Went for mammo and cancer has returned...

[linn65]

I thought today would be a routine checkup. Well, I was wrong....the doctor found a lump in my lymph node above my clavicle bone. They did a biopsy and confirmed it was. She said stop the tamox. Because it is not working. And we will do a bone scan and cat scan to see about it spreading other places. She talked about Tdm1 or herceptin and projeta combo. But first of scans and a lot of blood work. She made it sound in order to live i could never bee off treatment......I am in shock. I don't want to think, and I am terribly sad. All the treatment before seems to be in vein, and I don't think I can do it sell again.

[JennyB]

Linn,

I am terribly sorry to read of this - sending love and strength from down under xx

[Aussie Girl]

So sorry to hear this, Linn.

Take time to absorb the news and put one foot in front of the other, taking one day at a time.

You have friends here, and many have walked this path before you.

Gentle hugs

Diane

[hestko76]

I'm sad to read your news, Linn. I'll pray for strength for you. Stay strong and positive!

[linzer]

I am so sorry. I hope that you get solid answers and a plan in place. We are here for you. Please update us when you are ready and able. - Linda

[LaDonna28]

Linn,
I am sorry to hear this news. My prayers are with you and know that this board is a great support for you. LaDonna

[europa]

I am so sorry. I never know what to say when I hear news like this. I can only imagine what you are going through. But know this, we are all here for you. We are all praying for you and we are all listening when you want to vent.

[sarah]

So sorry to hear this Linn. I remember how devastated I was when my cancer came back after being told 5 years earlier that I was cured but there are lots of treatment options and it's 10 years out from the last recurrence and I have had a lot of fun in those years. I was also told I'd be on treatment forever but they stopped it after 6 because things looked so good, so forever isn't necessarily forever. I hope you will get over the shock soon and get back into the fight and treatment. It's so hard and so sad to have do it all again but living is fun. You have to get back to that point of believing you can kick it again and get back to living and having fun. Be patient with yourself and watch some funny movies and play some of your favorite music really loud and dance around the room. and eat some chocolate. Cancer sucks but we all learn we're stronger and tougher than we think we are. Go to the gym and get into shape for the fight, you know you can do it because you've done it before. Again so sorry you going through this.
big hug and love
sarah

[KDR]

Hi, Linn,
I am sorry to hear that you have had a little setback. Each day, one foot in front of the other. Day by day. Will be thinking of you,
Warmly,
Karen

[jaykay]

Crap on a crapstick! You are stronger than you think you are. Breath
Janis

[Jackie07]

Hi, Linn,

That sure is upsetting! I remember the shock I experienced back in 2007 when I heard of the recurrence. (At that time, I thought any recurrence was considered stage IV ...)

We have a lot of sisters here on the board who are long-time stage IV survivors. Please check out the thread 'Calling all stage IV sisters' http://her2support.org/vbulletin/showthread.php?t=48453&highlight=calling+stage+sisters and be encouraged.

Sending you good vibes.

[Pray]

Sorry about the set back. Please know that you and your family are in my prayers. Gods blessings are all around you. His Peace my sister��

[tricia keegan]

Linn I'm sorry to hear this and even sadder that the Onc made you feel that way, I hope from reading all you have here that some of the survivor stories will have given you some hope and assurance, its still possible to get back to NED with a good response to chemo so hang in there, you can do this!

[thinkpositive]

Linn,

I've been thinking about you all day after reading your post. I'm so sorry that your cancer has returned. I can only imagine how you must feel. When I was diagnosed I was stage 3C and did have cancer in the supraclavicular lymph node which is where I believe you are saying your recurrence is. I'm doing well now and there are so many others at this stage and at stage 4 who are also doing well. Hang in there, Linn

[BonnieR]

Keep the faith

[Carol Ann]

Linn, I am so sorry. This SUCKS! Please know we are here for you to listen and support you, if you need to vent, rage, cry, and feel and do whatever you need to do for you.

Carol Ann

[suzan w]

I am sorry to hear of this news. Even though it sounds like your oncologist might have been a little softer in his manner (after all...we are very sensitive!!) It does sound like he has a plan. Every day I have to do things to try and keep healthy, maybe not chemo and treatments per se, but I have to pay close attention to what I eat, exercise, chemicals in my life....I never really thought much about this "before". It sounds like this lump was found early and that you are being vigilant. Stay strong, cancer warrior!!!!!

['lizbeth]

OH NO! This is truly sucky.

I sincerely hope that is the only place with cancer.

I know that you are terribly discouraged, and who the hell wants to do chemo, no one here!

Let us know the results of your scans and tests.

Ah rats.

[agness]

Herceptin and Perjeta helped rid my friend of mets to her lung last winter. There is hope. Deep breaths. I know that not everything responds equally but you haven't ever tried Perjeta.

I will be thinking of you.

[valleygirl]

Will keep you in my prayers

[MaineRottweilers]

I am so sorry to hear this. I can only imagine the anger, frustration and fear you must be feeling. You CAN do this, you've done it before. You know what to expect this time and how to prepare. You WILL do fine. Set your mind to it right now. You WILL do fine. I will keep you in my prayers.

[Redwolf8812]

linn65 - oh, man, have I been in your shoes. I was initially stage 3c, went through taxol & herceptin, then adriamycin & cytoxan, than double mastectomy & hysterectomy, no reconstruction, was finishing up my herceptin when the oncologist did a PET "just to make sure". There it was - a big old goomba in my liver. I was so mad! What did I just go through and why if it wasn't going to work? I was literally like, ARE YOU KIDDING ME?! But the rage helped me carry on, and you will too. We're all here for you. Come here to vent, rant, whatever.

You're included in my prayers.

- Penny

[Lien]

This SUCKS indeed. But I can't understand why your doc would say you will never be free of treatment. There is no way they can know that. You could reach NED (no evidence of disease) or be stable for years and years. So, like others said, just try taking it one step at the time. They have to find out whether you have any other spots of cancer in your body, because that would determine your best treatment options for now. But after you've had all those tests, you will be able to come up with a plan of action. Depending on what they find, they will probably suggest some options and if you need help deciding, there are lots of knowledgeable people here who can help you with the pro's and cons of each treatment.

TDM1 could be a very effective treatment, so I'm glad they suggested that.

It will take some time to let this news sink in. It is very tough to deal with, so take all the time you need. You can do this and we will be right beside you.

Hugs

Jacqueline

[Adriana Mangus]

Linn,

Not only can you do it, you are going to do it!

There are a lot of us who never imagined that our cancer would returned but it did.

Now, lift your chin up and get all the information needed before you embark
in a treatment that will benefit you the most.

Your stage IV sisters will be here for you, supporting you and providing
the best advice we can based on our own experiences.

Please keep us posted.

[Lnmum]

Linn, I'm praying for you. So sorry to hear you're going through it. Prayers for hope and healing.
Loren

[Pamelamary]

Sorry to hear your news, Linn. I can only echo the others and say that statistics tell us nothing about the individual - we live in hope, supported by this community.
Warm wishes.... Pam

[norkdo]

LINN LINN LINN!!!
So anxious to assure you that i have yet (will do so) to read others' replies!
I, too, upon first diagnosis, however, was told the cancer had gone to that exact same lymphnode!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Special radiation machine totally erased it in nine radiations!!!!!!!

[linn65]

My doctor is wonderful, And I am so glad I switched oncologists. I have this board to thank for even giving me her name because I wouldn't have even known to go to her. My previous qONC didn't hear me but she does. I saw her the first time in February and this past Thursday was supposed to be a mammogram and see ya in idk 6 months or a year. I don't even know the protocol for it. I am still in shock that it's happening. I had them take my stupid port out on 3/14/14 because I wanted to believe I was done. Just the thought of putting my port in again sounds YUCKY......on the bright side she felt it, and my other ONC never really felt me. Just asked what I was doing for fun and nurse Ratchet acted like I was annoying with all my questions.

Dr. Miller told me and promised me she will always listen to me and for me that was huge. She pulled all kinds of strings to do an ultrasound guided biopsy on the same day last Thursday she found the lump. She didn't want me to wait, drive 3 hours round trip and truly cares about me. Then to be a researcher, knows about trials, explains things before I even ask, is honest, and I know she cares, I wasn't a number, she held my hand, and hugged me and through in she is extremely intelligent, and I thank God this board told me about her because she could very well save my life.

I go Thursday for results and with her I feel I will never need a 2nd opinion....

[CoolBreeze]

Linn, I'm so sorry.

But you know, you can do it again. That first chemo you do when early stage is difficult because they throw everything at you. It's more gentle the second time.

I've been on it for 5 years now and I'm doing well. They have so many great drugs for us now.

As about Perjeta and Herceptin, with or without docetaxol. It worked for me.

But I know how sickening it is to hear that you have cancer again. You must feel so betrayed. I hope they clear this up and it is the last time, and they don't find it it any organs or bone. *hugs*

[SusanN]

Beautiful Linn...just want you to know I love you and am praying for YOU...HUGE HUGE HUGS!!!

[roz123]

Hugs Linn
Praying it is local only

[Adriana Mangus]

Linm,

So glad to hear you found the right oncologist, this is going to make a huge difference in your treatment and well being, also. Take it one day at a time, you don't need to know everything at once, things will works out. Happy for you.

Hugs. Please keep us posted.

Adriana

['lizbeth]

Linn,

Glad you switched. Wasn't sure what was going on, and was a little surprised that you were told you would be on treatment continuously for the remainder of your life, before the extent of the cancer was determined. And surprised that you were taken off treatment for ER, especially since you are so highly expressed.

I am waiting for more news. Hoping that it is just that one little node, and that is very treatable with a short time back to NED for you.

[jaykay]

My friend, who is er+/pr-/no her2, recurred with liver mets 2 yrs after she was finished treatment. Her oncologist immediately took her off arimidex because it was obviously not holding the cancer at bay.

Linn, thinking of you all the time. Our journeys began about the same time. As many have said, let's hope this is localized.

Xoxo
Janis

[linn65]

It is in my lymph nodes under my arm too. She said it is stage 1v and most likely it is through my whole body but microscopic and wants to keep it that way. I had my port put back In today and am getting herceptin And projeta. She said the goal is to get it to stable. She will do 3 cycles of this and if lump above clavical bone has gotten bigger we will do tdm1. She said lymp nodes under my arm with cancer are very deep under my arm so being able to feel his one above clavicale is a good thing.

My neck is really sore where they port in and bruised. I haven't felt any side effects from treatment yet but it seemed SE came on day 3 but maybe I will get lucky and it won't.

Elizabeth I have been taking tamox until lump was found 8/14 and she took me off it and said it wasn't working.

Also, how can one be going from stable disease to NED??

['lizbeth]

So, you are saying that a Pet scan showed cancer in the nodes in the axilla, but these are inoperable? And you have cancer in the supraclavicle nodes too.

http://www.cancer.net/sites/cancer.net/files/styles/medical_illustration_web/public/breast_stageiiic_print.jpg

And the ASCO explanation of Stage IV:
http://www.cancer.net/sites/cancer.net/files/styles/medical_illustration_thumbnail/public/breast_stageiv1_print.jpg

Chrys - I'm really worried because my friend did the same thing, went off the estrogen treatments with a recurrence because the Tamoxifen "wasn't working". Maybe it was working.

I strongly like the suggestion of the Herceptin/Perjeta combination to start. I strongly dislike omitting any treatment for ER positive characteristic of your recurrence tumor - due to your former experience with the increase in the ER characteristic of your tumor during your initial treatment.

I am skeptical about the about the "microscopic" cancer throughout your whole body. This is speculation. Currently, on the information you have shared, you seem to be a stage IIIC. Perhaps there is something that I am missing?

Because your oncologist is in the mindset that you are Stage IV, she has chosen a goal of "Stable". Traditionally that was the best outcome for decades. We Her2 ladies have been blessed with Herceptin, Perjeta and TDM1, along with Taxanes, Carboplatin and many other options.

I've been on this board a long time, and I've seen ladies with liver mets, brain mets, and bone mets reach the coveted NED.

You have evidence of regional mets, and a good chance of eradicating them.

Frankly, I just want to be stuck with your craziness on this board for many decades to come. I'm truly sorry you are going through this.

[Mtngrl]

Linn,

I'm with 'lizbeth on this one. From what you've told us it sounds like a local recurrence, not Stage IV. Also, there are other aromatase inhibitors besides Arimidex. If I had ER+ disease I'm pretty sure I'd want an AI.

Don't worry about anything until you have to. Stay in the now as much as you can.

[thinkpositive]

Hi Linn,

I noticed in your signature that you are stage iv. However, I had cancer in the lymph nodes in my arm and in my neck and was stage 3c. I'm wondering why you are considered a stage iv? My understanding is that recurrances are only stage iv if they travel to other areas besides the breasts and local lymph nodes (including those in the neck).

[Mtngrl]

Linn,

I hope you're feeling less overwhelmed and anxious. Please let us know how you're doing.

I am on just Herceptin and Perjeta, and I find it quite easy to tolerate. It's not chemo, but two antibody treatments to help your own immune system handle the cancer. Again, if I were you, I'd ask to be put on an aromatase inhibitor as well, unless they've biopsied the lymph node and found it is no longer ER positive.

[CoolBreeze]

As the other ladies have said, it isn't Stage IV if it's not in an organ or bone, you would be IIIc. I wouldn't want women like thinkpositive to get scared or be misinformed.

I have a friend who was diagnosed IIIc almost five years ago now - like you, she had it in her lymph nodes as well as her chest wall. She is doing fine now. She's been on lupron but is about to finish that up. (She's young).

As for being on treatment forever, that's just not always true even for Stage IV. My doctor has said that if I remain NED as a person with Stage IV cancer for a year on the therapy I'm getting now, we may stop it. Perjeta is such a new drug that we don't know what long term effects are.

My cancer spread to the liver; I had a liver resection, a liver ablation, SBRT, 7 different chemos, and Perjeta/Herceptin is what made me NED. And I have a chance to be off treatment, so you certainly may get that chance!

The theory of cancer cells spreading through the body is not one that is proven. In fact, there is a term called oligometastases which means that even in metastatic women, cancer may only be growing where it landed and isn't necessarily everywhere. And, I may fit that category as cancer has never spread beyond my liver. The truth is, there is still a lot of unknowns about the mechanisms of metastases.

I don't think it is wise for any oncologist in 2014 to predict any long term prognosis for anybody in any stage of disease, with the exception of those in the last few months of life. There are so many new, effective treatments coming up - these days, you never know. I certainly never expected to be where I am today and there is no reason this can't be true for you as well.

I hope you have relaxed into the news. I know it's horrifying to hear you have to go through it again but you do learn to accept it and manage it - I hope you are in that stage now. *hugs*

[BonnieR]

I just want to say, once again, what a blessing CoolBreeze is to us all. Such a voice of reason and compassion
Linn, I hope you are "settling in" and digging in. It sounds that you have found the right doctor. That can make such a difference
Keep the faith

[sdstarfish]

Hi, Linn,
Just wanted to offer moral support. I know this must be really frustrating to say the least. I'll be thinking of you.

[norkdo]

Linn please read deeply all these wise Amazonians have said. God, it makes me so amazed and honoured to "know" these incredible women.

[linn65]

Cool Breeze I did voice record the ONC, I did not ask the stage my sister did and she said iv. She said it's incurable/terminal but we can do these treatments. I see her Sept 18th after 2nd treatment , and I will ask her. I know she will be talking to me about a hormone treatment which I assuming maybe arimedex. But I have no idea. When I do I will let you all know.

[linn65]

She is a very good onc. Dr. kathy Miller at IU Simon cancer center. She was recomended to me from someone on this board.

[StephN]

Dear Linn -

Hated to hear your news, whatever the stage, that you need to go back on treatment.

I have heard Dr. Kathy Miller speak at the San Antonio Breast Cancer symposium more than once. She has been on panels with top oncologists from around the country/world.

Seems like a good idea to ask her specifically what stage she thinks you are and why. There may be some new thinking or maybe she had to stage you a certain way for insurance to cover your new treatment.

From what I do know of Dr. Miller, I would trust her with my treatment plan.

Just concentrate on your body doing its work to get you back to NED.

['lizbeth]

We are all interested in finding out why you have been staged as IV, instead of IIIC.

Frankly I don't envy Dr. Miller, Linn65 is very popular on this site.

To be honest, a goal of stable is not acceptable to most of us. We wish better for Linn65. A return to NED status, a future that is not based on continuous cancer treatment.

Linn65, this is a difficult time for you, and we care about you very much. I'm glad that you like your doctor. However, if there is a way to return you to NED, and keep you there with a minimum of cancer treatment - I personally would like your doctor a lot better!

[linn65]

Okay Lizbeth that made me cry a little.....I love your passive side ��l. Actually when the lump was found on my very first mammo for the right side I was in complete shock. I want to be NED I feel like I just got my life back and it's simply awful. I don't give a flying flip what stage it is....I just pray it goes away. Btw right breast mammo is good. Woot woot.

I know you just want to keep me as a room mate when I am placed in the asylum. ;). Too bad some don't live close to Illinois I am having a first time ever BIG bday party with a Dj and open bar for my big 49. ;)

['lizbeth]

What? You are throwing a huge bash? If I win the Powerball jackpot tonight I'll be there!

I like your new photo.

I thought we had nixed the asylum plan for the cruise ship retirement.

Why don't you have the affected nodes removed?

[Mtngrl]

Linn,

I think you're going to do fine. I also pray it goes away and you get your life back.

But I'm kind of a poster child for "cancer as a chronic illness," and it's not all that bad. My cancer apparently does not want to go away, so the deal I've made with it is detente. I'm happy to let it hang out in my body if it so desires (cancer is us, after all--not a foreign invader but just some misguided and/or overly ambitious cells) as long as it doesn't kill me. After all, it's in both our best interests for the "mother ship," (my body and mind) to keep going.

Just keep doing the next right thing. Live in the moment. Breathe. Be grateful. And let your light shine.

[SusanN]

linn...You look gorgeous...know I'm praying for you...get those "combat boots" on and "lock & load!!" Being in Army after 13 years, gave me alittle ammo...YOU WILL DO THIS AND CAN DO THIS!! HUGE HUGS!!!

[linn65]

I am a little down today, but I had a great weekend. Keeping busy is good...but today's seems yucky.

[Carol Ann]

Hi Linn, I'm sorry you're having a yucky day. I'm glad you came here to express that rather than hold it in. Please know we are all here for you no matter what kind of day you're having.

Glad you had a good weekend!

Carol Ann

[thinkpositive]

Linn,

I hope you have a better day today. It is understandable to have days when you just feel down. This whole cancer thing is an emotional roller coaster. For me, when I get to feeling down I try to think of all of the things that I have to be grateful for and all of the things that make me happy. Some things are pretty simple: enjoying the sun on my skin, cuddling up with my kitties, drinking my coffee. I think of my friend who was paralyzed in a skiing accident. One of the things she misses the most is just being able to sip on a cup of coffee. I'm grateful today that I CAN.

I'm going to do what I can to beat this cancer thing It may be that my life isn't going to be as long as some folks as a result of this disease. I cant control that. What I can do is to enjoy the days that I do have and focus on being positive rather than wasting the time I do have feeling down.

There is so much we have to be grateful for including all of the treatments that are available to us. Much progress has been made and continues to be made in HER2 treatments that will benefit folks like us.

Hope you have a good day today and know that I'm thinking about you and sending positive energy your way.

Brenda

[starwishn2]

Linn- I was sorry to read your "news". I haven't been on the board for awhile so I apologize for such a late response. It sounds like you have an amazing oncologist. All fingers and whatever functional toes I have (darn neuropathy) are crossed that you will do well on your treatment and will be NED again.

Hugs {{}}
Jeri

[IrvineFriend]

Crap is an understatement because I know your thoughts on recurrence. I'm so sorry I'm just sending my well wishes now as I haven't been on this site for several months.

When is your party??!! Have the time of your life and it's really one day at a time. I'm so grateful for you, you were with me for my entire first infusion by phone, and I'd do anything to be with you as well now.

Feel free to call me anytime to chat, cry, laugh, whatever is going on.

XOXO