Cancer is back...I just knew it.
 

My onc just called me...I knew it wasn't good news. She wanted me to come in but I told her I wanted the NEWS NOW. I have recurrance in the right axilla area which was the breast cancer side. Recurrance in chest wall...not sure how extensive?

Also in the right femur and ilium. I've been concerned about the pain in my right hip...I even told her that leg and ankle has been swelling and causing pain. She wants me to come in today and talk about it. She said I should go to City of Hope or UCLA for a 2nd opinion. Said there are some clinical trials. I told her I would CERTAINLY be getting a 2nd opinion if not a 3rd opinion since the 1st time around with the first onc he told me I was doing TCH and I had NO say in my treatment...his exact words. She acts like its no big deal and said I'll get through this. Easy for her to say.

I can't have rads to chest because of my lung problems...so we can't zap axilla or chest wall. I am so scared right now. With my scoliosis and compromised lungs I'm not sure if I stand a chance. My husband is always home but today he made plans to help a friend move some things. He hears me talking to my onc and I tell him MY bad news & he asked if I had an appt today. I told him yes. Then he says he will leave his cell on and to call him if I need anything. (Gee thanks.) He could of stayed with me and went to my appt...but no...I can see what's more important...its obviously not me.

Chelee

Re: Cancer is back...I just knew it.
 

Chelee, most of all I am sorry you are so right. You are looking at it very honestly and even though it isn't good news and you don't want to have to do it at all, that is still a big plus for you.

Others know more than I do in many ways scientifically, but my sense of it very, very honestly is that the fear of the unknown makes the unknown a bigger shadow and a lot closer than it actually is likely to be for you.

The biggest challenge I see is, can you make the move to better care providers, or not? Is the gamble of staying with this outfit you are with worth it to you? I hope you can find a reasonable alternative as you work your way through all this.

Much love,

AlaskaAngel

Re: Cancer is back...I just knew it.
 

Chelee,

I am so sorry you have to go through this. You are in my prayer.

joyluck

Re: Cancer is back...I just knew it.
 

Chelee,
Dr. Joanne Mortimer at the City of Hope is wel qualified to ofer you a second opinion. I might also highly recommend Dr.John Link from Oange county.

Also, Cybeknife can provide extremely accurate targted radiation.

Regards
Joe

Re: Cancer is back...I just knew it.
 

Chelee,

John Link was someone who stepped up and wrote several books that talk about breast cancer diagnosis and how to deal with it from the standpoint of how things are, not just how they should be. I've never known anyone who went to him, but I thought his books were more on target in that respect.

A.A.

Re: Cancer is back...I just knew it.
 

I'm so sorry Chelee. Sending you love, hugs and prayers.

Mary Jo

Re: Cancer is back...I just knew it.
 

Sending my prayers and thoughts that you will
find the Dr. right for you and the treatment.
patb

Re: Cancer is back...I just knew it.
 

Joe, Thank you for the referral. I've been to the City of Hope (COH) before & did see one of there onc...but breast cancer was not their speciality. I've heard of Dr. Link and actually know of someone that was very happy with him.

Last time I called UCLA they said Dr. Slamon was not seeing HMO patients...I am now wondering if that's true? I think I'd like to go that way if possible. Since I'm Her2 I would really like a 2nd opinion with him. (I plan on getting two if not three this time around.) My cancer place played on my fears the first time and I didn't get a 2nd opinion. That will not happen again!

Chelee

Re: Cancer is back...I just knew it.
 

I am in shock Chelee, friggin' crap!!!

Hoping you can find a compassionate and skilled oncologist to help you kick this cancer to the curb.

Re: Cancer is back...I just knew it.
 

Chelee,

I am so sorry and angry for you. Please know that you are in my thoughts, and I wish you best of luck in finding a caring onc and the tx you deserve.

Hopeful

Re: Cancer is back...I just knew it.
 

AlaskaAngel, You are so right when it comes to the fear of the unknown. I feel sick right now...and it doesn't help that my husband left me here alone to deal with this.

He did say he would take me where ever I needed to go. When treatment starts its like living at the cancer center...so if I change I need to find one that is within reasonable driving distance. I'm just so over whelmed right now and can't even think straight...I don't know what I'm going to do. I'm still so angry at my oncologist. The minute my TM'ers started to go up exactly on 7-22-08...which was 4 months after completing Herceptin...I mentioned several problems I was having just to be blow off. I begged to stay on Herceptin and I almost can't help but wonder had I got to stay on it if it wouldn't of keep the cancer away? (I guess I'll never know.) I see my onc today at 2:30 and then I'll find out how much chest wall & axilla involvement? That's what I'm really worried about...I only have 30% use of right lung and 40% of my left as it is.

I will be demanding a brain MRI to be done asap also! I've had really bad headaches and have been on the clumsy side which is not like me. I am beyond stressed.

Thanks Alaska for your kind comments.

Chelee

Re: Cancer is back...I just knew it.
 

Dear Chelee,
I am so sorry to hear your news. I am hoping once you see your onc today and talk you will get some direction. This website will help you through, it is already with Joe's suggestions and others.

Maybe your husband also needs some time to settle in with the news. If he was supportive before I am sure he will be there for you again. Give him some time. In the meantime remember we are here. Let us know what you found out today and your future plans.

Many prayers are coming your way.
Love,
Donna

Re: Cancer is back...I just knew it.
 

Donna, My husband helped me alot through my first fight...but he was pretty angry the entire time...made it hard on me. He knows how important it is for me to have a 2nd set of ears today at this appt of all the times. There's alot to take in today and I'm not sure I'll catch it all since I'm so stressed out. I can't believe he decided to move a TV for a friend over going with me. I'm sure if he told his friend my cancer was back this guy would of said you need to be with your wife...this is unbelieveable. They could of moved his tv any time...it wasn't that important...obviously I'm not either. (Sorry...I'm just venting since I have no one else.)

Thanks for the prayers...I need all of them I can get.

Chelee

Re: Cancer is back...I just knew it.
 

Dear Chelee, I understand how upset you must be. You are right to look for 2 or 3 opinions. I changed oncs twice before finding one I trust and more important, one I could discuss my treatment with. I also understand how bad you feel about your husband's reaction. Maybe it is a way to protect himself but you should tell him how you felt about it. Nicely, but clearly. You have enough to carry. I hope you will quickly find another onc who will give you a good treatment. I am sure there are plenty of options to try the first one being to go back to H;
I send you love and courage.
Michka

Re: Cancer is back...I just knew it.
 

Dear Chelee, I am so sorry to read about this. It just sucks. I too hope that you find the right doc that "listens".
Take Care and God Bless.

Re: Cancer is back...I just knew it.
 

You need to stop questioning yourself. And I agree in the second opinion.!!!!

Also, I think, if I were you I would explore doing some holistic avenues along with the course of "whatever" the doctors ask you to do.... I am doing a combined approach of chemo/herception and then diet and a huge change in how my body can handle and heal itself. The catch is I have changed the pH in my body - and cancer can not survive, (grow or even stay active) in a body with a neutral pH. So.... the approach is change the pH in our bodies and live.... heal ourselves. It really is that easy.

If you want another approach - please email me for more info (I have a TON) at my personal email.
wheelistic@yahoo.com

I am thinking really good thoughts for you and believe that you will get some answers from your doc and also a 2nd opionion --- that will be a good start!

Hope this helps --- Karen

Re: Cancer is back...I just knew it.
 

Cheele,

I am sorry to hear the news. I know its not the news we wanted to hear. I was so panicked and depressed when I heard about my recurrence and I wanted to start chemo immediatly and started Navelbine and Herceptin. BTW I got two years of Herceptin and as soon as I stopped Herceptin I got my recurrence.
My advice to you is to consider just starting the Herceptin without chemo first and see how your tumor is responding to it. This way your body will have more strength to fight the disease. You can always start chemo if just Herceptin doesn't work. I didn't do this because I was so panicked and I wanted to get rid of the tumor fast.
Please concentrate on your health leaving aside all other problems. Hope you will get through this and never need to face it again.

Julie

Re: Cancer is back...I just knew it.
 

Chelee, sometimes good people can't deal with cancer. But the gang here can deal with it and give you support and advice. I hate that you were so right about the symptoms. But the good side is that you are strong, smart and determined. Today is a bad day. You have a right to be angry, sad, confused, and scared spitless!
But you are strong, Chelee. And your wisdom will walk you through the things to come. The one thing that I think is very important is to find someone you trust and admire to work with to fight this battle one treatment at a time.
Don't lose hope. I'm praying for you and cheering you on. ma

Re: Cancer is back...I just knew it.
 

Oh Chelee, no! I do hope that you find a Dr. who makes you feel comfortable with your decisions on which tx to pursue. You will kick this ca's butt again. We are here for you.

Love,
Lexi

Re: Cancer is back...I just knew it.
 

Chelee, I am so sorry to hear that.
Remember that you still have Tykerb to use if the re-occurrence is her2+, and lots of other chemos to try.
You might even ask about Adriamycin, since you didn't have it the first go round. It's tough on the heart, but tough on BC too.
Hang in there, girl. We are with you.

also for femur and ilium, demand a bone scan to verify mets.

Re: Cancer is back...I just knew it.
 

I am so sorry to read your news. By all means a second and possibly a third opinion is a good idea. It looks like Joe had some good suggestions in that area. Bring a tape recorder, a notebook and a pen to all appointments with oncologists. Ask the doctor if you can record the conversation first. Most will agreee. Otherwise take notes and ask the doctor to write difficult words and draw diagrams of the affected areas. Ask the doctor for more than one treatment option. Be sure to get all your concerns and questions addressed. Good luck. Hang in there and keep going no matter what happens.

Re: Cancer is back...I just knew it.
 

Hi Chelee,
I am shocked and so sorry. After you begin to navigate this new road, you will start to learn about the new trials and options that are open to you now and in the future. I have been living with stage 4 for 5 years and am still here and working. Right now my heart goes out to you because no one wants to hear this news.
Thinking of you.
Barbara H.

Re: Cancer is back...I just knew it.
 

Oh No not what I wanted to read from you. Just know prayers are with you. I do hope you can find another Onc WHO WILL LISTEN TO YOU!!!

Re: Cancer is back...I just knew it.
 

Chelee
First of all, I wish I would have been there to go with you today. I can understand your frustration and anxiety after "feeling" there was something wrong for so long, then to get that confirmation. Take a deep breath, then decide on a plan, which i know will be getting another opinion or more. I know that traveling for treatments can be a pain in the butt, but you need to go somewhere where your "team" listens to you and values your opinion. I have been on the mets roller coaster for 6 years now, and although its not easy at times, it is do able. You need to take control, and get your game plan together....you are strong, and know how to fight, and we are all here for you in any way you need us.
This is another stumbling block, that you will climb over and kick to the side...so you can continue your journey. Sending prayers and a big hug, and much strength, although you have already proven how strong you are!

Re: Cancer is back...I just knew it.
 

I am so sorry and send TONS of hugs and prayers...Please stay positive, look at all the LONG time survivors on the board not to mention all of those that DON'T post on here. Take care.

Re: Cancer is back...I just knew it.
 

I'm so sorry this is happening to you. I know everything is a blur right now. I had a chest wall recurrence also. Even though rads are out, you can do hyperthermia with chemo on the chest wall area. I think there are trials now doing this. So they would give you chemo (doxil, I think) and heat up the chest wall area to make the chemo more effective. Just another option.

Hang in there. I now it's not easy. Like Julie said, I too, just wanted the cancer gone so I jumped quickly into treatment. But it is really hard to think under the circumstances. Explore all your options.

I know that life is easier on my husband when he can keep his mind on work and not on my cancer. Maybe your husband was just trying to cope with the news. Still, It's doesn't make it any better for you.

Holding you close in thoughts and prayers,
Tonya

Re: Cancer is back...I just knew it.
 

Oh, Chelee, I am so sorry that you had to write those words to start this thread...I'll say it again...cancer sucks. It does sound like you need a different, more caring and approachable team. I think Jean, on this site, actually got in to see Dr. Slamon at one point, you might try and ask her how she did that. PLEASE do not let this discourage you for too long, you need all your energy to go on the attack once again. Fear is such an overwhelming feeling, turn it around and use it to your advantage !!! Much love, Suzan

Re: Cancer is back...I just knew it.
 

Chelee,

I am sorry to hear of your recurrence - but I know that you are one tough chick and you will fight it with everything you have, and we will be at your back!

Vent all you want, that's what we are here for.

all the best
caya

Re: Cancer is back...I just knew it.
 

I am so sorry -- but at least you did know it and you pushed! Think of how much you have learned to advocate and take care of yourself.

I'm sorry about your husband, too, but maybe you should just tell him "I need you now." It sounds like he didn't know what you wanted...

I am praying for you and your loved ones.

Rebecca

Re: Cancer is back...I just knew it.
 

I am so very, very sorry for your miserable news. I will be praying, Chelee.

Re: Cancer is back...I just knew it.
 

Chelee,

My heart sank when I saw your post. Please know I am keeping you in my thoughts and prayers and am her for you.

Please do seek other providers that will be a part of your team and who you will be comfortable with attending to your needs and concerns.

Your strength will be your asset as you move forward.

Re: Cancer is back...I just knew it.
 

just wanted to send out a big hug to you! I'm praying for you.

Re: Cancer is back...I just knew it.
 

Chelee,

I always loved to see your Golden Hamster on your avatar. And I always enjoyed your postings. You are one tough cookie. And I know you will get through this.

Caregivers are just human like you and me. They have their own problems and priorities. I was told not to drive any more, so I'll have to completely depend on my husband. (Picked up a special transit application - $4.00 round trip from the residence for medically qualified patient - but haven't filled it out yet.)

Give us a report on your appointment. And I hope tomorrow is a brighter day for all of us.

Re: Cancer is back...I just knew it.
 

I am so sorry that you had to hear this diagnosis. Please be assured that prayers are being sent up for you.. You have a lot of people praying for you... and that includes me.
Charlotte

Re: Cancer is back...I just knew it.
 

I just wanted to say that I am so sorry that you received the news that you did. You are in my thoughts and prayers.

Re: Cancer is back...I just knew it.
 

Chelee,

I can just imagine the frustration with your onc, and I don't blame you. After all, you'd been complaining about symtoms for a few months and your markers were out of the normal range.

Do check out your options, because you might be able to have rads to the chest wall. As Joe pointed out, some of the new machines really target a lesion. The beam "bends" to avoid healthy tissue. I had this type of beam to the head after the brain tumor was removed. And Tonya suggested hyperthermia and chemo, which is being brought back to fight cancer that has spread to the chest wall.

I'm sending you good vibes for finding the right solution.

Joan

Re: Cancer is back...I just knew it.
 

Oh Chelee,

This was not the news we wanted to hear. I am sure that at this point you are still numb (sometimes a good thing) but hopefully tomorrow you can get up, regroup and start making some plans. It looks like it is time to get some other opinions - you have some excellent options to look into right in your neighborhood. I had the pleasure of hearing Dr. Link speak at a conference and I must say I was quite impressed. He seemed to know a lot about HER2+ cancer and he shouldn't be too far for you. As you know, COH has some excellent doctors, as does St. Joseph's, just make sure you get a bc specialist this time around.

You can do this Chelee, I know you can. We are all pulling for you. Please keep us updated.

Take good care,

Gerri

Re: Cancer is back...I just knew it.
 

Dear Chelee,

I know that there are no words that could give you confort at this time. I just want to mention two things. First, that we will all be praying and that we will all be here for you as we have always been. Second, I had a hypertensive crisis today while still at work and ended up seeing my onc surgeon for a check up, I was so desperate at the moment, during his conversation, he mentionned the case of a girl who developed metastasis to the bones due to bc, this was 20 years ago, she is doing fine and well, so, even when you may feel bad right now, be sure that there is treatment that can help you out there. I also know a lady that has same situation, she is doing great and enjoying life at age 72. We all love you.

Paty

Re: Cancer is back...I just knew it.
 

Thank you all for the support because I really need it right now. I am doing this alone and its so hard. I'm feeling so over whelmed today I can't think straight. I know you guys are the only ones that really get "it"...no one else can.

Joan I am writing down every suggestion people give me. The Gamma knife & hyperthermia both Joe & Tonya brought up. I don't plan on missing anything this time around. The first time they played on my fears and won. I am so thankful for this Her2 board because without it I would be so alone. Right now I don't know what I feel...a combination of so many things. I always knew I could recur...but I honestly believed I was going to make it. Living in denial I guess.

I know I plan on going up to COH to see the onc Joe recommended if she is seeing new patients. She has an impressive backround...she also mentions she loves working with woman. I would like to get a total of 3 opinions if I can get it done quick enough. My onc told me Dr. Slamon is not seeing any patients anymore? I asked if she meant HMO patients? She said he is not seeing HMO or PPO? Hummm? Does anyone here know if that is true? (I really wanted to see him.)

Is there any place on the net that lists which cancer centers have the best outcomes for Her2 bc? I use to have a list of which centers treated what types of cancers and which ones had the better outcomes...I can't seem to find that. Anyone know? I'm on overload big time.

Chelee

Re: Cancer is back...I just knew it.
 

Dear Chelee,

This SUX big time! I am so sorry. Try not to visit "what if", as it doesn't help at all.

I bet your husband is just plain scared of losing you. He may need some time to adjust. That's what men do, when they are scared: they withdraw. Or at least, most of them do.

If you need someone with you today, tomorrow, the next day, ask a friend. A stable, sensible, good good friend, if you possibly can. I did. I didn't want the extra stress of dealing with my husband's emotions.

Love

Jacqueline