Interpreting bone scan/PET/CT
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Topic: Interpreting bone scan/PET/CT
Posted By: turtle
Subject: Interpreting bone scan/PET/CT
Date Posted: Feb 05 2012 at 11:34am
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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 |
Replies:
Posted By: 123Donna
Date Posted: Feb 05 2012 at 12:39pm
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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 |
Posted By: 123Donna
Date Posted: Feb 05 2012 at 12:40pm
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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 |
Posted By: Lee21
Date Posted: Feb 05 2012 at 12:41pm
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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 |
Posted By: SandraB
Date Posted: Feb 05 2012 at 3:21pm
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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 |
Posted By: turtle
Date Posted: Feb 05 2012 at 3:33pm
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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 |
Posted By: Lee21
Date Posted: Feb 05 2012 at 3:34pm
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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 |
Posted By: SandraB
Date Posted: Feb 05 2012 at 3:58pm
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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 |
Posted By: SagePatientAdvocates
Date Posted: Feb 05 2012 at 4:03pm
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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 |
Posted By: Lee21
Date Posted: Feb 05 2012 at 6:01pm
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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 |
Posted By: 123Donna
Date 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. http://forum.tnbcfoundation.org/survey-how-many-of-us-had-dense-breasts_topic8892_page1.html - http://forum.tnbcfoundation.org/survey-how-many-of-us-had-dense-breasts_topic8892_page1.html ------------- 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 |
Posted By: LRM216
Date Posted: Feb 05 2012 at 10:07pm
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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 ------------- 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 |
Posted By: Wade
Date Posted: Feb 05 2012 at 10:45pm
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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; November 2018 NED |
Posted By: debB
Date Posted: Feb 05 2012 at 10:58pm
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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 |
Posted By: Charlene
Date Posted: Feb 05 2012 at 11:02pm
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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 ------------- 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 |
Posted By: Wade
Date Posted: Feb 05 2012 at 11:20pm
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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; November 2018 NED |
Posted By: SandraB
Date Posted: Feb 06 2012 at 12:16am
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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 |
Posted By: Charlene
Date Posted: Feb 06 2012 at 7:31am
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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 |
Posted By: 123Donna
Date Posted: Feb 06 2012 at 7:45am
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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 |
Posted By: Lee21
Date Posted: Feb 06 2012 at 9:02am
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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 - 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 |
Posted By: rigatonismom
Date Posted: Feb 06 2012 at 11:16am
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Hello All, I had the full round of scans - bilat MRI's, CT, Bone Scan, Muga Scan - before I started chemo. Nita ------------- DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11 |
Posted By: turtle
Date Posted: Feb 06 2012 at 11:47am
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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 |
Posted By: Lee21
Date Posted: Feb 06 2012 at 12:15pm
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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. Keep us posted about your imaging results. Lee ------------- 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 |
Posted By: Lee21
Date Posted: Feb 06 2012 at 1:38pm
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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. Found out more: http://www.healthimaging.com/index.php?option=com_articles&view=article&id=30147:breast-ultrasound-screening-marches-into-practice - http://www.healthimaging.com/index.php?option=com_articles&view=article&id=30147:breast-ultrasound-screening-marches-into-practice Seems like Texas has something written into the legislature last year -- it says "inform" law so maybe it's just the requirement to tell the patient. ------------- 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 |
Posted By: turtle
Date Posted: Feb 06 2012 at 3:36pm
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Lee, 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 |
Posted By: SandraB
Date Posted: Feb 06 2012 at 3:53pm
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Thanks for your input folks, 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. 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 |
Posted By: cheeks
Date Posted: Feb 06 2012 at 3:55pm
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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
------------- 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. |
Posted By: SandraB
Date Posted: Feb 06 2012 at 4:07pm
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Turtle, am sorry I neglected to say 'all the best' for your scans. I got caught up in my own thoughts. Best, 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 |
Posted By: overwhelmed
Date Posted: Feb 06 2012 at 4:45pm
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Sandra B, 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. Lori
< id="_npwlo" ="applicationpwlo" height="0">------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2- |
Posted By: denise07
Date Posted: Feb 06 2012 at 8:49pm
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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. ------------- DX Idc 10/07,st2,gr3,2/6 lymphnodes |
Posted By: Lee21
Date Posted: Feb 06 2012 at 10:34pm
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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 ( http://jnm.snmjournals.org/content/50/4/569.full#ref-54 - 54 ) before surgery and axillary staging in patients with early-stage breast cancer ( http://jnm.snmjournals.org/content/50/4/569.full#ref-56 - 56 , http://jnm.snmjournals.org/content/50/4/569.full#ref-98 - 98 , http://jnm.snmjournals.org/content/50/4/569.full#ref-99 - 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 ( http://jnm.snmjournals.org/content/50/4/569.full#ref-30 - 30 , http://jnm.snmjournals.org/content/50/4/569.full#ref-100 - 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 ( http://jnm.snmjournals.org/content/50/4/569.full#ref-54 - 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 ( http://jnm.snmjournals.org/content/50/4/569.full#ref-101 - 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. ------------- 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 |
Posted By: Charlene
Date Posted: Feb 06 2012 at 11:32pm
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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.
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 |
Posted By: turtle
Date Posted: Feb 07 2012 at 4:52pm
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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 |
Posted By: 123Donna
Date Posted: Feb 07 2012 at 7:12pm
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Turtle, Glad to hear you are healing well. 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 |
Posted By: denise07
Date Posted: Feb 07 2012 at 8:08pm
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Turtle,
So happy to hear you are doing well! ------------- DX Idc 10/07,st2,gr3,2/6 lymphnodes |
Posted By: Grateful for today
Date Posted: Feb 12 2012 at 9:57pm
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Hi Turtle,
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 - http://forum.tnbcfoundation.org/vitamin-d3_topic5338.html Note: See referenced articles on p. 26 of forum topic. Current recommendation for all TNBC under 60 years to consider seeing certified genetics counselor re: BRCA testing: http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458.html?KW=BRCA - http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458.html?KW=BRCA 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 - 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 - 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 - 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. With caring and positive thoughts, Grateful for today............Judy |
Posted By: turtle
Date Posted: Feb 14 2012 at 11:58am
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Hello All! 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 |
Posted By: Lee21
Date Posted: Feb 14 2012 at 3:24pm
Posted By: Lee21
Date Posted: Feb 26 2012 at 2:29pm
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Hi Turtle, How are you doing with your first chemo? We're all thinking of you, Lee ------------- 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 |
Posted By: turtle
Date Posted: Feb 27 2012 at 11:34am
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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 |
Posted By: ds21
Date Posted: Feb 27 2012 at 12:12pm
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Being proactive on the GI seems to help. My wife had some of the achiness after round 1 of neulasta, but not so much later. We decide about what to cook day by day because it is hard to predict what will taste good. She loses weight the first few days after chemo and she works to gain it back before the next round. David ------------- Co-survivor |
Posted By: Charlene
Date Posted: Feb 27 2012 at 12:35pm
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Hi, Turtle,
The constipation from the pain/antinausea meds was a major unpleasant side effect for me, too. By the third treatment, I had it under control by taking Miralax as soon as I got home from infusion. And, continuing to take it the first few days. Once that time period passed, I was OK. Wishing 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 |
Posted By: 123Donna
Date Posted: Feb 27 2012 at 1:01pm
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I found Collace to help also.
------------- 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 |
Posted By: steelers67
Date Posted: Feb 27 2012 at 3:19pm
| i was diagnosed with tnbc back in sept |
Posted By: Lee21
Date Posted: Feb 28 2012 at 8:52am
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Hi Turtle I had the same kind of constipation problems the first time around and had better luck the second time. Even though I am already on a high fiber diet normally, the constipation was still a problem. I started taking Peri-colace (stool softner + stimulant-laxative) on Saturday (chemo on Monday) and would continue with daily Peri-colace through the weekend. When my bowel habits started normalizing, I would switch to Miralax for a couple of days and then stop altogether, until Saturday rolls around again. As you know, the GI mucosa is getting nuked the same way and they don't want us straining which could lead to undesired consequences such as bleeding. Regarding nausea, the first time, in addition to Emend and Dexamethasone, I also took a Compazine the first 3 days. That added to the constipation. The second time around, I didn't take Compazine and didn't have any worse nausea. I also wore "Seabands" -- these are wrist bands that are supposed to work off acupuncture principles. I wore them on a cruise once and I never did have the seasickness I always had before. I seemed to tolerate the Neulasta reasonably well except for developing head fullness that evolved into a heavy-throb over my right eye. It went away in a day or two. Are you getting the Neulasta shot in your arm or abdomen? My second dose was self-administered and I chose the abdomen (more of a skin fold). The nurse training me said the abdomen might be preferable for some drugs, allowing for better absorption. The first week when my appetite was at its worse, I found eating in smaller installments helped. The second week I felt better. I was also instructed to take a proton pump inhibitor (initially Pepcid, then Prilosec) daily. I took the inhibitor daily the first week and part of the second week. The reason for the proton pump inhibitor (which inhibits acid reflux) is presumably because of the AC nuking the gastric epithelium. That might also help with the queasiness. You might want to check with your onc team if you should take Prilosec. Prilosec is over the counter and I think a little expensive. You NP can write you a prescription for the generic variety as well. You should definitely start to feel better this week. Lee ------------- 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 |
Posted By: LRM216
Date Posted: Feb 28 2012 at 8:55am
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Welcome Steelers:
Happy you have found us, but also sorry that you had to. Please feel free to inform us of your stats, treatments, etc. and jump on board with us. TN can be a very lonely scary disease, but it doesn't have to be once you know all the facts, which you will certainly do here on this thread. The greatest bunch of men and women ever - I couldn't have gotten as far as I have without each of them.
Hugs,
Linda ------------- 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 |
Posted By: turtle
Date Posted: Feb 28 2012 at 1:21pm
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Hi Lee and all, thanks for the good advice! I think you and Charlene are spot on about managing the constipation, and I will start doing Miralax, etc. early, rather than waiting for symptoms to appear. I did not take compazine for nausea (although it may have been prescribed), but instead did ondansetron (Zofran) with the Dex and the Emend on days 2 & 3 (in addition to the day of). These worked well enough, still have this mild nausea that feels like you are car sick. I know that one of these also has headaches as a side effect, which I also did get. I was also VERY thirsty after chemo, so I drank a lot of liquids, which helped get the red devil (doxorubicin) out. For some reason, I have been craving koolaid  (all non-citrus flavors: black cherry, blue rasperry, etc.).Interestingly, it was my doctor who suggested before starting that I self-administer the Neulasta shot, saying it would save time by not having to come in and wait around for someone to do it. From the sounds of some other posts, it may also save on insurance costs (although I have yet to get a bill for anything). My husband just pinched the skin in my upper arm to do it. I still feel like I have some achiness from this though, but am managing this with ibuprofin and claritin. I am definitely feeling better, but still get pretty tired. I am not looking forward to the last couple of rounds. Cancer really sucks. ------------- 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 |
Posted By: Lee21
Date Posted: Feb 28 2012 at 1:49pm
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Turtle, Regarding Neulasta, G-CSF is supposed to mobilize the granulocytic lineage pretty quickly after administration of the drug. The bone pain is thought to be due to G-CSF induced changes in the bone marrow cavity (e.g. pressure). So we get a good bounce in the WBCs, especially the neutrophils. But there is a lag in our own stem cells/progenitors rebounding so the nadir of our counts is stated to be between 7-10 days after chemo administration. Hopefully our own stem stems/progenitors rebound somewhat so that we are in reasonable shape when the next round comes about. For dose dense the cycle is 14 days, so it could be dicey. Our RBCs depend only on our stem cells/progenitors rebounding so the erythroid lineage may be the most at risk. Of course the platelets are an issue too. In my own limited experience (2 cycles only), my platelets have been less of an issue. However the insult from the chemotherapy agents is cumulative, so it will only get worse before getting better. Drinking plenty of fluids is a really good thing -- in addition, I was told it will help with constipation. Zofran I am sure is very bit as good if not better than compazine. Another thing I noticed is the skin gets really really dry as the days go on. When I was at the onc clinic yesterday I was told in forceful terms to make sure my nasal passages are humidified (Ocean saline spray), lips greased with chap stick, and to put oodles and oodles of moisturizing skin lotion. Of course Michigan winters don't help either. Keep us posted as we go through this chemo journey together. Lee ------------- 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 |
Posted By: TNBC_in_NS
Date Posted: Feb 28 2012 at 5:32pm
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Hi David & Turtle!
Welcome to our wonderful web site! There are so many wonderful people here that know so much about this awful disease...from personal experience....that any questions you have feel free to ask away, someone always comes by that has the answers. I am so sorry that you have to be here but happy you found us!
I had the Neupogen and did the self injections in the tummy. Not pleasant but did the trick with the severe bone pain! Constipation is awful at the best of times but with the chemo it is worse. Stool softeners and lots of fluids are the best method. We need to keep our systems hydrated because the chemo is so harsh it takes all the goodness we have until our bodies begin to make more when the chemo is done....
We do have a wonderful Spiritual thread and those members pray every day sometimes all day long for everyone here on this site and others. Drop over is you like. We have daily scripture readings to start our day and each leave a prayer when the spirit moves them... God bless.
Take care and once again, WELCOME.
Helen in Canada ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: Autumn10182001
Date Posted: Feb 28 2012 at 10:28pm
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regarding the constipation... i had it terribly... the PA suggested I (granted this is not a good thing to put in our bodies..).. that I go to mcdonalds and get a big mac.. well I did a couple of times.. and guess what.. within in an hr, no more issue... I don't eat those things .. but they did help those few times.. when all else failed..
------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: turtle
Date Posted: Feb 29 2012 at 11:42am
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Too funny Autumn...that made me laugh! A big mac to go with my liters of koolaid! If I do it, at least when I'm done with chemo I probably will never be able to stomach either again! ------------- 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 |
Posted By: turtle
Date Posted: Feb 29 2012 at 11:47am
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Lee, Have you read anything about glucosamine chondroitin to help maintain bone density with all the hits our hematopoietic lineage takes? I know there have been suggestions to take Calcium + D3. My big problem is that I haven't been taking these since I have a hard time swallowing large pills anyway, and with chemo, the thought of trying this makes me gag. I just saw an add for chewable Calcium + D3 which I'm going to try to find, but the chondroitin looks like it's just a tablet form. ------------- 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 |
Posted By: Lee21
Date Posted: Feb 29 2012 at 12:35pm
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Turtle, No I haven't heard anything about glucosamine for preventing osteoporosis -- I don't mean to be flippant : the only time this was brought up was when our dog developed an anterior cruciate ligamental tear. I just did a literature search in PubMed "glucosamine" and "bone density" -- the only relevant article again talked about osteoarthritis associated with ACL tears (in rabbits). "glucosamine" and osteoporosis did not bring up anything. You might want to have a baseline bone density scan if you don't have one already. Bisphosphonates could also be helpful. I have osteoporosis by bone scan and my onc mentioned giving me a yearly IV injection of one of the bisphosphonates. I am taking Ca 1 gm and Vitamin D3 2000 IU daily. I took bisphosphonates orally previously but couldn't tolerate them and stopped after a few months. There have been several trials on whether bisphosphonates are efficacious in preventing recurrences and bone mets. I believe the current thinking is that the data are not there to support bisphosphonates being part of the standard of care (there are others on the forum who may know more about this than I do). The theory on preventing bone mets is that if you strengthen the bones, then mets are less likely to successfully seed. Donna may be able to provide you with more information -- she is the resident expert on Ca and Vit. D3. Lee Lee ------------- 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 |
Posted By: 123Donna
Date Posted: Feb 29 2012 at 12:50pm
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Lee and Turtle, We've had a couple of threads on bisphosphonates in the past. I was in one of the clinical trials in 2009 and elected to the clodronate (daily pill) arm. When I had my recurrence in Nov 2010, I had to leave the trial. http://forum.tnbcfoundation.org/bisphosphonates-clinical-trial-any-info_topic4591_page8.html?KW=bisphosphonates - http://forum.tnbcfoundation.org/bisphosphonates-clinical-trial-any-info_topic4591_page8.html?KW=bisphosphonates http://forum.tnbcfoundation.org/sabc-bisphosphonate-results-clodronate-zometa_topic9413.html?KW=bisphosphonates - http://forum.tnbcfoundation.org/sabc-bisphosphonate-results-clodronate-zometa_topic9413.html?KW=bisphosphonates My personal opinion is that chemo is harsh on our bones, plus puts us into menopause if we're not there already. It's important to know our bone density and possibly use bisphosphonates to maintain the density. I'll be asking my onc at the next visit. 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 |
123Donna wrote:Posted By: ds21
Date Posted: Feb 29 2012 at 1:25pm
|
@Autumn - LOL! Maybe MacDonalds should advertise this as a new use for the Big Mac.
------------- Co-survivor |
Posted By: Grateful for today
Date Posted: Mar 11 2012 at 11:53pm
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Turtle,
Sending lots of caring and positive thoughts for your chemo.......3/12 Monday. Grateful for today............Judy |
Posted By: Lee21
Date Posted: Mar 12 2012 at 3:39pm
|
Hi Turtle, hope you sail through cycle 2! I just got back from cycle 4 -- they warned me this will be the toughest in terms of fatigue. Are they using lower arm veins or hand veins for you? I guess the nurses want to stay away from hand veins -- they used them 3x already. Everytime they go elsewhere, I get stuck twice (it's happened twice now). Sometimes I wonder if I wouldn't have been better off with a port but there are a lot of problems with ports too. And I am half way through. Thinking I should do some upper body/arm exercises to build muscles and veins! Lee ------------- 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 |
Posted By: debB
Date Posted: Mar 12 2012 at 7:01pm
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Lee,
I was told that they stay away from joints. Since Adriamycin is a vesicant, it will damage the joint if it leaks out so they try to steer clear. Before my port, they did my first cycle halfway up (or down!) my forearm. It didn't leak but I did react to it and now have a three inch stretch of very hard vein. You would OT want to have that anywhere sensitive! Glad you made it through that part uneventfully! 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 |
Posted By: Grateful for today
Date Posted: Apr 22 2012 at 11:09pm
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Hi Turtle,
Sending caring and positive thoughts for TAC #4 tomorrow. Think you you said on another thread that you planted some native species to attract butterflies. So, hope there are some butterflies to greet you when you get home. Grateful for today..............Judy |
Posted By: Grateful for today
Date Posted: May 13 2012 at 2:26pm
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Hi turtle,
Sending caring and positive thoughts for TAC #5 tomorrow. Hope the TAC from 3 weeks allowed you to enjoy a fairly good Mother's Day today. And if the butterflies didn't greet you when you got home from chemo #4, hope they greet you tomorrow when you get home! Grateful for today.............Judy |
Posted By: turtle
Date Posted: May 13 2012 at 4:49pm
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Thanks Judy for your thoughtfulness. I am ready, both emotionally and physically for round 5, and after this only one to go!!! Just being able to see the light at the end of the tunnel is helpful. Haven't had too many butterflies yet, odd since spring got such an early start this year. We were treated to the chatter of owls in our trees last nite...not their usual: who whoo who whoo, but something else, more like a conversation; later the fox came around. I love the sounds of nature, so it was a delightful evening. Alll the best to you as well this mother's day, and many more to come Big cyber hugs, C ------------- 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 |