Mets to spine and right lung after 7 years of original diagnosis

Lynne

After 7 years of clear mammograms (including one a few weeks ago), I was diagnosed with mets in my spine and lung. My  back was hurting me about a month ago, and my pcp sent me for xrays. They found a compression fracture in T9. They asked if I had an accident or fallen, and I said no. 2 days later I was sent for an MRI. It showed tumors on most of my thoracic vertabrae as well as the compression fracture. They sent me for CT scans of my chest and abdomen as well as a Bone Scan, and it also showed a mass in my right lung and smaller nodules also in the lung, as well as mets in the lymph nodes in front of the spine. I also have a small amount of fluid at the bottom of my right lung. I had a Kyphoplasty for my compression fracture 2 weeks ago, which took care of most of the back pain, and they also did a bone biopsy at the same time. It came back with breast cancer cells.

How does this happen without having tumors in my breasts? I originally had a lumpectomy, and sentinal node biopsy (which showed no cancer cells in the lymph nodes), I was 43 at the time. I had the Oncotype DX test on my tumor to see  the chances of recurrence. It came back 8% if I did not have chemo, 6% if I did. I chose not to have chemo on the advice of my surgeon and my husband and my oncologist agreed. I had 6 weeks of radiation treatments. I also had a hysterectomy and oopherectomy to remove those estrogen ovaries since I was premenopausal and estrogen positive. I started the aromotase inhibitors, and after 3 1/2 years and trying all of them with awful side effects, I stopped (since my ovaries were gone anyhow). I had an MRI of my spine 3 1/2 years ago for lower back pain, and it showed no tumors then. 

 I just can't believe I have to go through this again!

Tomorrow I meet with my oncologist to see what the treatment options are. I am also meeting with a breast specialist from Boston (Dana Farber) the following Monday for a second opinion.

I had an aunt pass away a year ago from breast cancer mets, at age 61. She lasted 2 1/2 years after being diagnosed. She had chemo every 2 weeks during that time. I know everyone is different, but  I don't want to only last 2 1/2 years and be sick all the time! I have 4 kids (youngest is 17) and 2 grandkids and another due in Dec. My youngest is graduating high school next year. 

Cancer just SUCKS!

mamabr

I'm sorry for you.  I will send prayers your way.  I have to decide this week whether to go through chemo.  All of this is so hard.

AMP47

Hi Lynee 

I PI you. But want to say my prayers will be headed your way for a good prognois.  I read alot of studies that show women surviving much longer than 2 years and live with their recurrence like  a chronic disease.  Easy for me to type this message, I haven't had a recurrence.  But, I am sure I would feel the same as you do.  And, hopefully your treatment will give you many years of life with your family.  

Hugs to you and your family.  AMP47 

Lauriesh

I am sorry it came back.

How does this happen? Cancer cells can travel through blood also, not just the lymph system. So, before your tumor was removed 7 years ago, cancer cells escaped the breast and traveled to other areas of your body.



I also struggled with this as my cancer returned 5 years after diagnosis, and I was er-, so I hadn't been on any treatment, so it seems amazing that the cancer cells stay in our body that long and then all of a sudden start growing.



It's hard when you have kids. I have 3, the youngest is 10. Women are living many years with mets. I will be 2 years next week, and I can tell you I plan on being here for many more.



It does get better once you get your plan and you start treatment.



Good luck



Laurie

Lynne

Thank you everyone for your comments, thoughts, and prayers. I appreciate it!

pennylane

Lynne I am so sorry this has happened...I feel a special closeness to all the members of the 2005 dx club...It is absolutely a shock to read that this has happened to you after a very early stage dx...I read of many women finding a way to live and work and enjoy life while being treated for mets..You are estrogen positive and there are so many weapons to help you besides chemo...I take this support group business very seriously and your troubling news, I'm sure, has deeply touched all the members who have read this post...I have to think our positive thoughts and prayers will help you find your way through many, many years to come....P.

Lynne

Thank you Penny. I got my second opinion yesterday. It came back with the first choice of treatment the same as my oncologist. Faslodex (I hope I spelt that correctly), an anti estrogen injection. I will get it for every 2 weeks for the first 2 doses, then once a month. After 3 months, the will check on the tumors in my lung to see if it is working. I'm seeing my oncologist again tomorrow. I'm not sure if she'll start treatment tomorrow or not. The Boston oncologist yesterday, was suprised they didn't do 2 weeks of radiation on my back following my kyphoplasty. That's what the do there apparently. They radiate 2-3 vertabrae above and below the compression fracture to help with the pain (my back still hurts, but not as bad). We'll see what the decision is tomorrow. Wish me luck!

Lynne

Lynne

I get my first Faslodex injection and Zometa infusion on Friday. Hopefully, I won't get too many side effects. I am also have appointments set up with a radiation dr for the vertabrae and a radiology specialist to drain the fluid in my lung. She gave a perscription for steriods to try to help my back pain that I keep having too. Hopefully, everything works out ok. I'm keeping my fingers crossed.

Lynne

bevin

Dear Lynn- Just saw this thread and I'm sorry about your recurrence and mets. Praying for strength for you.

Sanibelblueyezz

Sorry to hear this. Do you have a treatment plan set? I have mets to liver & lungs & am on chemo. Anytime you want to talk I'm here for you. Hugs & prayers Marilyn

Sanibelblueyezz

In 2004 I had a lumpectomy & sentinel node biopsy which came back negative. I had 5 wks of rads only. Never saw an onc never on tomoxafin. They just sent me home saying it was gone. 4 yrs. later It showed up in a lump in my neck in the lymph glands. Now I have mets in my lung, liver & lymph system. I am still here in 2,012, now on chemo but going strong. Good luck with your treatment. Sorry you have to go thru this journey. Marilyn

hrf

Lynne, so sorry to learn of this. Unfortunately, this disease does not follow any rules. I hope your tx plan is in place now and that you have many, many more years with your family. 

AMP47

Marilyn - did they do a biopsy on your tumor as well as your lymph node with both being negative for caner?  Did they stage your tumor or determine size, prognostic factors, etc ? Surprising to read they just sent you home.  

Sanibelblueyezz

Lynn, my first cancer was stage 0 so they only did radiation. They said I needed nothing else. There were 2 tumors measuring 6 mm together. There is no tumor sizing now because it is so widespread. They started me on new chemo & after 3 treatments what little hair I have is falling out again.

SyrMom

Lynne, so sorry to learn of your recurrence and now stage IV dx.  It might be helpful to read the faslodex thread.  Some good tips.  I've just begun that tx following approx. 18 mo on femara.  Good luck ...

HLB

Hi Lynne, I hope you are feeling a little better now that you have your tx plan. I am going through the samw thing, after 7 years just dx with spine mets. I really thought I was done with cancer and we had a little celebration every year. So much for that. I too am trying not to worry about how long I will last...I'm sticking with the good stories of the people who live 20+ yrs just treating their mets chronically. Its taking me a little longer than I want to get into fighting mode. I'm still a little shocked and depressed. Good luck to you and I hope you end up stabilized very soon!

Irocjuju

Lynne,

I'm glad I found your post.  I'm sorry you had to post it though.   I was diagnosed in 11/2004 with stage 2, triple neg IDC at age 27 two months after giving birth to my 2nd child.  I went through lumpectomy, chemo and radiation.  In 9/2005 I completed all treatment and was declared cancer free.  So, I'm also about 7-8 out from diagnosis.  I've only been able to get mammos and ultrasounds yearly due to low income and lack of insurance.  I am currently dealing with a "cyst" in my "good" breast but am really concerned with possible mets.  I have had a bad back for years, even since before cancer.  About a year or 2 ago, it went out again and I had an MRI.  Doctor said no signs of cancer or tumors, just deginerative and bulging discs and some arthritis (I'm only 35 now ).  However, since I have had no cancer related scans or bloodwork in so many years, my mind is really thinking about what could be going on in the rest of my body.  Luckily, my current breast surgeon is in agreement that I need to get some more thorough scans done.  I am going to have an excisional biopsy sometime soon and if that comes back malignant I'm sure I'll get scan anyways.  If it doesn't, hopefully I'll get scans soon. 

Attitude and faith have SO much to do with survival.  So, please keep your head up and know that I'm praying for you! Blessings to you!