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.

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?

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.

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.

Re: Differing Opinions Between Surgical Oncologist and Medical Oncologist–Who to Beli
 

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.

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!