and take charge. Do you have someone close to you that can go with you to appointments and ask the right questions? You sound very, very knowledgeable in your posts but the shock and sorrow that you are going through now will hinder your thought process. If you have someone, have them go with you, if not make a list of all your questions. It is easy for even the most informed person to have a mind flush when in front of a doctor. I don't have any words regarding next step to offer up other than to say, DEFINITELY a second opinion is in order. You do not want to hesitate with this beast. I do want to let you know that I have read some of your prior posts and you have acknowledged the power of prayer. Cathy, I am praying big time for you- That you get the right advice, the right treatment, and you knock this rotten disease back on its behind!

Andi · 02-26-2007, 08:31 PM

I am so sorry to hear of your recurrence. I received my news of the beast rearing its head again right before Christmas. It's like going through the diagnosis all over again.. in some ways it was easier because I had a pretty easy time with the treatments I had taken before, on the other hand it is much worse, because once we recur, they no longer will promise you a cure. In the beginning that is a pretty scary outlook, but because of all of the ladies on this website that have been dealing with mets for a long time and living life pretty good, I have shed that fear and am facing this thing with a whole lot of hope. When I was visiting a patient in our local hospital, there was a sign in the gift shop that caught my eye and it reminds me of the attitude toward life that I read in so many posts on this web site - "Live A Good Life - in the end it is not the years in a life, but the life in the years" - Abe Lincoln. Of course, I am selfish, I want both. Keep posting and sharing your feelings, this is a great place to work through them. I will say a prayer for you.

TheresaM · 02-26-2007, 09:13 PM

Cathy take heart. You are one of the lucky ones in the sense that you responded to a treatment before. There is no reason to believe you will not respond again. It's a rollercoaster for sure, but don't for a minute believe that this is the beginning of the end. Too many other people have proven that you can pull out of something like this, as long as you can respond to a treatment.

As for the needle biopsy, personally I don't believe they are helpful, because in my case I've got tons of lymph nodes with cancer and I know they are cancerous because of the way they act. The docs want the biopsy "to be sure" but they are superfluous in my view. The assays that supposedly help tell whether your particular pathology will respond to any given chemo are very flawed and so don't offer you much assistance.

By all means get a second opinion or a third or a fifth (I always do) and tell yourself you are going to get on top of this cancer!!!!!

T

Cathy1 · 02-28-2007, 12:09 PM

Thanks to All of You!!! I have come to the conclusion that each of you is a hero and someday I hope we all meet in Heaven and tell how we each won our battles!

The shock is beginning to wear off. I had herceptin yesterday and will get it every three weeks, along with zometa and then femara once a day.My brother called the onc to see if I can get a biopsy but they wouldn't put him through because he wasn't listed as one of my peeps, haha- one of those authorized to speak about my case.
I want to go back on xeloda with the herceptin because I found it to be a pretty easy regimen although they did cut back my dose because of hand,foot syndrome. It still did a great job together.
Last summer, my scans were all clean and I asked my retiring onc if I could go off the drugs. He said. "Well, what is your plan?" I said, "Well I can come in for scans whenever you say, and if there's a recurrence, then I will go back on." He said, "Fair enough." My scans were good before Christmas and now this! I had cellutlitis in my lymphedema arm at Thanksgiving and they put me in the hospital on antibiotics for three days. That's when all this started I think. Yesterday my white count was a little off and the nurse asked me if I had an infection, fever or recent illness. I said, only this horrible pain under my arm.
Because I have stubborn rashes under my other arm, under breast and on c-section scar, I wondered if it is possible to have the same type of thing on my
other side under the skin? The dermatologist called them "inverted psoriasis". The thing that works on them is steroid cream and when people get severe psoriasis , steroids is the treatment that works.
Sometimes it really burns along the inside of my arm. Do any of you get burning? I am wondering if it is cancer eating away at my skin?
Thanks again for your help and I will keep you posted. God is awsome and so good to help me through everything and it is a great consolation knowing I am in the palm of His Hand. God Bless You All! Cathy

Vanessa · 02-28-2007, 06:36 PM

Best of luck on your new regiman. I will keep you in my thoughts and prayers.

Bev · 02-28-2007, 09:52 PM

Really sorry about the setback Cathy.It probably feels like you're back to worse than square 1. By all means get back on Herceptin and others to see what happens. I remember ancient posts where Gina talked about tumor load. Eg. If you have too many or too big tumors, they use up all the Herceptin before it can work on the little circulating cells. This would offer a reason to get some of this cut out. Do search this as my memory is foggy.

It may be worthwhile to research clinical trials. I'm hoping you can get it back under control. It's happened before where Herceptin+ wiped out mets. I hope that's what happens for you. BB

vickie h · 03-01-2007, 03:31 PM

Cathy, I am so sorry to hear about your scans, but please get a second opinion and start some treatment ASAP. You deserve to talk to another Onc and figure out all your options at this time. I am praying for you and know that things will change for you soon. Let me know how you do and what you decide. Much love always, Vickie