Join Us

We are 217,588 members in 84 forums discussing 160,642 topics.

Help with Abbreviations

Topic: So confused about treatment/Lung mets

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: May 7, 2007 08:45PM

Jubelli wrote:

Hello everyone. I've been lurking since my initial bc dx about a month ago. I had a 2.5 cm tumor removed, no node involvment, estrogen receptive and HER2 positive. Now I've just found out I have lung mets as well, and I have no idea, other than the vaguest idea of hormones, about the treatment for this or if my HER2 status will also affect treatment options.

It's been encouraging to read about so many brave women living full lives with mets, and I hope I can be one of you.
I'm just not even sure at this point what kind of questions to ask or where to turn. I had been prepared for TCH chemo and radiation. Now what?

Thank you all so much for being here. I know I'm probably not making a whole lot of sense right now.

Jubelli Log in to post a reply

Page 1 of 1 (30 results)

Posts 1 - 30 (30 total)

Log in to post a reply

May 7, 2007 10:20PM boobbuster wrote:

Jubelli-
I too have lung mets. My first treatment (Carboplatin) for mets put me in remission for almost a year and then another met came back. I've been taking chemo (Taxotere) for about 6 months now. Since you're ER and HER2 positive, you'll be able to take drugs some of the antibodies too (Herceptin, Tamoxifin etc). There are alot of treatment options open to us and you're in the right place here on breast cancer.org to learn from other women's experiences and expertise.

Can they surgically remove the mets from your lungs? I had a VATS (Video Assisted Thorasic Surgery) procedure the first time and had the spot sugically removed (also called a wedge section). It's a minimally invasive procedure.

The good news is that you're chemo virgin and that chemo will more than likely put you in remission for along time. Ask your doctor if you can do DOSE DENSE chemo. It's a very agressive treatment and could put you in a deep remission.

Hope this helps. Don't loose hope. You're not alone, we're here for you. This isn't a life sentence, it's just a new normal. God is able, Stephanie
Log in to post a reply

May 7, 2007 10:47PM Jubelli wrote:

Thank you for your words of encouragement, Stephanie. I'm so glad for you that your treatments have been working so well for you. You seem so strong.

I have more than one spot in both lungs; all are very small, so I don't know if I'm a candidate for surgery at all. My onc isn't very pro-chemo for bc lung mets, and I don't understand that either. The information I've been reading this evening seems to give a mixed message about chemo for lung mets. It seems as if hormone treatment and herceptin are the new generally accepted way to go. Perhaps you or
someone else have knowledge of why chemo "wouldn't" be an option in my case.

I'm getting a second opinion, certainly. I'm in Sequim, WA, so someplace in Seattle would be the natural choice. Is there anyone on the board who has had good experiences with any of the various cancer centers there?
Log in to post a reply

May 7, 2007 10:54PM joanne1428 wrote:

Hmmm... your onc isn't very pro-chemo for lung mets? Are you sure it isn't radiation or surgery that he is against? I'd ask for more information about that one FOR SURE..... chemo is used with lung mets, often with success...

Maybe he just feels that it would be better to try hormonals and other drugs prior to trying chemo?

Chemo can be effective against lung mets, and at the minimum they give you more time, that is what I am getting out of my chemo for triple negative lung mets.... not getting chemo was never discussed as a legitimate option for me.
My hopes are not always realized but I always hope - Ovid Dx 4/2006, IDC, 1cm, Stage IV, Grade 3, 0/33 nodes, ER-/PR-, HER2-
Log in to post a reply

May 7, 2007 11:23PM Jubelli wrote:

No, it's actually the chemo. I definitely am going to delve into the chemotherapy question much deeper. I've been reading about different chemo treatments for mets right here on breastcancer.org, and it seems to me that it's absolutely one more thing I should do. It could be that he wants to try the hormonals/Herceptin first -- I just don't know. But I intend to find out and, again, get a second opinion.

Log in to post a reply

May 8, 2007 05:02AM GailAnne7 wrote:

Jubelli
I was dx'd with lung mets in August of 2003 so that's 3 years and 9 months ago! My first treatment was a hormonal, Femara, and it shrank the tumors and held them at bay for 2.5 years. Then we tried other hormonals but I didn't get as good a reaction so NOW I'm on chemo (Taxol and Avastin - you'd do Herceptin instead of Avastin). The two ONCs I've been to have had the philosphy that with ER+ you try the hormonals first and save the chemo for the second line of defense. I hope that helps.
Take Care
Gail in NJ
Log in to post a reply

May 8, 2007 01:36PM katie11 wrote:

Hi Jubelli,

I am so very sorry you are having to deal with this diagnosis. You have certainly come to the right place for support and advice though.

I don't have lung mets but I would certainly advise that you get a second opinion, as it will help you make some difficult decisions. Some oncs tend to go with hormonals first, others (like mine) start with the more aggressive chemo treatments, there are others still who begin with a combination of both. It's a difficult decision to make but a second opinion will definitely help.

Take care and let us know how you get on.

Katie x
Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
Log in to post a reply

May 8, 2007 04:33PM janscovill4444 wrote:

I also have a lesion in my lung got the results of a recent Pet Scan. My lesion hasn't grown since being on Falsodex. So I have decided to have it removed surgically. When I was diagnosed with lung mets in 2003 I had surgery but the doctor was supposed to remove the lobe but because he felt other lesions he only did biopsies and closed me up. Probably thinking I was a goner so why bother to do anymore! Anyway only the one lesion was malignant and all the other were B9. So the surgery was really a waste because I had already had a needle biopsy and knew I had mets and those other lesions never showed up on the Pet scan. So after 4 years I have decided since I only have the one lesion to have it finally removed. My onc agrees and although he won't say I know he knows the surgeon really screwed up. I will use a different surgeon and I will have it done by VATS, which is minimally invasive. Thank God all is stable!!!!! Four years of mets and 9 years of BC. Be optimistic and don't give up!!!!! Jan

Jan Dx 5/1998, IDC, 2cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
Log in to post a reply

May 8, 2007 05:07PM sparklegirl wrote:

Since you are triple positive, maybe your doc wants to start with the hormone treatment frist and see what happens. You may be able to hold the mets back for quite a while just using this type of treatment.

You may want to seek out a second opinion. Maybe a tumor board?

Karen
Log in to post a reply

May 8, 2007 08:19PM Jubelli wrote:

Thanks, everyone, for sharing your own treatment stories. You've all made me feel a bit more hopeful. I feel like a combo of both hormonals and chemo would make me feel psychologically better, Katie. Gail made a good point about saving the chemo until and if it's needed. These are good suggestions about things to talk to with my onc.

I'm going to talk to my onc in much more detail about these different therapies and perhaps start the hormonal treatments -- just to get something going -- while I seek a second opinion. I can't decide whether to do that through the Univ. of WA or Fred Hutchinson in Seattle.

Karen, what is a tumor board?
Log in to post a reply

May 8, 2007 09:45PM sparklegirl wrote:

A tumor board is made up of a group of doctors (onc, rad onc, surgeon, pathologist, etc.) who meet to review treatment options for cancer patients. Also, patients who want a second opinion can go before the tumor board.

Most hospitals have a breast center where they can give you all the information you need and will also get all of your files, scans, pathology reports, etc. together for you to present to the board. And they usually have a nurse who will attend the meeting with you

When I was going through treatment, my onc felt that my early stage disease did not need to be treated with Herceptin. He felt the risk was greater than the benefit. I didn't agree with him, so I went to Stanford and met with an onc there and also went before the tumor board of one of the local hospitals (different hospital from where I was being treated).

It is a free service and I found it to be wonderful in helping me make an educated decision regarding my treatment.

By the way... I did a year of Herceptin with my oncs blessing.

Karen
Log in to post a reply

May 8, 2007 11:12PM Jubelli wrote:

Thanks, Karen. I'm going to insist that I go before one. The cancer center I'm going to is apparently quite helpful about gathering all the info needed for getting a second opinion. There's only so much research I can do on my own, and sometimes it all seems contradictory. Lots more questions than answers, huh?

Log in to post a reply

Jun 6, 2007 06:49PM SherylEB wrote:

Hello my sisters in healing!
I too have just joined the lung mets "club"! I have so many questions, comments, concerns. The pain piece is quite the adventure and I am not sure how to approach it.
I am thinking that I will keep this as an opening dialogue, rather than a roll call.
I look forward to talking with others!
I thank you!
Sheryl
Log in to post a reply

Jun 6, 2007 08:03PM jacqniel wrote:

Sheryl,
First welcome. Sure wish you didn't have to join us!
Secondly, might I suggest you start a new post so people realize you are new and have questions?
If you decide to start a new post, could you specify what your questions are about pain?
Thanks - and hugs - Jacque
Log in to post a reply

Jun 21, 2007 09:51PM kathysugarland wrote:

Jubelli
Welcome to the sisterhood. I hope your treatment goes well and that you can have peace in your heart over this new cancer stage.
Your post has given me a few things to think about. I have a question for our veteran lung mets sisters.
I am new to this site. I was dx with lung mets 2 years ago. My dr at the time told me that surgery was not an option since the cancer spread through the blood system.Several of you mentioned the option of surgery. Please tell me more. I had 30 rounds of rads and did just fine with the treatment. Two months ago my scans showed several shadow that could be new tumors or maybe just scar tissue from the rads. I will have the scans repeated this week and the dr will advise me. Ladies if it is a new tumor what should I ask? I am currently on arimedix. Should I ask him why surgery was not offered to me? After the rads to my lung I have much -much difficulty exercising and even walking up stairs. My lung is damaged. What should I be asking? HELP
Log in to post a reply

Jun 29, 2007 02:39PM Lighthouse1 wrote:

I also had early stage cancer, thought I was "cured" but then a single, small lung nodule showed up on my routine CT scan. I had it removed surgically (.5 cm) through the VATS procedure, and followed with chemo of carboplatin, taxol, and hercepten. It has been 8 months now, I am still NED and holding my breath. I am working full time, hiking, exercising and living a full life. If I were you, I would get a second opinion. My treatment really helped. The surgery was not bad at all -- the chemo was tough though. I thank God for every NED day!

Log in to post a reply

Jul 1, 2007 08:47PM kathysugarland wrote:

Lighthouse,
What is VATS?
Kathy
Log in to post a reply

Jul 2, 2007 09:24AM RoxanneNJ31 wrote:

Hey Jubelli,

Have you ever gotten a second or even third opinion so that you know for sure that the doctor is doing the very best they can do for you. Some doctors have their reasons for what they are doing but I know that cancer is very aggressive so the treatment regimine should be as well.

Hugs to you and know youll do the very best for your treatment...

take care.

Roxanne


33 y/o - STAGE IV BONE METS - inital dx 2005 stage 2b er+/pr- her2 - 4.7 cm idc breast cancer grade 3.
Dx 6/5/2007, 4cm, Stage IV, Grade 3, 2/30 nodes, mets, ER+/PR-, HER2-
Log in to post a reply

Jul 3, 2007 11:42AM awjkej wrote:

Hi,

I did a search for lung mets and found this thread. I have posted here before but not for awhile.

My current status: Diagnosed in Fall of '04 with bone mets in my left hip and L5 pedicale on my spine. (original BC diagnosis was Jan '03) I also have a node in my chest just outside of my lung which indicates cancer when it shows up on the PET scan. I have been on Herceptin for alittle over 2 years, aromasin, and no chemo since July '07, zometa was every month for 2 years until Jan'07 and now I take it quarterly.

My most recent PET scan results showed my bone mets are still stable (over a year now!). My onc said that the node is growing and wants to put me on Tykerb to see if that helps. The node has never decreased from any treatment.

I also have wheezing when I breath and have had that for awhile. My onc has been "watching" the breathing issue and that is why he wants to put me on Tykerb.

Did anyone with lung mets have any symptoms like the wheezing, or were the lung mets diagnosed from a scan?

Also, I am little nervous about getting just Tykerb , but I know that my onc starts conservatively. I see him next on the 12th and will ask him all kinds of questions!

Thanks for listening!
Anne
www.faithhopecourage.com / Faith is the bird that feels the light when the dawn is still dark.--Rabindranath Tagore Dx 1/10/2003, IDC, Left, 2cm, Stage IIIB, Grade 3, 0/14 nodes, mets, ER+/PR+, HER2+ (FISH) Surgery 2/3/2003 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 3/27/2003 AC Targeted Therapy 10/1/2004 Herceptin (trastuzumab) Hormonal Therapy 12/1/2004 Arimidex (anastrozole) Chemotherapy 11/4/2005 Taxotere (docetaxel) Radiation Therapy 11/21/2005 Bone Hormonal Therapy 6/16/2006 Aromasin (exemestane) Targeted Therapy 8/9/2007 Tykerb (lapatinib) Chemotherapy 8/9/2007 Xeloda (capecitabine) Radiation Therapy 10/17/2007 Bone Chemotherapy 4/8/2008 Navelbine (vinorelbine) Radiation Therapy 11/10/2010 Lymph nodes
Log in to post a reply

Jul 3, 2007 12:00PM debstitchestoo wrote:

Hi Anne

I started having wheezing 6 months before my diagnosis. I had 2 xrays and a pulmonary function test that turned up nothing and yet I continued to wheeze badly (even whistling as I slept). My onc didn't like it when I first saw her....before the mets diagnosis and asked me to have my family doctor order a CT scan. The scan showed a 3mm mass in my lung & pleural effusion as well as mets to my liver & spine. I've been treated with femara and the wheezing went away. Get my new scan results tomorrow and hoping for stabilization or better.

Debbie
Dx 2/28/2007, IDC, 1cm, Stage IV, Grade 1, 0/8 nodes, ER+/PR+, HER2-
Log in to post a reply

Jul 3, 2007 12:14PM awjkej wrote:

Thanks Debbie,

I just got off the phone with oncologist and he said that the mass is now just under 3cm and he will put me on Tykerb and Xeloda when I see him next week and discontinue the herceptin all together. I am to miss my herceptin treatment on this Friday.

He said that they have seen good results with the Tykerb and Xeloda. And I know I have read this too. I just am freaking out about the lung involvement.

I actually was doing "okay" emotionally til he called, and now the initial same ole feelings of fear etc come rushing in, which I hate! I like to have a positive attitude but the change in treatment always slams me in the beginning.

Thanks for your response and sending you good thoughts and prayers for a good PET result!
Anne
www.faithhopecourage.com / Faith is the bird that feels the light when the dawn is still dark.--Rabindranath Tagore Dx 1/10/2003, IDC, Left, 2cm, Stage IIIB, Grade 3, 0/14 nodes, mets, ER+/PR+, HER2+ (FISH) Surgery 2/3/2003 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 3/27/2003 AC Targeted Therapy 10/1/2004 Herceptin (trastuzumab) Hormonal Therapy 12/1/2004 Arimidex (anastrozole) Chemotherapy 11/4/2005 Taxotere (docetaxel) Radiation Therapy 11/21/2005 Bone Hormonal Therapy 6/16/2006 Aromasin (exemestane) Targeted Therapy 8/9/2007 Tykerb (lapatinib) Chemotherapy 8/9/2007 Xeloda (capecitabine) Radiation Therapy 10/17/2007 Bone Chemotherapy 4/8/2008 Navelbine (vinorelbine) Radiation Therapy 11/10/2010 Lymph nodes
Log in to post a reply

Jul 3, 2007 12:20PM debstitchestoo wrote:

Hi Anne

Thanks for your prayers & thoughts. I'm taking all that I can get. I've heard good things about Tykerb and I'm sure it will put you in a stable position. I know it's hard to be positive all the time and maybe it's not even necessary. As long as we're committed to the fight....we'll survive! Hugs and prayers to you!

Debbie
Dx 2/28/2007, IDC, 1cm, Stage IV, Grade 1, 0/8 nodes, ER+/PR+, HER2-
Log in to post a reply

Jul 3, 2007 01:05PM LuAnnH wrote:

Tykerb is supposed to be having some amazing results along with xeloda. The only problem I am aware of is one girl having trouble getting the rx approved by insurance. There are only certain places that fill that rx right now. You might want to make sure your onc office staff is on top of this paperwork.

LuAnn
LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
Log in to post a reply

Jul 3, 2007 01:19PM awjkej wrote:

Thanks LuAnn,

I have faith in my onc's office and his case management nurse who has had to deal with this type of issue before. I always appreciate any and all advice...I have faith in this too, just hard when I haven't had to deal with the fear..I prob need a good cry to get it out of my system and move forward

Anne
www.faithhopecourage.com / Faith is the bird that feels the light when the dawn is still dark.--Rabindranath Tagore Dx 1/10/2003, IDC, Left, 2cm, Stage IIIB, Grade 3, 0/14 nodes, mets, ER+/PR+, HER2+ (FISH) Surgery 2/3/2003 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 3/27/2003 AC Targeted Therapy 10/1/2004 Herceptin (trastuzumab) Hormonal Therapy 12/1/2004 Arimidex (anastrozole) Chemotherapy 11/4/2005 Taxotere (docetaxel) Radiation Therapy 11/21/2005 Bone Hormonal Therapy 6/16/2006 Aromasin (exemestane) Targeted Therapy 8/9/2007 Tykerb (lapatinib) Chemotherapy 8/9/2007 Xeloda (capecitabine) Radiation Therapy 10/17/2007 Bone Chemotherapy 4/8/2008 Navelbine (vinorelbine) Radiation Therapy 11/10/2010 Lymph nodes
Log in to post a reply

Jul 3, 2007 03:41PM LuAnnH wrote:

Anne,

Go have your good cry, helps clean out those tear ducts. Just don't forget when you are done it is time to kick some cancer butt!

LuAnn
LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
Log in to post a reply

Jul 3, 2007 04:27PM awjkej wrote:

Thanks LuAnn, I will!

Anne
www.faithhopecourage.com / Faith is the bird that feels the light when the dawn is still dark.--Rabindranath Tagore Dx 1/10/2003, IDC, Left, 2cm, Stage IIIB, Grade 3, 0/14 nodes, mets, ER+/PR+, HER2+ (FISH) Surgery 2/3/2003 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 3/27/2003 AC Targeted Therapy 10/1/2004 Herceptin (trastuzumab) Hormonal Therapy 12/1/2004 Arimidex (anastrozole) Chemotherapy 11/4/2005 Taxotere (docetaxel) Radiation Therapy 11/21/2005 Bone Hormonal Therapy 6/16/2006 Aromasin (exemestane) Targeted Therapy 8/9/2007 Tykerb (lapatinib) Chemotherapy 8/9/2007 Xeloda (capecitabine) Radiation Therapy 10/17/2007 Bone Chemotherapy 4/8/2008 Navelbine (vinorelbine) Radiation Therapy 11/10/2010 Lymph nodes
Log in to post a reply

Jul 3, 2007 07:43PM JeanOneal wrote:

I was diagnosed with a tumor in my right lung last Sept (by Cscan). Just finished antibiotics for bronchitis and am having pain in my back over the right lung area. Have been on Xeloda for 6 months now and my tumor markers have gradually gone down!. The onc. is talking of radiation seeds for my lung but will talk about that at next appt.

I also have mets to my intestines, stomach, and lower spine (recently finished radiation for that)but am encouraged so by my tumor markers.
Keep looking up.
Log in to post a reply

Jul 4, 2007 08:42PM kathysugarland wrote:

Awjkej
Before I was diagnosed with lung mets I experienced a cough and sore throat for 4 months. I am a coach and I was not even able to blow my whistle. Breathing became a problem. I also experience a pain in my upper back when I went to bed. Bless you Awjkej
Log in to post a reply

Jul 5, 2007 05:10PM awjkej wrote:

Hi Kathy,

Having breathing problems is scarey for me, so I can only imagine how you felt! How are you doing now? What if any is your treatment?

Anne
www.faithhopecourage.com / Faith is the bird that feels the light when the dawn is still dark.--Rabindranath Tagore Dx 1/10/2003, IDC, Left, 2cm, Stage IIIB, Grade 3, 0/14 nodes, mets, ER+/PR+, HER2+ (FISH) Surgery 2/3/2003 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 3/27/2003 AC Targeted Therapy 10/1/2004 Herceptin (trastuzumab) Hormonal Therapy 12/1/2004 Arimidex (anastrozole) Chemotherapy 11/4/2005 Taxotere (docetaxel) Radiation Therapy 11/21/2005 Bone Hormonal Therapy 6/16/2006 Aromasin (exemestane) Targeted Therapy 8/9/2007 Tykerb (lapatinib) Chemotherapy 8/9/2007 Xeloda (capecitabine) Radiation Therapy 10/17/2007 Bone Chemotherapy 4/8/2008 Navelbine (vinorelbine) Radiation Therapy 11/10/2010 Lymph nodes
Log in to post a reply

Aug 16, 2007 09:43AM Ravencaine1 wrote:

hi there, i had a cough for 2 weeks, amd after that, i got laryngitis, had it for also 2 weeks, than i had trouble breathin, shortness of breath, than, my heart started racing, to 215 beats per minute, went to emergency, so they coulld slow my heart down, and they sent me home, still i had shortness of breath, they did not do a chest x-ray or ct scan done, and again 5 days later, i had to go back to emergency, cause my heart was racing, at 208 beats per minute, and they gave drugs to slow down the heart, but they did not do any chest-xrays or ct scan, and sent me home, than i went to my family doctor and he prescribed some biaxin for my lung infection, he told me to come back 10 days later, so went to doctor, and i told him i was having troubles breathin, shortness of breath, and he said i was havin a mild heart attack, what quack my doc is, so he sent me to emergency, and they did a chest xray, to find out that my left lung was full of fluid, so the next day the put a chest tube in my back to drain the fluid, they drained almost 4 litres outta my left lung, and, they did a ct scan on my chest, and found out i have tumor in my left lung, but my lung also collasped too, from all the fuild around my left lung, and it hasnt really fully expanded yet,also my left eye was droopy for a month, cause of all the fluid that was in my lung, i guess it pinched a nerve, and it also paralyzed part of my a nerve in my larynx box, which will subside in awhile, will have laryngitis for a awhile, i c my onc next week, to c what they can do for me, had a bone scan done and it came back neg, had a bronchile scoping done, to find out if my airways were blocked, and i guess he did a biospy, and put some liquid in there, and my lung re-expanded a bit, i was in the hospital for a week, and discharge for home. i was dx with bc march 2004 idc - er/pr- and HER2 pos had 27 outta 29 nodes pos did 6 cycles of FEC and 30 rads, and did a year of herceptin finished sept 2006, and in may 2007, was still NED go figure.

Donna aka Ravencaine1
Log in to post a reply

Aug 17, 2007 04:39AM boobbuster wrote:

Donna-
I'm so sorry to hear that you've had a rough time of it and an even rougher time getting the correct dx. We find that alot of bc patients are routinely misdiagnosed with mets. Now that they know you need to be treated, you'll bounce back. The Mets Sisterhood here is strong and we're supportive of each other in ways that other women with breast cancer can't offer you. The struggles of fighting this disease are not just medically. So when ever you need to vent, we're here for you and are ready to support you. God is able, Stephanie

p.s. Jubelli, where are you? We're wondering how your treatments are going in Washington.

Page 1 of 1 (30 results)