Sandra and Lee make good points regarding the information gleaned from additional scans such as PET/CT and bone scans. While it is true that these techniques have their limitations in detecting micromets as well as providing false positive hits, the data demonstrating the efficacy of adjuvant chemotherapy in increasing overall survival for TNBC patients (including those with early-stage disease) suggests strongly that even when found at an early stage, the likelihood of micrometastasis having occurred is high. That does to some extent indicate our staging (based on tumor size and node status) can be a bit misleading, but in the absence of other prognostic indicators, it's the best we have right now. In regards to node status, from the literature I've read, it seems that in the case of TN, there seems to be less of a correlation between node status and metastatic disease. (Hence my concern about my scans, because my node was negative, but I saw an enormous blood vessel thru the tumor when they did the initial ultrasound, and that's what scared me, because it is thought that TN is disseminated thru the vasculature rather than lymphatic system).
As for me personally, I would rather have more info from the imaging, because I think you can make a more informed decision that way, but the fact is, there aren't a lot of options for TN, so even with more info, the treatments may be the same. I think that is what some docs may consider. They also may consider their own experience with different insurance carriers as to what one may be willing to cover. I know in my case, they needed to call the insurance company to get approval for the PET scan. This is an unfortunate reality.
Right now, it's a week after my mastectomy, and I really want to wash my hair. I am stinky and feel really gross. Just needed to end on a light note!
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
Turtle, I hope your repeat imaging goes well and the best of luck in this journey we are all taking. I guess the main point I wanted to make is that scans are not 100% sensitive and 100% specific, and we can worry ourselves sick over things that may not turn out to be anything serious.
Keep in mind that TNBC was not recognized as separate from hormone receptor+ and Her2+ disease until fairly recently (2005) and that because the entity is defined by the absence of receptor expression, it becomes somewhat of a grab bag of different subtypes. This becomes an issue when dealing with population studies. Additionally, many of the studies out there are retrospective, spanning years if not decades in some, making specific recommendations a real problem. So, some of the concepts we have currently could very well change when more is known about TNBC.
Charlene you are absolutely correct. Connecticut in 2009 introduced into law mandating medical insurance companies to pay for women with radiologically dense breasts fort ultrasound screening. I wonder what other states are doing that as well.
I hear you about worrying yourself sick, that's exactly what I'm doing I think. All this waiting around is killing me. I now have appts for more imaging this Friday, and an appt with my onc the following mon (2/13), so I expect to hear the results of all the tests then.
In the meantime, went to great clips and got my hair washed. I feel much better. Hopefully will have the drains out tomorrow, which I hope means I'll get to take a real shower.
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
I was honestly quite surprised that it wasn't standard practice to scan and rule out metastasis at presentation. All the women I know of here in Australia were scanned either prior to surgery or prior to chemo, but it seems like there is a different approach in the US, depending on where you are being treated. I don't want to sound like the cynic, but is it in part to do with economics? Are staging scans ordered when insurance covers it? And not, when there insufficient insurance? And if no scans are done, does the treating medical team just 'assume' there is no metastasis? And I know there are generally symptoms when metastatic disease is present, but not always so. I hope I haven't offended here - I genuinely am interested in this. Studies that we read are statistics based, but if there isn't a standard practice to staging the disease then how reliable are the statistics and how reliable are these studies? Please feel free to point me in the right direction - I pretty much know nothin' about nothin'. And I'll happily pipe down now.
I had a full array of scans in addition to the mammo and ultrasound - PEM, PET, MRI, bone, as it was assumed mine had already spread due to the size. After surgery but before chemo I had an ECHO, bone density and full dental treatment. Original "estimates" of my tumor size were 5-6 cm. Post mastectomy the actual size was 4.5 cm and it had not spread.
Blair
Edited by cheeks - Feb 06 2012 at 4:15pm
Lump found 11/08 DX: 2/09 @52 TNBC L. Mast. 3/26/09, SN-, BRCA-, 4.5 cm (post surgical)T2NOMO Chemo: 4/09-10/09 Taxol x 12, A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
I think it varies by oncologists. I was scanned to for a trial, but I don't believe my onc would have otherwise done a PET scan. I did have a breast MRI prior to surgery. I have no doubt that my insurance company would have approved anything ordered. I am fortunate because my husband works for a large company that is self insured. It is administered by United Healthcare, but it is staffed by their people. So, in my case it's been the onc that doesn't scan, not the insurance company that won't pay for it.
I think it all varies depending on oncologists and insurance companies.
I also had a full round of scans before I started my chemo. I had a brain scan, breast mri ,ct scan of the chest abdomen and pelvis, a mri of the chest and a muga scan. Way to many scans for me to handle,plus all these scans where all done in ths same week.I forgot to mention a bone scan also.
I posted a review on the topic in OPEN ACCESS. Quoting: The presence of distant metastases, outside the breast and regional
nodes, is an important factor predicting prognosis and
directing the intensity of care, because
metastatic (stage IV) breast cancer has a low likelihood of cure.
Because of the
low yield, cost, and distress associated with
investigating detected abnormalities that are—for the most
part—false-positives,
baseline systemic staging is neither
performed nor recommended (54) before surgery and axillary staging in patients with early-stage breast cancer (56,98,99).
In the patients with more advanced disease (such as LABC or
inflammatory breast cancer), however, some evidence supports
the use of systemic imaging staging at the
diagnosis to rule out stage IV disease, which would significantly alter
treatment
options because of the high likelihood of
distant metastases (30,100).
Baseline systemic imaging staging needs to survey the chest, abdomen,
pelvis, and bones and includes chest radiography
or CT, abdominal ultrasound or CT, and bone
scintigraphy. According to current National Comprehensive Cancer Network
Practice
guidelines (54),
only chest radiography is recommended for stage I disease, and
additional bone scintigraphy may be considered for node-positive
stage II disease. However, chest radiography
or CT and liver ultrasound or CT may be optionally included for stage II
disease
with positive lymph nodes and a high index of
suspicion. A combination of these standard systemic imaging modalities
(typically
abdominal CT, bone scanning, and possible
chest and pelvis CT) are indicated for stage III disease or higher. 18F-FDG
PET or PET/CT is recommended as an option for patients with either
recurrent or stage IV disease in earlier breast guidelines
and recent PET-specific guidelines (101).
LABC = locally advanced (stage III)
These are for BC in general and not TNBC, where there are no specific guidelines that I have been able to decipher.
Thanks for finding and posting all the articles and research, etc. Since CT scans can't pick up stray cancer cells, I can't see that the recommendation would be any different for early stage TNBC. Glad to hear that your chemo is going well so far.
Just a brief update after seeing the surgeon today to have my drains removed. Path report puts the tumor at 2.5 cm, with clear lymph nodes (sort of: cytokeratin staining showed small subcapsular cluster in just one of the nodes). Pathological stage: pT2pN0(i+)pMX
Am healing well from the surgery, expect to back to work tomorrow.
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
Sending caring and positive thoughts to you for your 2/13/12 appointment (or whenever if date was
changed.)
From your posts on this forum and other threads, you already have a lot of knowledge on TNBC.
You have probably seen some of the threads I am going to mention (figured it was better for you
to see a thread twice instead of not seeing).
So, disregard the following if you already know the info or if you posted about it on another forum.
Have you seen the following forum topics?
Info on Vitamin D.
If you already know your vitamin D level, great.
If not, consider having it checked and then make a plan with your MD if it is low.
http://forum.tnbcfoundation.org/vitamin-d3_topic5338.html Note: See referenced articles on p. 26 of forum topic.
You either have already seen or will soon seen the discussion re: chemo and the order of
chemo meds if your chemo plan will include: ACT (adriamycin, cytoxan, taxol) or T-FEC
(taxol, 5-fluorouracil, epirubicin, and cyclophosphamide{cytoxan) )
see: forum topic: http://forum.tnbcfoundation.org/attention-newbies-important-new-chemo-study_topic7771.html This was a retrospective study. Some prefer prospective studies.
Study included all breast cancers not just TNBC.
Treatment plans were those in use 1994-2009
So, not a black and white situation.
Believe some comprehensive cancer centers due the taxol first and others do the taxol last.
According to the article, it said the mechanism for difference in outcome results due to sequence
of taxol was not clear. There has been some RESEARCH on drugs effecting microtubules which
raise the question of taxol timing:
http://forum.tnbcfoundation.org/research-on-new-therapies-to-limit-mets_topic5910_post51303.html?KW=microtentacles#51303 Original article: http://www.medicalnewstoday.com/releases/182239.php Since ACT and Taxol-AC protocols are both used depending which comprehensive center one looks at,
hopefully this means that each center can explain why they are doing it the way they do.....and not
the other way. Again, remember, info from both retrospective study and research article.
Have mentioned this as many would prefer to know about this question and discuss it with their MD
prior to chemo if their chemo will include ACT or Taxol-AC.
THe medical oncology visit usually includes getting good and specific answers to:
(and other questions of course)
How many TNBC does MD treat in a year?
What are my chemo options (for my individual particular case) and pros and cons of all treatment
protocols as well as pros and cons of applicable clinical trials.
From the Duke Breast Cancer site (with Duke being a NCCN Cancer center), looks like Dr. Blackwell is
the principal investigator/investigator on many clinical trials (including TNBC ones) and has published.
You have mentioned you are pleased with your team.....that's great.
Think some suggest considering a 2nd opinion as the chemo protocol is obviously very important for
TNBC which has no hormonal backup plan. Think because you are close (I think) to UNC with
Lisa Carey MD and Cary Anders MD some have suggested consideration of a consult there.
We all appreciate that each person and case is an individual situation.
You will do what is best for you and that will be the best treatment plan for you.
Thank you for your posts on the different forums....have found them both interesting and
thought provoking.
This is such a supportive forum, and I can't tell you how much it means to see that I've had well-wishes and input from complete strangers on my email inbox!
I had 2 new scans on Friday 2/10 and another today 2/14. On Fri, I had an Xray of the rib that lit up on my bone scan. Mind you, when I say 'lit up', the actual phrase used was:
Small, faint focus of increased uptake is present at the posterior right approximate fifth costovertebral junction.
The follow up Xray revealed no pathological findings of any kind, so hopefully this is really clear.
I also had an MRI Fri for an area on my liver, that the original PET scan report said:
Ill-defined lesion in the dome of the right hepatic lobe. This is indeterminate and could represent a benign hemangioma vs a metastasis, although a metastasis is felt less likely in the absence of abnormal FDG activity. This could be further evaluated with MRI. The other well-defined low-attenuation lesions in the left hepatic lobe are favored to represent benign lesions.
The follow up MRI was similarly unrevealing, so I was sent for another MRI today with a different contrast agent called Eovist. The reason for this new scan is because one of these lesions was still inconclusive on the follow-up MRI, and it is in an area that would be difficult/impossible to biopsy. Since surgery to remove this area would at this point be a little drastic to rule out metastasis on a lesion that both the radiologist and my oncologist think is not a met, they are trying this one last imaging modality, but we are proceeding with a chemo regimen to begin 2/20, as if there is no evidence of metastasis.
That puts my pathological stage at this point to be: pT2pN0pM0.
I'm going to post separately to get feedback about the proposed chemo regimen....
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
Thank you for the detailed update. I am glad your scans are heading the right direction (i.e. no mets). Sometimes I wish the radiologist would stop equivocating and just say yes or no. The cynic in me thinks that they have this new contrast agent they are dying to try out, MRI being an expensive procedure as well. At the cancer center I am being treated, the radiologist had put in an item for the MRI billing that BCBS deemed was investigational and refused payment. We had to call BCBS then the hospital billing to protest the cost. I would make sure that your health insurance will cover the new contrast material (I have the most comprehensive coverage BCBS of Michigan has to offer but there are a lot of hidden riders that they don’t tell you about unless specifically asked).
I am glad you are starting chemo since that is the really the crux of the treatment plan for our disease. You will find many knowledgeable people and people who are or have been in clinical trials.
Best of luck and know you are not alone in this journey, Lee
Ugg, chemo is not fun. Did ok the day of, and was feeling pretty good on day 2, but got tired by that evening, and then...the neulasta shot. I think that's what has knocked me out most. I was anticipating flu-like symptoms on day 7-10, but it seemed to hit me on day 5, with night sweats and achiness. I'm back at work today, feeling mildly nauseous, but doing small snacky foods, which is helping. I only took meds on day 2 & 3, and have managed my other symptoms with just ibuprofen. The other thing that has been really uncomfortable has been the constipation, which has kept me away from taking any other meds after day 3. I do get tired easily, but I have to say, I expected to feel better after just one round, so I'm not looking forward to 5 more. I applaud your efforts at continued posting, I could not muster much energy during week 1.
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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