Surgical Oncologist MSI in Orange County , Ca.?

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mischa1
mischa1 Member Posts: 9
edited June 2014 in IDC (Invasive Ductal Carcinoma)


I just got a new diagnosis for IDC; need to expidite determination of hormone blocker eligibility so I do not have to reschedule hip replacement on Aug. 27th. It's hard to work w/ MSI authorization procedures to find oncologist/ surgeon. Thanks.


see update :Bottom of thread Nov. 30th 2013

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2013

    Have you had a biopsy? That gives you an initial look at the characteristics of your bc. Final path report is done after lumpectomy or mastectomy. What is MSI?

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  • mischa1
    mischa1 Member Posts: 9
    edited August 2013

    Yes  I have had biopsy showing "cancer"; no definitive info yet on whether homone- blocker therapy is suitable. I am told results are "pending" --does that mean an oncologist must order this test? What is a Path report?

    MSI is for low-income folks not ordinarily eligible for Medi-Cal. I would be less in a hurry if I hadn't already worked for 2 years to get the hip replacement date. I am too young for Medicare;  not enough time to apply/ qualify for  Medi-Cal's BCCTP program.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2013

    Hi mischa,

    Path is short for pathology. The pathology report, which confirmed your cancer, should have contained info on your ER, PR and HER2neu receptor status. I don't think an oncologist orders those tests. I believe they are part of the analysis of the sample taken during your biopsy. You should also ask for a copy of the path report so that you have this information at hand. As to a hormone blocker, that becomes part of the treatment decision after surgery (lumpectomy or mastectomy) not as the result of a biopsy. The biopsy looks at a sampling of your tumor and is a starting point. The results of the path report after surgery drive treatment decisions, not biopsy results.

    Caryn

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  • mischa1
    mischa1 Member Posts: 9
    edited August 2013

    Thanks, Caryn! This is more information than I can get out of my primary--I guess you have to know what questions to ask...

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited August 2013

    Sorry to hear you're going through this. I can't imagine what it's like to be lined up for one surgery and then get a BC Dx. How unfair. 

    You raised some good questions. Can you get a referral from your primary care doc? This MSI page (below) also had some phone numbers. If you can, try to get a referral to surgical oncologist (someone who only does cancer surgery). Sometimes they have regular surgeons do it, but it's nice to get expertise. 

    http://ochealthinfo.com/about/medical/msi/faq

    FWIW, my biopsy path report gave me an initial diagnosis, but some of the characteristic of that report came later. (basically, they had to re-do the ER/PR, HER2 part) so there was a period where I didn't know. Regardless, this is considered a preliminary report and after surgery they will study the complete tumor have more info then. That's when decisions are made.

    Sorry your primary doc isn't helpful about cancer, but realistically, they aren't experts. There are other professionals you can help you: (1) a nurse navigator or nurse educator (she can explain all the medical info; she was the first one who reviewed my path report with me, not my PCP). Mine shared an office with my surgical oncologist. (2) social worker. There is usually one assigned to each oncology department. This person can help you with the logistics and other things, such as working out issues with your insurance or even other issues, like if you need to arrange for someone to drive to you to/from appointments.

    Why does your hormone receptor status influence your hip surgery???? I'm not clear. But...is there any chance you may need chemo? I'm no expert on this, but I imagine hip replacement has a long healing time and I wonder if they might prefer for you wait and do if after chemo, if you need chemo at all.

    Also, I don't know the coverage under Medi-Cal's BCCTP program, but if it's more comprehensive, or gives you access to more doctors, it might be worth trying to get the going too. You probably have this info but if not, here's a link

    http://files.medi-cal.ca.gov/pubsdoco/bcctp/bcctpbull_20020115.asp

    Good luck. Seems like a whole lot to be going through at once.  Hope you're able to find some time to day to rest. (take a few deep breaths?) Sending you warm, healing vibes from Northern California! ;)

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  • mischa1
    mischa1 Member Posts: 9
    edited August 2013

    Thanks so much for the info! It's not that my Primary doesn't know, I think she just has poor English skills and things get lost in translation. I just got the rest of my Path report and am going to try to decipher with the help of several local friends who have gone through this. The report seems to indicate the tumors are hormone receptive.  I just have to gather as much info as possible before I tell my orthopoedic surgeon--I can imagine he has gone through having a patient like me before. What I understood from the radiologist, is hormone therapy or some other thing she said) can sometimes arrest tumor growth, thereby enabling me to get the hip done and deal w/ the breast in 6 months.... but maybe not.  Hip takes 3- 6 mo. to heal up. What a choice!

    Referrals going through MSI are in process; South Orange County is affluent(except for me) and doesn't have many welfare doctors -- I would have to go through application process for Medi Cal  BCCTP. If I cannot get results w/ MSI, that's where I'll head next, especially if I have the grace period from hormone blockers, if I understand correctly. I really DO NOT want chemo, although if it is truely needed I would do it. I know of 3 women who just had surgical removal, no chemo, no radiation and they are fine.

    And thanks for the NorCal vibes-- I lived in Humboldt for years... miss it and mi amigas so much!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2013

    Mischa,

    So glad you got more information. If you have any questions about the path report, post them on this forum. We have many members (not including me) who can interpret these reports as well as many doctors. I understand what you're facing with your hip,replacement but treatment decisions/plans are not driven by biopsy results. They are, if you will, the tip of the iceberg. Sometimes, the path report after surgery is quite consistent with the biopsy pathology but sometimes it reveals things that were not apparent from a small sample. I am not sure that you would be started on an anti-hormonal treatment based solely on a biopsy sample. I've never heard of this, but that doesn't mean it isn't possible. I hope you can consult with an oncologist soon about your unique situation. Best wishes to you from the Silicon Valley area.

    Caryn

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited August 2013

    I'm glad you have supportive friends who want to help, but I'd suggest getting a professional to explain the path report, this week, if possible. If I were in your shoes, I'd call and ask to have another appt with the diagnosing radiologist to go over the now-complete path report. If the scheduling person gives you a hard time, say you were confused by a couple of his statements and have follow-up questions. If needed, say that you're having a hard time getting an MSI referral to a surgeon. Also, see if they can give you a referral to a nurse navigator or nurse educator who can explain this to you.  My diagnosing radiologist was great, but once I heard the bad news all I heard was blah blah blah cancer blah blah blah. So probably everyone needs to hear this info more than once. BTW, this website has information about diagnosis. It's a lot of information, so I would still suggest you talk to a professional who can prioritize what's most important to know right now. http://www.breastcancer.org/symptoms

    I think you're right, that your orthopedic surgeon has had other patients with cancer. My docs seem to have a lot of experience managing multiple health issues at once. I've noticed, though, that the cancer docs hold the trump card. When managing other issues (in my case, bone health) the non-cancer docs repeatedly say, "make the decision based on your cancer risk, and then we'll manage the rest."  When I relayed that to my medical oncologist she said that's often the way it works, even when patients have serious issues, like potential heart problems.

    FWIW, I've never heard of someone being on anti-hormonal meds for many months prior to surgery. (I've heard of pre-surgery chemo and taking anti-hormonals in the hope of preventing BC)

    Can your friends help you fill out the Medi-Cal BCCTP paperwork? My (very limited) understanding is that it covers patients going through BC Tx, so it seems like the system should (hopefully) go quickly, since patients need to make Tx decisions.

    I got a lot of free help from the local cancer support center. Here are some options in Orange County; there may be more options.  Mine offers a service to help you prepare for doctor's appointments (become educated and sort through the list of questions, etc). So perhaps there are staff members who have experience with your issues.

    http://www.myoc3.org/Events-Calendar/Support-Group.aspx

    http://ochealthinfo.com/phs/about/promo/ewc/support

    As an FYI, if you have a large cancer center nearby, you may be able to receive other support services there, even if you're not being treated there. (they won't help you navigate your insurance issues, but can offer other support services during your Tx). I think UCLA provides that, but it's a long drive from OC. But FYI in case there are other large cancer centers nearby.

    Good luck with all this. It's a lot of info at once (plus the overhead of navigating the health care system). Hope you're able to take a break for a little while today.

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  • mischa1
    mischa1 Member Posts: 9
    edited August 2013

    Thanks for alll the feedback, everyone!

    I did get to speak w/ an oncologist who straightened me out re priorities and hormones. Just as there is so much to know, there is also too much to mis-understand! So, he will hook me up w/ a good surgeon for BC and advised to ABSOLUTELY put off the hip replacement for at least 6 mo. to deal w/ the possibility of 3-4 mo. chemo after a month or more of all surgery/ etc. Explained what the best and worst case scenarios might be. Knows his way around MSI. And will order a bone scan, because of the hip issues, to see if there are 'Hot Spots' anywhere else in me. Jeez! just when I thought I was getting back on my feet!

    I'm guessing there's some big cosmic reason I got so close to the hip thing to have it yanked out from under me by this... or not!

    In deep appreciation for your thoughts and help, sisters----

    Mischa

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2013

    So glad that you found a good onc. Though disappointing, you're right about there being some reason for having the hip replacement put off. All the best.

    Caryn

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  • larst
    larst Member Posts: 35
    edited August 2013

    Hi Mischa, I can't help with the MSI, but I've been going through similar hassles dealing with my HMO. Everything has to be authorized, and I've found not many doctors accept my HMO.  I'm also in South Orange County.  What hospital is your oncologist associated with?  I had my mammo and biopsy at Saddleback but my surgeon works out of Mission Hospital in Mission Viejo. 
     

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  • mischa1
    mischa1 Member Posts: 9
    edited August 2013

    The oncologist is Praveen Sivakumaran at Compassionate Cancer Care in Fountain Valley. Not sure about admitting hospital. Who is your surgeon? I do not know the name of the surgeon the oncologist is recommeding yet, but I  should find out this week. Seems like an awful lot rides on the sugeon's opinion and availability.

    It's all a big  new adventure into the medical universe for me--- I have always been the kind of person who only went to the doctor when something was obviously wrong, not this hidden occult stuff. I am trying to trust the process and be grateful for the improving statistics re survival w/ this disease...early detction seems to be the largest factor.

    Good luck to you!

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  • larst
    larst Member Posts: 35
    edited August 2013

    My surgeon is Stephen DeSantis with Saddleback Valley Surgical Group.  You might get a surgeon in the Fountain Valley area if that's where the oncologist is.  Let us know how everything goes.  Good luck to you too!

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  • Sueper1grl
    Sueper1grl Member Posts: 5
    edited September 2013

    Glad to find others in Orange County.  I am new on here.  I started at Saddleback which was great and my Surgeon is at Hoag in Newport.  I'm looking for Plastic Surgeons.  Seems like many don't take UHC.  I have my surgery scheduled for next week and I am in Panic mode because I only meet one PS surgeon and feel I should at least consult with 2.  It may be too late since there needs to be a pre auth. not to mention it's all last minute.  If I just have the lumectomy and no cosmetic surgery I'm scared I could have made a bad choice.  I'm also getting the IORT radiation and unsure if I will get shrinkage.  Any helpful info will help....

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  • larst
    larst Member Posts: 35
    edited September 2013

    I really like the plastic surgeon I'm going to. I haven't had my surgery yet but I've heard from several women who had him do their breast reconstruction and they all really like him.  His name is Allen Doezie, M.D., and his office is in Ladera Ranch.  I know he performs surgeries at Mission Hospital and I think also in Newport, but not sure if it at Hoag.  I hear Hoag is excellent! 

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  • HBwoman1
    HBwoman1 Member Posts: 14
    edited September 2013

    I was  diagnosed with invasive ductal cancer.  It is estrogen sensitive. The oncologist that I met yesterday and the surgeon recommened  invasive radiation.  A balloon is inserted  in the space where the tumor was removed and stays permanetly for 7 days, it has 6 leads that come out and you go twice a day for radiation that is delivered by some robot through these tubes (leads).  CT scan every morning then procedure then go back in afternoon for another round of radiation.  I do not think I can lay there with all these leads  hooked up to my body and the "seeds" inplanted in the tubes.  I am thinking of going the regular route of external radiation.  Anyone had the internal radiation.  Was reading it is not known the long term effects of internal.  I was never offered the other option which does not make me happy..

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  • HBwoman1
    HBwoman1 Member Posts: 14
    edited September 2013

    I am in Orange County, Ca and having surgery at Orange Coast Memorial and radiation in Fountain Valley

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2013

    HBwoman1,

    Search the radiation forum for IORT. You may get more info and a better response on threads dealing specifically with radiation. Good luck to you.

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  • mischa1
    mischa1 Member Posts: 9
    edited September 2013

    The plastic surgeon referred is Hisham Seify in Newport Beach, who coordinates w/ my Hoag Newport surgeon, Lisa Guerra. Everyone is really great! My surgery has not been scheduled yet but I have had consultations and they've submitted for authorizations, which are a bit slow, but like I said, I am learning to trust the process. We are actually really lucky to have so many  professionals around here-- many take an assortment of plans-- we'll see how all that looks moving forward w/ Affordable Care Act!!-- I understand the ratio of women diagnosed and treated for breast Cancer is higher in Orange County than the national average(1 in 8) probably because of more insured people and better diagnostic services.

    Hope everyone is doing as well as can be expected, thank you all for your contributions to the forum!

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  • Iturley
    Iturley Member Posts: 1
    edited September 2013

    Hi my Dr is Seify as well😘❤️. I love him. Can you tell my who your primary dr is?? I'm changing in February.

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  • hbcheryl
    hbcheryl Member Posts: 5,113
    edited September 2013

    I had my surgery at Orange Coast Memorial 5 years ago but my surgeon has since retired, I also had a 2nd opinion consult at Hoag with Dr. Snyder who I really liked and my oncologist was Dr. Tetef in Irvine.  I agree we are very lucky to have so many good doctors so close at hand, my primary physcian had offered to send me up to UCLA but I just didn't think I could deal with the up and down the 405 and I'm glad I stayed local.

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  • mischa1
    mischa1 Member Posts: 9
    edited November 2013


    Hi this is Mischa reporting back in on November 30th 2013. Everything went really well: I am so lucky this was caught early and dealt with! I ended up have a skin- sparing mastectomy right side with tissue expander put in at that time. Healed up for month while on pins and needles worrying about results- there was a micro-metastasis in one of the 3 lymph nodes removed, and it took a longer time that usual for oncotype to get done- score was 18- right on the cusp between low risk and intermediate. Surgeon and oncologist agreed no chemo would be required because of other factors- fully removed breast tissue, size of tumors-- all small, but a cluster of them-hence mastectomy; HR status, began taking hormone blocker-Arimidex. (so far, no weird side-effects from that, although I do already have bone thinning in my femurs.)


    So all in all-- no chemo or radiation, for which I am so grateful. I am in process with reconstruction-- done last Monday: implant in cancer side and a "lift" on my healthy breast, using my own tissues-technically a reduction-- I am thrilled to have a younger-looking bust! Still have to get a nipple and a little more fat transfer to complete the implanted side.


    The most difficult part of all of this has been going off the anti-inflammatory I take for hip pain for 10 days before each surgery, as it is an NSAID which can cause bleeding. Unbelievable Pain! throws my lower back out-- can barely move-- seems like the "good" hip I have been relying on too much is now feeling very much like the hip that had been scheduled for replacement-- so my next journey is to find some who takes the poverty-payment plan and does bilateral anterior approach hip replacements...I feel like each experience prepares me for the next.


    Through all of this I have had the unwavering support of family and friends, for which I feel eternally grateful. This forum has provided me with all the extra tidbits of information, knowledge and "inside info" from those who know-- all my sisters out there dealing with this disease.


    Best of luck to everybody--


    Love, Mischa

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