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Old 09-30-2016, 05:36 AM   #1
TiffanyS
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Differing Opinions Between Surgical Oncologist and Medical Oncologist–Who to Believe

I met with my surgeon yesterday in order to go over the results of my second CT scan and get a second opinion, as my medical oncologist told me that there were dots on my lungs and a large lymph node in my chest area, which means that my breast cancer has spread. My medical oncologist advised that the dots on my lungs showed up on my first CT scan, which was done last February, but they all thought they were post surgical, and not cancer. When I met with my surgeon yesterday, he showed me the worrisome spots on my lungs, but told me they were very small and that there’s a chance that they are not cancerous. The only way to know for sure is to perform a biopsy, which they don’t like to do as a lung biopsy is only 80% accurate. So, if it comes back negative, there’s a 20% chance that the results are wrong. I told him that my oncologist told me there was a large lymph node in the middle of my chest that she found worrisome, but he couldn’t find it. He thinks she was referring to one of the larger spots on my lung, that’s close to my center chest. He doesn’t think it’s a lymph node. When I spoke to my medical oncologist, she told me my cancer was aggressive, and that I’m a rarity, which doesn’t leave me feeling very confident, however, my surgeon doesn’t seem to think that it’s as aggressive as she thinks it is, and says with proper treatment I should be able to live a long life with cancer, as others do, and may even go into remission. I hope he’s right and she’s wrong, but I want to be realistic, and I’m not sure who to believe. For now, I’m proceeding with my treatment as planned, but I’m thinking about having another doctor look at my test results in order to get a third opinion. Have any of you been given a different opinion between your surgeon and oncologist, and, if so, whose opinions was right? Both my surgeon and oncologist are experienced and reputable, so it’s hard for me to decide whose opinion to believe in this matter.
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Old 09-30-2016, 08:19 AM   #2
sarah
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Re: Differing Opinions Between Surgical Oncologist and Medical Oncologist–Who to Beli

Perhaps get an appointment with a top radiologist who may be able to read the scan better? or a different test?
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Old 09-30-2016, 08:22 AM   #3
MaineRottweilers
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Re: Differing Opinions Between Surgical Oncologist and Medical Oncologist–Who to Beli

Are you a candidate for a PET/CT scan? It may provide more information. I'd definitely go for another opinion.
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11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

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Old 09-30-2016, 08:35 AM   #4
TiffanyS
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Re: Differing Opinions Between Surgical Oncologist and Medical Oncologist–Who to Beli

I have an appointment with my family doctor in a couple of weeks, and I’m going to ask him what he thinks. I’ll see if he can refer me to someone who can give me a third opinion. I’m not disputing the fact that my cancer has spread, and I want to treat it aggressively, but I would also like to have a realistic assessment as to how bad it really is.

I’ve asked my oncologist about getting a PET scan, but she doesn’t think it’s necessary. I’ve already had a breast MRI, an ultrasound, a bone scan, and a CT scan and my oncologist has agreed to send me for a brain MRI to confirm that the cancer hasn’t spread to my brain. I don’t know much about PET scans, so I’m not sure if it would show anything different than the tests I’ve already done. Is this something I should push for? I know some of you have had PET scans done, and if it’s worthwhile, I will push for one.
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Old 10-05-2016, 04:52 AM   #5
TiffanyS
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Re: Differing Opinions Between Surgical Oncologist and Medical Oncologist–Who to Beli

I went to the hospital yesterday for my second dose of Taxol, and spoke to my nurse practitioner while there. I mentioned my conversion with the surgeon, and she advised me that he was correct that they don't know for sure that the dots on my lungs are cancerous, however, they are treating me based on the assumption that they are. I took a blood test called CEA, which determines the tumour markers in a body. I have not taken this blood test before, because it does not detect breast cancer, however, it does show tumour markers that have spread. It takes three days to get these test results, so I won't know the results until my next treatment in two weeks. She told me that markers of 0 to 4 are normal, and anything above 4 indicates cancer. As I have never had this test before, they will use these test results to determine if the Perjeta/Herceptin/Taxol combination is working for me. If the markers go down when I'm tested again next month, that means it's working. If they don't go down, that indicates that the treatment may not be working, and they will then send me for a further CT scan. I also asked about getting a PET scan, but my nurse practitioner told me that I don’t meet the qualifications for a PET scan. It seems that our health care will only pay for it if you meet certain qualifications. I mentioned paying for it myself, but she said I don’t really need one right now, and that she doesn’t know if they would allow it even if I did. I won’t push it for now, but if the Perjeta doesn’t seem to be working, and I feel like I need one, I’ll push for it. The nurse practitioner also told me that she has another patient who had a over 100 treatments of Perjeta, and that it's still working for that patient. Let's hope it does the same for me!
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Old 10-29-2016, 03:58 PM   #6
Mtngrl
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Re: Differing Opinions Between Surgical Oncologist and Medical Oncologist–Who to Beli

If the only thing they had found was the local recurrence, then your staging would be the same, and removing the cancerous tissue around the mastectomy scar would be a good idea.

When people's cancer is Stage IV, the calculus changes. Especially at first, doctors don't do local treatment because the best shot at long-term control is to find a good systemic treatment.

I've never had any surgery, not even on the original tumor. If it had been breaking through the skin, or growing and getting in the way, they'd have taken it out.

That of course does not mean people aren't misreading your scans. It's just some context for you.
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4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 10-31-2016, 04:42 AM   #7
TiffanyS
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Re: Differing Opinions Between Surgical Oncologist and Medical Oncologist–Who to Beli

Thanks Amy,

I understand the logic of not having surgery right now. I just wish I knew for sure if the spots on my lungs were cancer. My surgeon told me that they may not be cancer, which my nurse practitioner confirmed, but advised that they are treating them like they are cancer anyway. I’m glad that they are, as they are most likely cancer, and I would rather treat them as such than not. That being said, my oncologist advised that there is a large, worrisome, lymph node in the middle of my chest, which my surgeon doesn’t see on my CT scan results. He sees four spots on my lungs, and no lymph node. I don’t know who is right between the two. They don’t want to do a lung biopsy, as they are not accurate, and I don’t qualify for a PET scan. My CEA levels are normal, but this test is not accurate either, so I hope my CT Scan I go for in on November 22 is able to give us some more information. I can’t wait to get those results!

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12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. Also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene.
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scare line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!
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