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PR+, ER+, HER2- Waiting on Oncotype DX Results & Pathology

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I am 53 years old and just recently diagnosed with a 6mm IDC in my right breast. I had a lumpectomy last Thursday and recovering well from that. I get these bouts of extreme fatigue and need to rest for a while. This is unusual for me as I usually go all day long with no problems. My incision site feels like it's vibrating; not sure if this is normal, and it feels a bit like an eye twitch but faster.

I finally got the results from my original biopsy, which tell me I am 99% ER+, 90% PR+, and HER2- (+1). Based on this, my oncologist told me he would send out my biopsy material for the Oncotype DX test to determine if I would benefit from chemo. He said this could take a couple of weeks. So I am now waiting on the pathology from my lumpectomy to see my margins and if my sentinel node was positive/negative. The surgeon said it didn't look like I had cancer in my lymph nodes but that we would have to wait for pathology. I was a bit drugged at the time and didn't think to ask if the "it didn't look cancer" was from a naked eye examination or if he actually looked at it under a microscope or some other sort of imagery during surgery. I have some information now and still waiting on the full picture. I got offered a job that should start on the 9th, and I am unsure if I will feel up to doing it given that radiation will start soon after and chemo is still unknown. I have been looking for a job since I finished my master's degree in August and haven't been working (for many reasons). Waiting a while longer shouldn't be a big deal, but I am considering passing on this particular job. It will be a one-way hour-long commute, so two hours on the road daily and I will go in for daily radiation starting probably after the first week. I don't know if it will be manageable. So I am wondering what your experiences have been with being ER+, PR+, and HER2 - and coming back with an elevated Oncotype Dx score? Also, interested in what the margins and sentinel node will inform the doctors regarding treatment options. Right now, I am certainly going to have radiation and hormone therapy. I meet with the radiation oncologist on 1/19. Also, who in this situation would start a new job that essentially amounts to a new career and a ton of professional responsibility during radiation and facing possible chemotherapy? I have read that some of you have kept working, which I applaud, like seriously, quite loudly. In my new profession, I will need to have my wits about me at all times and pay super careful attention to what people are saying to me. Basically, I will need to be on, full-on, all cylinders firing in my brain at all times. What has been your experience with radiation and the side effects of hormone therapy? Did you take any hits to focus and attention? Right now my brain is all over the place, but still a bit in shock about this new Diagnosis.

I know I asked a lot of questions! That's sort of how I roll!

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Comments

  • alicebastable
    alicebastable Member Posts: 1,945
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    Hi, concernedaboutresults. My cancer field trip was almost five years ago, but I'll remember what I can for you. My er/pr percentages were very similar, although my tumor was a little larger. The vibrating feeling is from the sentinel node removal, not the tumor excision. I still feel it sometimes! The wrong deodorant can set it off, or a bra that's too close. There's a nerve there that gets dinged during the node removal, I think. Have you met your radiation oncologist yet? I had an initial meeting before surgery and was told I'd get 22 sessions. Pathology is done at the hospital (or sent to a larger local one if yours is a small facility) and not sent out to the Oncotype place (thats strictly a genomic lab), and I had those results by the time of my follow-up appointment 7 to 10 days after surgery. My single node had a micromet, and the only impact that had was I needed 33 radiation zaps instead of 22. My oncotype came back at about the 3 1/2 week mark, at a 17. That put me in the no-chemo zone. Positive nodes are considered in the chemo-or-not decision, but it's usually if there's more than 3 that would tip the decision to chemo even with a low oncotype score. I was 68 at the time, so your safe zone might be a little different since you're younger. I was already retired, so I can't help you with work advice. But my facility offered early morning radiation sessions; I think mine were at 7:30 or 8:00. The initial set-up and mapping session took about an hour, but the regular sessions were 5 to 10 minutes, with Mondays slightly longer as there was a new x-ray and a quick check-in with the radiologist or nurse. I was one of the fortunate people who had only very minor skin changes, turning slightly pink and dry, and more reddish (like a sunburn) around my collarbone near the end. Each radiologist has preferred skin moisturizers for the patient to use after each session. I hope someone who worked and had a similar commute comes along to weigh in on that! Is there any chance you could work from home or on a reduced schedule as a temporary medical accommodation?

    Best of luck to you!

  • concernedaboutresults
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    Hi Alice. I have an appointment with the radiology oncologist on the 19th. Early morning appointments would be nice and so would working part-time. I wish I could work from home, but that's a pretty firm no. When I interviewed, I was just a few days after the biopsy, but I didn't have results yet and still hoping for a less concerning result. Literally, right across the street from my new job is a different cancer center from the one my surgeon referred to me. The doctors I have met with up until now are a 20-minute drive south from my home. The new job is about an hour north, in the opposite direction, from my home. Either way, I'm going to have to make some difficult decisions. If I take the job, I most likely will have to see the providers near my work. If I don't take the job, I will continue with the one I was referred to about 20 minutes away. There is no way I will drive 20 minutes south for a 10 - 15 minute appointment and then another 1.5 hours north to the job daily for however many weeks the radiation takes. I just don't think it would be possible. I am willing to change oncology providers if I can do the job effectively. Either way, I delayed my start date until after the first two appointments on the 19th and 20th.

  • meow13
    meow13 Member Posts: 1,363
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    Well I had 2 1cm tumors about 4.5 cm apart one ilc and one idc, er+ 95% pr -, her2 -, my oncodx score was 34. I chose not to do chemo had left side mastectomy with DIEP reconstruction 4 months later.

    Did almost 4 years AI, I was 53 at the time. That was 11 years ago. No radiation needed. Really glad I didn't do chemo even though my score was high.

  • salamandra
    salamandra Member Posts: 745
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    I think that if it is important to you (whether financially or for other reasons) to start the new job, it is reasonable to take it and see how it goes. It's impossible to know your side effects ahead of time, and it's possible you will do just fine. If things go rough either with the new job, the cancer, or the combination, and you need to give up the new job - will you be in a worse place than if you hadn't taken it at all? If you need to resign, you can just say 'cancer' and 'chemo' and most places should be very understanding/nervous of medical discrimination.

    On the other hand, if there are other reasons you're not that into the new job opportunity and you're wondering if the unknowns and the treatment is enough of a justification to turn it down, I say it absolutely is (assuming you can afford it financially). Taking care of your mental and emotional health during this crazy process will benefit you not only in the moment but in the long term.

    So basically, I think it's just fine to go with what your gut tells you feels right for you.younger age and larger tumor and I still came back with a low oncotype score and avoided chemo.

  • portugalsunset
    portugalsunset Member Posts: 1
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    Hi! I have recently received almost the exact diagnosis. They presented me with a radiation option called Brachytherapy or Internal Radiation. The treatment course is only 3 days. I am not sure if you are a candidate but it is worth looking in to. This new cancer is unfortunately my second so I am opting for a double mastectomy so I will most likely not need radiation. Had 6 weeks of traditional radiation with my first diagnosis and did not really have any issues but had a bad experience with the staff. Good luck

  • moderators
    moderators Posts: 8,177
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    Hello, portugalsunset, and welcome to Breastcancer.org! We're sorry for what you're here, but really glad you found and joined this wonderful community. Not sure when is your surgery scheduled, but here is a thread you may want to read/join too: Topic: January 2023 Surgery Buddies?

    Also, we have a forum for those confronting a new primary diagnosis or undergoing treatment, see here: Second or Third Breast Cancer

    Hope this helps. Please keep us posted and we're sending our best to you!

    Best,

    The Mods

  • concernedaboutresults
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    Hi Portugalsunset. Thanks for your response. I have moments of second-guessing my decision to have only a lumpectomy due to the small risk of cancer returning. I hope you have a good result with your double mastectomy and treatment this go around.

    Meow13, hello. I am curious how long they will want me to stay on hormone suppression therapy. I have been postmenopausal, confirmed by blood labs, since around 2015. I had a partial hysterectomy in 2011 but kept my ovaries. It was a huge debate between my gynecologist and me because I wanted her to take it all because of hormonal migraine. She disagreed that it was worth the risk. You were 53 and only did 4 years, so maybe I will be lucky and only be on them for a while.

    Hello, Salamandra. Thank you for responding to the job aspect. You brought up a few important things to consider outside of the need for treatment. I spent the past five years working on finishing my bachelor's degree and completing a master's program as a non-traditional later-in-life career change student. I completed my program in August and then moved with my family from a big city to a rural area fulfilling a big dream of having enough land for chickens and goats and for the dogs to run themselves tired. To say all this, the opportunities are much more limited, and I can't afford to burn any bridges with any of the employers hence, why I am willing to drive an hour in the first place. I think it would be worse to start a job where they made a significant investment in my post-graduate training than to turn it down with an explanation and apply again in the future when I can juggle the demands. And, as it is, I haven't really brought any income in since the pandemic started. I was more focused on completing my master's. So waiting a few more months to complete treatment shouldn't hurt our bottom line too much. Any income I bring will be added security for retirement.

  • magnoliachild
    magnoliachild Member Posts: 35
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    Hi Concernedaboutresults,

    Similarly, I had completed a midlife master's degree and had been waiting for the right opportunity to open up. I learned I had breast cancer on a Monday in October 2022, interviewed for a new position on Tuesday, interviewed for a different position on Wednesday, and was offered and accepted the second position on Thursday. It was definitely a whirlwind week of ups and downs. I debated whether to go through with the interviews and if it was wise to take on a new position with what I was facing. In the end, I decided to go ahead with it. I didn't want this cancer to rob me of an opportunity I had worked so hard for and I knew that having new challenges at work would be helpful. My lumpectomy was done in the interval before I transferred to the new position. Just completed my first week of radiation. My biggest concern now is how extensive the fatigue will get.

    Ultimately, you have to decide what is best for you. Which decision feels you with more hope or dread? My advice is to listen to your gut.

    Best wishes!

  • concernedaboutresults
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    Thanks for the feedback, everyone! Not long after I posted this, I requested to move out my start date. I had some more time to think through all the pros and cons. I will most likely turn this opportunity down for the moment and try to do it in a way that I might be able to apply again in the future. I haven't taken any actions because I am still recovering from surgery and want to have those conversations when my mind is clearer. I'm still waiting on all the results and treatment plans, but will hopefully have some more information by mid-part of next week and the following. Is it bad news if the pathology from the lumpectomy takes longer than expected to come back? I am thinking it's just a resource thing because of the Christmas and New Year holidays.

  • meow13
    meow13 Member Posts: 1,363
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    I really believe there are long term effects with AI drugs. I still have occasional trigger finger and some come and go sore joints.

    My oncologist said ok to 4 years only, I am waiting to see if there was any cancer in my gallbladder.

    It's all what your willing to put up with, I know some people that had no side effects.

  • magnoliachild
    magnoliachild Member Posts: 35
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    Concernedaboutresults, I got my lumpectomy path report at my 2 week post-op visit with my surgeon. She told me at the time of the surgery that no news was good news. Do you have a post-op scheduled?

    The oncotype and BCI results took over 3 weeks to arrive which is why I didn't start radiation until 6 weeks after my surgery. The delay was maddening! My nurse navigator warned me at the beginning that there would be a lot of hurry up and wait situations.

    Don't be afraid to make waves. Nicely if you can. Smile

    I am learning to advocate for myself which is not something I am used to doing. Fortunately, everyone I have dealt with has been very nice and responsive. If you have questions or concerns, call or message and ask for an update.

  • concernedaboutresults
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    Hi Magnoliachild - What is a nurse navigator? I don't believe I have one. I am 3 weeks post-op, and my followup is tomorrow. I called today to confirm they had the pathology report today before the appointment, and they confirmed that they have it. I guess now it's about margins and sentinel nodes. I need to refresh my memory on what the sentinel nodes could possibly mean. My husband seemed to recall that margins that are not clear of cancer cells could possibly mean another surgery. I don't know what that would look like.

  • alicebastable
    alicebastable Member Posts: 1,945
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    I had narrow margins in my lumpectomy - all it meant was it didn't hit the minimal measurement recommended for a clear margin. So I had a re-excision, which meant going back to the hospital for a very brief trip to surgery, with just the lightweight anesthetic. My surgeon used the previous excision, no disturbing of the node one, and I didn't feel a thing afterwards. I was home well before noon. Re-excisions are pretty common.

  • magnoliachild
    magnoliachild Member Posts: 35
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    Concernedaboutresults,

    Clean margins is an indication that they got all of the diseased tissue in that area. Think of the sentinel nodes as the first stops the cancer cells would have made as they traveled outward through the lymphatic system from the original site. If no cancer cells were found in the sentinel nodes, this is an indication that the cancer has not spread.

    Some hospital systems have nurse navigator who can help you understand the process and assist you in setting up appointments, etc.

    Good luck tomorrow!

  • concernedaboutresults
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    I am getting pathology report from lumpectomy today. I hope it's going to be okay.

  • concernedaboutresults
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    Well, I had good news yesterday. I didn't know how much worry I had carried around until it lifted yesterday. The margins looked clear, and the SLNs were negative. I guess my IDC cancer is stage 1a which is good news as far as a cancer Dx. The pathology report showed some lobular cancer in situ. If I'm tracking correctly, I looked it up, and this would be less concerning than the IDC. It would be unlikely that this would have metastasized anywhere else if it wasn't in the SLNs, right? Will they run other tests besides the Oncotype DX, which I should hopefully get back to next week when I meet with the oncologists? I'm not asking for a crystal ball reading, just what you all might have experienced. I am anticipating getting some bloodwork, and hopefully, they will test my hormones as I've been post-menopausal for longer than typical for someone my age.

    Here's the primary thing working through my logic processing about hormone blockers. My spine is a mess from a rollover car accident years ago. I've had two spinal surgeries in my neck with four levels fused, and in my lower spine, a bunch of levels have various problems that the surgeons wanted to operate on. I wouldn't let them because I couldn't muster the oomph to sign up for another procedure. My neurosurgeon told me it was only a matter of time before I would require another surgery on my neck, and at that point, I would be unable to drive due to range of motion limitations. I have been cautious with my spine since then, like really careful. I don't do anything that jolts my spine, think roller coasters or riding horses. Anything that puts bone loss into play could put my four-level fusion at risk or exacerbate the problems in my lower spine, maybe. I don't know and need to get educated about it. I need a good risk-benefit analysis for a research study in situations like this related to hormone blockers and bone loss. If someone has already summarized them here, I would like to look at the research. I can launch a search on google scholar, but someone might have already done the groundwork. Is this a moderator question?

    Thanks for all of the support on here. I am incredibly appreciative!

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    That is excellent news in the breast cancer world. Wonderful!!! But a few other pieces would be helpful to know before any advice is given at least on my end. Did you have LVI? Also what grade were you and what were your receptor scores? But yes LCIS isn't worrisome. At this point it's just the invasive they care about.

  • alicebastable
    alicebastable Member Posts: 1,945
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    You could take Tamoxifen instead of an AI; it actually strengthens bones.

    I was 10 years out from a very thorough hysterectomy when I was diagnosed with breast cancer. I'd had the hysterectomy at 58 due to endometrial cancer. When they tested my hormone level before that surgery, it showed I was still cranking out hormones and nowhere near menopause yet. One doctor joked I was having the hysterectomy so I wouldn't wind up in the Guinness Book for oldest pregnancy. Fast forward 10 years to kidney cancer, and my E+ was 98 or 99 %, P+ just a little lower. Apparently, it would take a nuclear weapon to kill off my estrogen.

  • concernedaboutresults
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    No LVI was mentioned in my reports, and my Nottingham grade is 1 with these characteristics: glandular/tubular differentiation 2, nuclear pleomorphism 2, and mitotic rate 1 = 5; grade 1. Invasive carcinoma 6mm in greatest dimension, ductal carcinoma in situ, solid and cribriform type, with intermediate grade. I don't really understand the difference in characterization between grade 1 and intermediate grades within the same 6mm mass tho. It would seem the grade was intermediate in the part that stayed inside the duct and grade 1 in the part that invaded outside of the duct, perhaps. The only other thing mentioned was that it was microcalcification. In the diagnostic ultrasound, it was mentioned that the mass did have internal blood flow. I don't see anything about LVI.

    Also, of note, the pathology report from lumpectomy says "pathological stage classification (pTNM, AJCC8th Edition): pT1b pNo (sn). This means my stage is 1a, right?

    Anyway my cancer was >99% ER+ and >90% PR+, and HER2- (1+).


  • concernedaboutresults
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    In 2013 or 14 my hormone tests from post partial hysterectomy showed almost no estrogen, progesterone, and testosterone at such low levels it shocked my GYN. My FSH was skyrocketed and she confirmed post-menopausal status at the age of 43 or so. I was only in there for low sex drive, and that is what we found out. The whole keeping of the ovaries was a big debate before the p-hysterectomy. I wanted them out, and my doctor wanted to preserve bone and vascular health. I lost that battle, only to have my ovaries give up 2 years later. Anyway, I decided not to do hormone replacement because of increasing hormonal migraine after 1 round of low-dose estrogen/testosterone pellets. It's always been a battle between migraine, hormonal birth control, and endometriosis/adenomyosis for me. Now I am juxtaposing all those debates against this hormone-positive cancer and wondering if it's just a lottery game, cancer, bones, vascular system. Which one is going to win in the end? It goes without saying, it might be a good idea to know how much ER and PR my body is even producing.

  • ctmbsikia
    ctmbsikia Member Posts: 757
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    No nodes involved, then yes you would be a stage 1A.

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    We al have blood flow to our tumors. That's why the damn things grow after all but good on LVI not being mentioned. They would have mentioned it if they had found it. In saying that I think your chances of having a low oncotype score is superb and with that it would make no difference whether you do an AI or tamoxifen. Tamoxifen will preserve your bone health and tends to have less side effects. And yes you're stage 1a on both staging symptoms. So all in all, it's great news in breast cancer world!

  • concernedaboutresults
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    Is there any point in seeing the oncologist for a second appointment without the Oncotype Dx results back yet? I don't see that we could do any treatment planning without it and thinking it would be a waste of time and a copay. Thoughts?

  • maggie15
    maggie15 Member Posts: 993
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    concernedaboutresults, It would make sense to reschedule the MO appointment for when your results are expected. Exact Sciences which does the Oncotype dx has a helpful customer service phone number. They don't promise a date but are good about telling you where in the process your sample is and an estimate of when the results will be released (your oncologist accesses it on their portal.) My sample was delayed in the hospital pathology lab and other people have had delays caused by insurance approval.

    Don't start radiation treatment until you have discussed the Oncotype results with your doctor. Since chemo comes before radiation and the test helps you decide whether to do chemo your insurance won't cover the cost (about $5,000) if you go out of order. I met a woman who got stuck with the cost because she didn't know (why would she?) and her clinic didn't catch it.

  • wondering44
    wondering44 Member Posts: 261
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    concerned,

    It looks like you have clean margins and no node involvement. That is fantastic news!

    The Oncotype should give the MO an indication if you need to talk Chemo or not. Is you MO recommending radiation?

    And to those naughty AIs….discuss with your MO your concerns regarding the AI and your previous surgeries. I'd say it would be a challenge to find an MO who doesn't recommend the AI or Tamoxifen. I am not too sure on the Tamoxifen if you are already menopausal.Your MO should definitely consider your concerns and discuss Tamoxifen with you considering your history. I am on an AI with the Zoldex to shut down the ovaries. I will say the AI experience has been about as harsh as the damned BC diagnosis. For me, it was about learning day to day (AGAIN) to find the right fit. So far, my second AI (Exemestane) is definitely better that my two rounds of trying Letrozole. I found with the Letrozole it was a crapshoot of more crap and I thought it would never end. I don't know that I would have continued the Letrozole with the SEs I had. The Exemestane for me is workable. I think every woman has different stories to share on their AIs. Some have luck. Some do not.

    I am glad to read you didn't do the HRT since you now have the BC diagnosis. I wish you luck on your Oncotype.

  • concernedaboutresults
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    My health insurance company assigned an RN, case manager. I spoke with her briefly a few days ago and she said she could help with pre-authorizations and coordinating care. I just received authorization for the release of health care information from my providers. I'm not sure what they do really and why they would need more information. Has anyone one here worked with one before?

  • marvies
    marvies Member Posts: 21
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    My oncotype results took a long time due to pending insurance approvals. I called my insurance company and they also assigned a case manager. He said he would help getting this approved but I was under such pressure since my radiation treatment was scheduled to start a couple days later that I called Exact Sciences directly. The rep was very friendly but said she was not allowed to release my results since the insurance company had not approved payment. I told her that I would just go straight to chemo then since my radiation therapy was about to start and without knowing my oncoscore I would rather do chemo first. 20 minutes later my BS called with the results.

    Give them a call and see if they can help. I wish you best of luck.

  • maggie15
    maggie15 Member Posts: 993
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    concernedaboutresults, Insurance company RN case managers work for the insurance company, not you. While they discuss symptoms, answer questions about your diagnosis, provide general health information and assist in contacting providers their job is to keep costs down as much as possible. They are not the same as nurse navigators who work for the hospital to coordinate care provided by several doctors and are not focused on the cost of your treatment. I'm sure there are some people who find the RN case managers helpful but I declined to use the one offered by my insurance company (it was optional.)

    I would speak to whomever ordered the Oncotype (your surgeon?) or their NP/PA to find out whether insurance approval was granted. If not, they can ask for an answer or start the appeals process. It might be that the insurance company would prefer a cheaper genomic test that is not your doctor's preference. All companies have clinical utilization management guidelines and have to pay for any one of the listed tests which your tumor characteristics qualify you for. I'm not involved with health insurance but over the past few years I have learned way more about how it works and my rights than I ever wanted to.

  • maggie15
    maggie15 Member Posts: 993
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    concernedaboutresults, I looked back at the insurance appeal that I filed for my Oncotype and the UM guidelines used by my insurance (Anthem BC/BS at the time) covered tumors .6 to 1 cm only if they were grade 2 or 3 for the IDC part, not if they were grade 1 as yours is. Different health insurance companies use different guidelines, usually MCG or InterQual and AIMS Specialty for expensive imaging and treatment such as chemo and radiation. I would ask your surgeon's office to check that your tumor qualifies based on your insurance; if it doesn't that might be the problem.

    Sometimes it is the insurance company being difficult. I was a slam dunk for the Oncotype with a 3 cm tumor and my surgeon's office had it preapproved. Afterwards they denied coverage telling Exact Sciences it had not been preapproved and me that it was not medically necessary (in the opinion of the reviewing physician who was a pediatrician.) They also retroactively denied my post surgical tumor pathology claiming it was a duplicate of the Oncotype. I won both appeals but it took about a year. I thought this was settled until 18 months after my surgery when the pathology was denied again because "we took another look and decided something had to change." Three months later that denial was reversed but my doctors and I have had to spend so much time dealing with this saga. I have won 7 out of 7 appeals in the past 5 years but have to watch my insurance portal like a hawk and am phone friends with all my insurance customer service reps.

  • concernedaboutresults
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    Thanks, everyone! I called to get more information on the case management service and leaning toward declining it. Also, the Oncotype Dx text was approved on 1/12, and I just followed up with my doctor to see if they had the results so I could adjust my appointment if needed. They do have the results back and I will be going in to discuss them next Monday.