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14 year survivor - bad PET scan rsults

kmikola2
Posts: 29
Joined: Feb 2012

Unfortunately, results from PET scan aren't good. There are multiple spots on my bones...mets. I am soooo sad. Dr wants to do a bone biopsy to see if this is the original BC, or another type. He said it is very rare for it to come back like this after almost 15 years, but obviously it can happen.

The "good" news, is that it doesn't appear to be in any of my organs and my bloodwork is perfect. He says that if the cancer is ER+, I would take an oral medication and a monthly shot...God willing, I could go on like that for years.

If it isn't ER+, they would do chemo. Does all this sound consistent with your experience?

Kay :(

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Tux
Posts: 541
Joined: Aug 2009

Sorry to hear that your scan was not good. I have not had any experience in this area of BC, so I cannot offer any further info. However, I want you to know that I am thinking of you and hope that you get the best medical care possible. (((Hugs)))

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carkris
Posts: 4523
Joined: Aug 2009

sorry the pet wasnt good. glad it is not in any organs. Cypress cynthia had hers recur in the bones after a long time as well. You might ask her what she is on as it is working well. HUgs!

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DianeBC
Posts: 3888
Joined: Jun 2009

I am so sorry Kay to read the results of your PET scan. I am sending you positive thoughts and hugs.

mom62
Posts: 600
Joined: Mar 2004

Hi,

I have mets too. I do hormone therapy too. Arimidex and every three months Lupron shot. Mine is original from BC. I had recurrance and had most of sternum and 3 ribs removed as it had grown into the bones. I did chemo after surgery and am now on the hormone therapy for mets that grew while I was given chemo so I don't think chemo helped me at all.

Terry

survivorbc09
Posts: 4378
Joined: Jun 2009

I am so sorry Kay that that your scan turned out like this. My prayers to you.

Hugs, Jan

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Ann2800103
Posts: 31
Joined: Oct 2010

How is the Lupron doing for you? I have been on it almost three years. Seems to be doing well. on Femara also..... How are your side affects? I am feeling pretty good.

Huggs
Annie

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Ann2800103
Posts: 31
Joined: Oct 2010

How is the Lupron doing for you? I have been on it almost three years. Seems to be doing well. on Femara also..... How are your side affects? I am feeling pretty good.

Huggs
Annie

Ann2800103's picture
Ann2800103
Posts: 31
Joined: Oct 2010

How is the Lupron doing for you? I have been on it almost three years. Seems to be doing well. on Femara also..... How are your side affects? I am feeling pretty good.

Huggs
Annie

Ann2800103's picture
Ann2800103
Posts: 31
Joined: Oct 2010

How is the Lupron doing for you? I have been on it almost three years. Seems to be doing well. on Femara also..... How are your side affects? I am feeling pretty good.

Huggs
Annie

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SIROD
Posts: 2133
Joined: Jun 2010

Hi Kay,

Sorry that it's back. I had a number of years between 2nd and 3rd recurrence, so I had a PET scan after tumors and effusion was found on the CT scan (2008) and then a biopsy (VATS, as it returned in the lungs and lining). I went on hormonal therapy as I am very ER+ and mine has been the same since it began back in 1994.

There is no need to do chemo as hormonal therapies for those who are ER+ or PR+ is the same.

Wishing you well on this new phase of the journey,

Best,

Doris

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Noel
Posts: 3101
Joined: Apr 2009

I'm so sorry Kay about your test results. I will be praying for you and I'm sending you a big hug today!

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pinkkari09
Posts: 878
Joined: Sep 2009

Hi Kay, I'm so sorry for your bad scan, it's not what we want to hear but when we do, we have this wonderful place to go and get an enormous amount of support from thousands of caring wonderful people. I have triple negative cancer, I was diagnosed stage IIIC in 2009, after multiple chemos, surgeries, and radiation, I put it into remission for 7 months, then it returned in my bones. I'm currently battling it as it is covering my entire spine, hips, femurs, shoulders, lymph nodes, etc...after failing three chemos, we have found one that has stabilized my progression. I'm content with stable beings it was growing through all the other meds. I pray you'll come here and get the support you'll so want and need. In addition, I pray the doctors find a good regimen to put this ugly beast in remission for you one more time. Big cyber hugs,
Kari

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missrenee
Posts: 2137
Joined: Apr 2010

I was just given the news (about 6 weeks ago) that my cancer has spread into my bones. I had Stage 3C ER, PR+ and HER2- diagnosed in Dec. '09. I had lumpectomy, 6 rounds of TAC and 33 rads. I had been on Arimidex for almost 18 months when the cancer returned in my bones. I couldn't believe it. I had pain in one vertebra. I had a bone scan, CT, MRI and PET done. The MRI showed diffuse mets in the spine, pelvis. The PET only showed the mets in T-12 of my spine. They then did a bone biopsy of T-12--the vertebra that hurt and it came back same as the breast cancer.

I have just started Faslodex injections (right now every other week and then once a month) which are supposed to suppress the hormones, and a monthly infusion of Zometa for bone strengthening. This really threw me for a loop. Everything has changed.

Please PM me if you'd like to talk more. I'm in the same boat as you, just a little sooner.

Also, don't worry about the bone biopsy. It sounded really awful to me, but I was asleep and recovery was really uneventful with almost no pain.

Hugs, Renee

kmikola2
Posts: 29
Joined: Feb 2012

If my bone biopsy shows up as ER+, my doctor is suggesting Aromasin and monthly XGEVA shots. He says he's had women on this regemine for 10+ years. But this just doesn't sound like enough. Isn't there more aggressive treatment?

If its ER-, he says chemo. Because I only had AC 14 years ago, He says there are lots that we can try.

I had a friend whose sister did some sort of bone marrow procedure after bone mets 18 years ago, and is still here. Is this a possibility? I'm thinking of asking for a second opinion.

I know I am getting way ahead of myself, but I'm trying to gather information.

Thanks for any input,

Kay

squantum
Posts: 5
Joined: Mar 2012

Hi Kay,

So sorry to hear your bad news. I too was just diagnosed with metastatic bone cancer. It is such a shock to hear this news after being cancer free for so long. My original BC (ER+) was 11/03-chemo(ACT),radiation, and Tamoxifen for 5 years; 2nd BC was 11/11 and bone metastatic cancer in 12/11. My bone cancer is throughout my skeleton (skull, ribs, spine, all areas of the hips, & femur). Please check with your doctor to see if you will be getting an IV drip for the bone biopsy. Not all patients receive this. I had to almost cancel the appointment because they were only going to give me an anesthetic shot for this. I insisted and they finally gave in. Not sure if it is because of insurance or not, but you should be insistent on an IV drip so that you are comfortable. There is no need for any kind of pain these days, you just need to ask.

I am receiving Zometa every 4 weeks and Arimidix daily. My doctor tells me that this is the only treatment for me. There are no clinic trials at the moment for this type of cancer. I did seek another opinion but they suggested the same treatment. Although, they will radiate a specific area to reduce pain if needed. I'm going for another CT scan in April to see whether or not the meds are working.

I wish you the best and try to stay positive...
Karen

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Texasgirl10
Posts: 668
Joined: Nov 2010

Im so sorry to hear that your pet scan results are bad. I will be praying for you.

Hugs,

Dawne

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Alexis F
Posts: 3604
Joined: May 2009

I'm very sorry that your PET scan results were not good. You're in my prayers.

Hugs,

Lex

kmikola2
Posts: 29
Joined: Feb 2012

Karen,

Thanks for the information. Yes, it is a shock to say the least...I truly thought I was done with this. My onc said he did too, and it is very rare for this to happen. I just think getting a second opinion is probably just a smart thing to do.

The nurse from the hospital where I'm having the bone biopsy has called and said I would be getting an IV.

I am trying to stay positive, but just in shock. I hope things go well for your scan and the meds are working.

Thanks for everything.

Kay

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Kylez
Posts: 3765
Joined: May 2009

Please stay positive Kay and know that we are here supporting you.

Praying,

Kylez

kmikola2
Posts: 29
Joined: Feb 2012

Karen,

Thanks for the information. Yes, it is a shock to say the least...I truly thought I was done with this. My onc said he did too, and it is very rare for this to happen. I just think getting a second opinion is probably just a smart thing to do.

The nurse from the hospital where I'm having the bone biopsy has called and said I would be getting an IV.

I am trying to stay positive, but just in shock. I hope things go well for your scan and the meds are working.

Thanks for everything.

Kay

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jnl
Posts: 3873
Joined: May 2009

Kay, sending lots of hope, support, encouragement and some really big hugs!

Leeza

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Oh Kay, I am very sorry about your results. I will be praying for you.

Lots of hugs,

Debby

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DebbyM
Posts: 3294
Joined: Oct 2009

When is your bone biopsy scheduled Kay?

kmikola2
Posts: 29
Joined: Feb 2012

Thursday is the day...sounds like just SO much fun. I really am trying to take it one step at a time...
Any helpful suggestions?

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Ritzy
Posts: 4384
Joined: Aug 2009

Like the rest of the pink sisters Kay, I am so sorry about your results. This board is amazing and I hope that it can help you to handle this in some way, even if it is just to vent. We're always here for you Kay!

Sue :{

CypressCynthia's picture
CypressCynthia
Posts: 3963
Joined: Oct 2009

I am so very sorry and saddened to hear your news. I had been 22 years when I finally got my mets diagnosis, so it is indeed possible for the blasted disease to hide out that long.

My breast surgeon, who is also a family friend, told me that, for some people, breast cancer is much like a chronic disease that is incurable, but treatable. He told me that it is quite possible that I could die from something other than breast cancer. I am planning on it!

If your tumor is ER+, you will probably be on an oral aromatase inhibitor (either femara, arimidex or aromasin). You will also be on a bisphosphonate (xgeva or zometa). Both drugs are very important in fighting bone mets.

I know much less about other types of cancer because mine has remained ER+. Let us know what your biopsy shows.

I will be praying for you Kay. Big (((hugs))). And feel free to pm me if you want to!

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VickiSam
Posts: 8255
Joined: Aug 2009

good information from our Sisters in PINK -- living with a recurrence, or as some
stated a "chronic disease", also known as breast cancer.

Please keep us posted -- as we are a family, united by the will to Survivor the
beast.

Strength, Courage and HOPE for a Cure.

Vicki Sam

jnl's picture
jnl
Posts: 3873
Joined: May 2009

How are you doing Kay? Thinking of you and sending prayers.

Hugs, Leeza

kmikola2
Posts: 29
Joined: Feb 2012

Plan is bone biopsy Thursday, should get results by early next week (which the doctor assured me he would call me with if he gets it before our appointment on Wednesday); based on the results, develop a plan. Praying for ER+ (my original cancer was VERY ER+)...I also decided to get a second opinion from a friends oncologist, just to hear another opinion. I don't expect a different answer, just want to be sure I covered my bases.

I think once I develop a plan, I'll feel better. All this uncertainty is brutal.

I really am taking it one day at a time...very emotional one minute, strong the next. The doctor did prescribe some xanax, but I'm thinking of asking for some anti-depressants. Don't think I can live like this.

I'll keep you informed...Thanks for all the support!

survivorbc09
Posts: 4378
Joined: Jun 2009

We will continue to pray for you Kay. Good luck Thursday.

Hugs, Jan

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

Good luck with the bone biopsy. Please post your results when you can. And, I like your getting a 2nd opinion!

Hoping the xanax will help you thru this Kay.

Sue :)

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laughs_a_lot
Posts: 1368
Joined: Mar 2011

Bummer that it is back. If it turns out to be the bc instead of some other form of cancer then it has taken a heck of a long time to return. It might mean you have a good many years ahead of you despite it's return. Will put you on the prayer list.

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Praying for you Kay!

kmikola2
Posts: 29
Joined: Feb 2012

Actually, the doctor did suggest that if it is the same cancer, the fact that it has been so long is a good sign. I'll take anything I can get.

Thanks! Kay

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Be sure and keep us updated Kay! Hugs!

kmikola2
Posts: 29
Joined: Feb 2012

Had the bone biopsy today. It actually went very well...doctor and nurses were very nice and caring. A little sore now, but nothing horrible. They said 5 days to find out the results, but my doctor said more like 3. We'll see. Pray that the results are good (I guess relatively good).

Thanks for all the support...

Kay

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

So glad your bone biopsy is done now. I hope the soreness goes away quickly. Praying for good results Kay!

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

I will be praying for you Kay.

Hugs, Diane

kmikola2
Posts: 29
Joined: Feb 2012

Thanks everybody for the prayers and support...this limbo is horrible...

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

I can't imagine how you feel Kay. The limbo is horrible, I know. I am praying for you!

Hugs, Angie

Ann2800103's picture
Ann2800103
Posts: 31
Joined: Oct 2010

Hi Had breast cancer in 1998 December 10. Had all chemo and radiation and Tamoxifen. After all those years my hip started to hurt. I had a scan and I was pending fracture. Ithad eaten almost through the hip and 3/4 down my femur.
Had hip replaced no chemo this time radiation three years ago. I do not even have a limp
and feeling great@@ Because my cancer lives on estrogen I am taking Lupron shots every six weeks hardly any side affects to speak of and I walk without a limp (: I was very sad also but fought like you know what said no chemo just rad because organs are fine.
Keep in touch or you can send me emails on here. I am here foryou if you have any questions.
I feel better now then I have in years.....I am on heavy Vit D. Make sure your Vit D stays up.
Blessings to you my dear...Its not always what you think...I almost gave up. Now I'm keeping my grand daughter I am disabled because once it comes back they told me not to work
and they approved disability right away. I worked since I was 14 so my disability is enough for me to live on. They felt stress of working would not be good.
Huggs Annie

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Thanks Kay for the update as we have all been watching for it. Your doctor sounds like he is ready to help you fight this with his plan. Good luck with your appointment with the 2nd doctor.

Hugs, Megan

Ann2800103's picture
Ann2800103
Posts: 31
Joined: Oct 2010

Hi Had breast cancer in 1998 December 10. Had all chemo and radiation and Tamoxifen. After all those years my hip started to hurt. I had a scan and I was pending fracture. Ithad eaten almost through the hip and 3/4 down my femur.
Had hip replaced no chemo this time radiation three years ago. I do not even have a limp
and feeling great@@ Because my cancer lives on estrogen I am taking Lupron shots every six weeks hardly any side affects to speak of and I walk without a limp (: I was very sad also but fought like you know what said no chemo just rad because organs are fine.
Keep in touch or you can send me emails on here. I am here foryou if you have any questions.
I feel better now then I have in years.....I am on heavy Vit D. Make sure your Vit D stays up.
Blessings to you my dear...Its not always what you think...I almost gave up. Now I'm keeping my grand daughter I am disabled because once it comes back they told me not to work
and they approved disability right away. I worked since I was 14 so my disability is enough for me to live on. They felt stress of working would not be good.
Huggs Annie

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Checking to see if you've heard any news yet Kay. Prayers and big hugs!

Hugs,

Debby

kmikola2
Posts: 29
Joined: Feb 2012

Appointment scheduled for Wednesday, but he assured me he would call if he got the results before. Freak out every time I think of it.

Hugs right back,

Kay

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

I know how easy it is to freak out about test results Kay. I am praying for you and please post when you hear something.

Sue :)

kmikola2
Posts: 29
Joined: Feb 2012

Recurrent breast cancer with bone mets....ER 90%+/PR 20% .../HER results not in yet....so the plan is Faslodex 500 mg for two weeks, then monthly/500 mg monthly Xgeva 120mg sub q. Will start the first shots next week.

If the HER comes back positive, he will also administer HER...

So, as horrible as this whole thing is, I'm glad I don't have to do traditional "chemo" again. He says we'll do another PET scan in 6 months...could do it sooner, but while bone is healing, he said everything will "light up" as the bone heals. Get a more accurate reading in 6 months. He said we will go on this indefinitely, as long as it works, which in his opinion can be years.

Glad there is a plan in place. I am going to a different doctor tomorrow to get a different opinion.

Thanks for all the prayers and positive thoughts.

I'll let you know what doctor #2 says.

Hugs,

Kay

kmikola2
Posts: 29
Joined: Feb 2012

Went and saw Dr #2 today...he was actually VERY good. He recommended the same treatment plan that Dr #1 suggested. This made me feel better. He said he expected me to do very well, and that I had a good prognosis. Have every hope to be around MANY years....keep praying! Hugs!

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

Excellent news then Kay! Wishing you the best with your treatment and please keep us updated.

Hugs and prayers to you,

Noel

kmikola2
Posts: 29
Joined: Feb 2012

Recurrent breast cancer with bone mets....ER 90%+/PR 20% .../HER results not in yet....so the plan is Faslodex 500 mg for two weeks, then monthly/500 mg monthly Xgeva 120mg sub q. Will start the first shots next week.

If the HER comes back positive, he will also administer HER...

So, as horrible as this whole thing is, I'm glad I don't have to do traditional "chemo" again. He says we'll do another PET scan in 6 months...could do it sooner, but while bone is healing, he said everything will "light up" as the bone heals. Get a more accurate reading in 6 months. He said we will go on this indefinitely, as long as it works, which in his opinion can be years.

Glad there is a plan in place. I am going to a different doctor tomorrow to get a different opinion.

Thanks for all the prayers and positive thoughts.

I'll let you know what doctor #2 says.

Hugs,

Kay

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