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Interpreting bone scan/PET/CT

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turtle View Drop Down
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    Posted: Feb 05 2012 at 11:34am
I found a lump on 12/31/11, which subsequently DID NOT appear on the diagnostic mammo my GYN ordered, but was suspicious enough upon ultrasound to warrant a biopsy. Biopsy determined TNBC, grade 3 (8/9) on a 1.5 cm mass. I elected to have mastectomy with sentinel node biopsy, rather than 2 separate surgeries. Sentinel node was negative, but received results of imaging done just prior to surgery: Bone scan said no evidence of osseous malignancy, but a suspicious hot spot was found on 5th rib where it attaches to vertebra. Also, PET/CT revealed suspicious area on liver. Will be going in for more imaging on these 2 areas to see what they might be. But I want to be realistic, given my diagnosis of TNBC, aren't these highly likely to be early metastatic sites? If so, do i just proceed with chemo, watch and wait?
DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2012 at 12:39pm
Hi Turtle,

Welcome, but sorry you have a reason to be here.  With TNBC, chemo is almost always recommended as it's our only adjuvant treatment available.  While you have some suspicious areas on your scans, without further imaging or biopsies, it's difficult to tell if they are false positives or malignancies.  Knowing if it is mets might change treatment choices.  For example, some clinical trials are only available for metastatic breast cancer and some exclude mbc.  Please keep us posted on your pathology and further imaging results.  Please feel free to ask questions or just vent.  We will help you in your journey.  

Donna

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2012 at 12:40pm
Turtle,

Where are you going for treatment?  Dr. Lisa Carey and UNC/Chapel Hill is very knowledgeable in TNBC.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Lee21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2012 at 12:41pm
TNBC is supposed to metastasize to "visceral" sites, including liver, lung, brain and less so to bone, compared with other types of BC.

For information from the medical literature, I refer you to NEW MEMBERS > OPEN ACCESS where you will see various articles, web links and podcasts listed.

I am wondering why your oncology team did a bone/PET scan since it sounds like you have stage I disease?  Did you have symptoms?  Are you being treated at Duke?

PET scan looks at uptake of [18F]fluoro-deoxyglucose and areas where there is a high metabolic rate will take up the tracer since glucose is required for energy conversion.  In other words, it is not specific for metastases but certainly tumor cells could be highly metabolically active, but so are wound sites, areas of inflammation, etc.

If you have dense breasts, I am not surprised that the diagnostic mammogram was unrevealing (my situation).

I know it is very unsettling and scary -- but I would wait until your other results come back first. Even in the absence of mets, chemo is the only systemic therapy available in TNBC and micromets are not uncommon (which are not necessarily picked up by PET scanning, a limitation of the technology).
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SandraB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2012 at 3:21pm
Lee, aren't bone and CT scans routinely done in the US as part of staging for early stage disease? I was sent for both the same week we found the lump  and just a couple of days after biopsy. I assumed it was routine practice. 

Sorry to butt in with my random question Turtle. I hope that your suspicious spots are benign. Please keep us posted on results and your treatment plan. 

Best to you,
Sandra
Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes.
Lumpectomy & ALND 10/2011
FEC-D 11/11 - 03/12
Radiation finished 05/2012
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turtle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote turtle Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2012 at 3:33pm
Thanks for the articulate & fast responses. I am being treated at Duke, where I work, and am so far pleased with my team. Kim Blackwell is my onc, and although I have had limited interaction with her thus far, I am satisfied with my care. I have been feeling a little achy for more than a month now, but thought I may have just gotten a bit of something from my kids (9 & 10 yrs), until I found the lump. I let my onc know about this and my huge concern about existing mets (since they are the real killer), so perhaps that's why she ordered the scans. In any case, I'm glad she did, but again, will be undergoing more detailed imaging to see what's up with the liver & rib.

I will also add that the original radiologist who did my ultrasound guided biopsy, and alerted me that I probably had cancer, has informed me that it is not uncommon that the presence of a tumor is not detected on mammograms in women with dense breasts such as mine. This is not news to the women on this site, but I do feel is missing from the general literature women receive at their OB/GYN. As the debate among the medical profession as to the necessity of self-breast exams is ongoing, I would like to weigh in on this issue and add that it is of particular importance for women with small breasts, or dense breasts or both. I think that there are a lot of myths that still need to be dispelled, even among reasonably well-educated and well-informed folks.

Thanks again for the support, and I will continue to post my progress. For now, I'm not missing my  boob at all, but will miss my long hair. BUT...I'd rather have a long life than long hair!
DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery
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Lee21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2012 at 3:34pm
Not at the cancer center that I am being treated, suspect it varies from institution to institution.

SandraB -- where is vic which you listed as your location?

Brings up a good question -- how many of us here on the forum were sent for metastatic workup at initial diagnosis?
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SandraB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2012 at 3:58pm
Lee, I am in Victoria, Australia. I should make that clearer in my profile. 

I was sent for all my scans as soon as we knew I had breast cancer. I assumed it was standard practice to rule out metastatic disease and to make sure the right treatment plan was given at the outset. They were ordered by my breast surgeon prior to surgery - and surgery was my primary treatment, btw, I didn't do neoadjuvant.

Turtle, my lump, all 2.5cm of it,  never showed up on a mammogram. If it wasn't palpable, I would have been sent home and told all was well. So yes, it seems mammograms in women with dense breast tissue can be very inaccurate and that is a real worry. And as for the hair - it grows back :-) I am rocking the patchy, grey look right now!!

Sandra
Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes.
Lumpectomy & ALND 10/2011
FEC-D 11/11 - 03/12
Radiation finished 05/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2012 at 4:03pm
Dear turtle,

the ‘standard of care’ at most major cancer centers for women at high-risk, especially those with dense breasts, is a Breast MRI, often done on a rotating basis with a mammogram. I believe that economics is the main reason women are not told about the superiority of MRs (despite too many false positives) in finding 
breast cancer at an early Stage.

I think Duke is an excellent facility but as Donna mentioned you might want to get a second opinion at UNC. Dr. Lisa Carey and Carey Anders are excellent and if you are able/willing to travel and have good insurance coverage I think MD Anderson Cancer Center is another good resource.

I am a great believer is second opinions and most excellent oncologists, from my experience, welcome them.

I wish you luck on this arduous journey..

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Lee21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2012 at 6:01pm
I posted a couple of articles on dense breasts in NEW MEMBERS > OPEN ACCESS.

Regarding metastatic workup, my take is that with all radiographic modalities there are sensitivity and specificity issues. What the onc team doesn't want to have happen is to chase down a variety of "findings" on these scans that may be red herrings. So in the absence of symptoms or abnormal lab tests or a large primary/positive nodes, they don't want to go down the proverbial garden path. For TNBC you need chemo even for early stage. I don't know if knowing that a patient presents with metastatic disease in the absence of prior treatment, whether the initial chemo regimen will be any different but obviously the team will be monitoring local and distant sites.   There are investigational drugs being tested for metastatic BC and having stage IV BC may make the onc team more inclined to recommend such a path to begin with.

I totally agree with Steve regarding getting a second opinion -- I traveled from Michigan to UCSF for one and am glad that I did it -- it reinforced my initial inclination to undergo neoadjuvant therapy as opposed to the route that was originally recommended to me (I posted an article in OPEN ACCESS a while back about second opinions -- pg2 or 3).
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2012 at 8:07pm
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Turtle,

Recent studies have indicated that dense breasts have a higher risk of breast cancer.  I started a poll and it appears that many of us diagnosed had dense breasts.  

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2012 at 10:07pm
Lee:
 
In answer to your question regarding testing, my BS insists on a breast MRI prior to her doing any surgery, and my onc always does full body CT and full body bone scan prior to the start of chemo, no matter what your stage.  This definitely seems to be the standard in my area as all the other breast cancer women I have met since my diagnose also had the same scans.  Some had PET scan and not CT, but my insurance would not do the PET only the CT.
 
Turtle:  I wish you all the best, and please know that we will be here for you anytime - 24/7.
 
Linda


Edited by LRM216 - Feb 05 2012 at 10:08pm
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Wade Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2012 at 10:45pm
Hi Lee,

Kerri had a CT scan of her chest , abdomen and pelvis, as well as bone scan set up within a week of the initial diagnosis.

Wade 
Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; 08/07/2015 NED!

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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2012 at 10:58pm
I had only a breast MRI. We were told essentially that there was nothing more to be gained by doing further scans.

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2012 at 11:02pm
I did not have any scans at diagnosis--only MRI and MRI-guided biopsy.  I discussed it with my oncologist at the time--he felt that the benefits did not outweigh the risks, but left the final decision up to me.  I had a bone scan about 6 months after my treatment ended because I complained of aches and pains. 
 
I do feel strongly that women should be informed if they have dense breasts.  Some states, I understand, have made that into law.  I only found out that I had dense breasts when I got copies of past mammograms after I was diagnosed.
 
Charlene


Edited by Charlene - Feb 05 2012 at 11:21pm
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Wade Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2012 at 11:20pm
Hi Turtle,

My wife, Kerri, discovered her lump, too. 

I would echo the others in suggesting a second opinion. Even if it just confirms the first, it may give you peace of mind.  We learned a lot from our second opinion, even though they made nearly identical recommendations for treatment. It also helped us decide where to go for treatment - though I suspect in your case, since you said you work at Duke, you'd likely go there. 

I wish you all the best in whatever you decide to do.

Best regards,
Wade

Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; 08/07/2015 NED!

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SandraB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 06 2012 at 12:16am
I realise I am not as au fait as many of you, but I would have thought it was important to rule out metastasis - are the prognostic 'stats' skewed because there are women being diagnosed with early stage disease when in fact, they have metastatic disease? If no scans are done on diagnosis, then how sure can the treating medical team be of the 'stage' of their patient? I understand that may not change the treatment plan, but it sure changes how the patient feels.
Sorry if those thought didn't come out clearly, chemo brain is doing a number on me.
Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes.
Lumpectomy & ALND 10/2011
FEC-D 11/11 - 03/12
Radiation finished 05/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Feb 06 2012 at 7:31am
Hi, Sandra,
Maybe prognostic stats are skewed . . . I don't really know about that.  I was judged to be Stage 1 because of tumor size and negative nodes.  My oncologist felt the extra exposure to radiation in my case was not worth it.  I knew that chemo was needed because of the negative ER, so that wasn't in question.  Presently, I do not have follow-up scans or tumor markers done.  It has been my understanding that in most cases (although I know there are exceptions) metastasis, if it occurs, will present with symptoms in a short period of time.  And, with the nature of this disease, patients can have negative scans and then have a problem a very short time later.  We just have no guarantees about the future.  I wish you the best.
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 06 2012 at 7:45am
Hi Sandra,

When I was diagnosed, I had a chest x-ray and breast MRI prior to surgery.  A spot/shadow showed up on the chest x-ray so I also had a CT scan the day before my bi-mx to rule out mets.  I guess you see where there isn't a standard of diagnostic standards within the medical community.  Some do more testing/screening and others do not.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 06 2012 at 9:02am
Sandra,
Micromets are not picked up by radiological methods so a negative scan does not rule out the fact that tumor cells may have already spread. Also, CT scans involve significant amounts of radiation so it's a balancing act.

I saw an interesting case study where a woman with a history of breast cancer had a local recurrence of a 0.9 cm mass.  However her PET scan was negative for the tumor but her other breast was brightly lit up -- turns out she has been breast feeding on that side.
http://jco.ascopubs.org/content/28/32/e659
 
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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