First Steps?

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Ciarratron
Ciarratron Member Posts: 24
edited July 2020 in Just Diagnosed

Hi Everyone,

I know I'm ALL OVER the dang place on this forum - I was just diagnosed back on Monday, and have a question about next steps to treatment.

I was originally informed by my PCP to contact and make and appointment with an oncologist before a breast surgeon. But now she is saying I should have made an appointment with a surgeon first. I'm not being given much information in terms of a plan, but I don't know whose responsibility that is.

My doctor DID recommend a surgeon to me, but when I called the office, I was told that they only do bariatric/lap band surgery. So I'm honestly not that confident in my doc's advice at this point.

I have my oncology appointment Tuesday - I think I'm a little lost here on what I should be doing. I feel like I'm navigating all of this with my head cut off, while also being under tremendous pressure at work to maintain my normal workload (I'm still in the office, as we are "essential"; my boss knows what's going on, but I don't think he really gets it, ya know?). I'm just a tad bit stressed and distracted!

Should I make an appointment with a surgeon now and see them before an oncologist? For some reason, I was under the assumption that an oncologist would be the first step in figuring out treatment.

Thank you all so much - C

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2020

    Hi!

    Are you being treated as though you are triple negative? If so, the first step of your treatment plan would be chemotherapy, which means you'll need to see your oncologist because that's who manages chemo. If you're going to do surgery first, then you'll need to see your surgeon. Of course, you'll be getting surgery in either case, so seeing your surgeon now isn't a bad idea. I saw my surgeon first but did chemo first. Good luck!

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  • Ciarratron
    Ciarratron Member Posts: 24
    edited July 2020

    ElaineTherese,

    I have NO idea - I haven't gotten any information on how they're treating it. It's single-hormone receptor positive, so it could be treated as TNBC, but I don't know. Would I ask my primary?

    Sorry...communication thus far on all of this has left a lot to be desired, and I have way more questions than I have answers.

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  • Beesie
    Beesie Member Posts: 12,240
    edited July 2020

    With your diagnosis, since chemo prior to surgery might be considered, it doesn't matter who you see first as long as you see both the surgeon and MO before you make your decisions and have surgery.

    So, see the Medical Oncologist on Tuesday. And find a breast specialist, not a surgeon who does everything. The MO might be able to recommend someone, and in fact you can call his/her office and say that you are seeing the doctor on Tuesday and also need to line up a breast surgeon - is there anyone they could suggest?

    Oh, and you can leave your PCP behind now and deal exclusively with the specialists

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2020

    Hi!

    Do you know what percentage of your cancer tested positive for estrogen receptors? If it's below a certain amount (say 25%), your doctors might treat it as though it is triple negative. Triple negative cancer usually means chemo. If your doctors decide to treat it as estrogen positive, they could send your cancer out for an Oncotype Test to determine whether or not the benefits of chemo outweigh its risks. If your cancer scores a low oncotype number, then it's no chemo for you. So, that's an important issue to resolve.

    Beesie is totally right -- your PCP is useless at this point. It's time to discuss things with the experts, so her suggestions about your MO appointment are spot-on

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2020

    Ciarra: I concur - forget about the PCP. The oncologist (MO) usually drives the bus, so it's fine to see him/her first. And IF YOU LIKE HIM, then it's a good idea to ask for a breast surgeon (BS) recommendation. Be sure to pick someone you feel comfortable with and can talk with.

    Even so, you may want a second opinion. I can't remember where you are. And I may have posted this for you on another thread - but here's a link to find an NCI cancer center near you.

    https://www.cancer.gov/research/infrastructure/can...


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  • Ciarratron
    Ciarratron Member Posts: 24
    edited July 2020

    Beesie, thank you - that's excellent information. Please forgive me, I only just remembered you replied with almost that exact info on one of my earlier threads. I'm all over the place! I'm sure they could suggest a surgeon. It's a UCLA cancer center, and there are surgeons in the same building.

    MinusTwo, thank you, too! I did check into the NCI centers in LA earlier this week, and it turns out there is one a few miles away from me. SO helpful.

    And ElaineTherese, my ER+ percentage is 27%, so I suppose it could go either way. I DREAD chemo and those side effects I've read about. I've come to terms with losing my hair, but not with having constant constipation. Not excited about that at all!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2020

    Cierra - many don't have constant constipation, but here's a thread that can help if you do.

    https://community.breastcancer.org/forum/6/topics/...

    Personally I had no constipation except from the opioids after surgery. I had constant diarrhea with chemo - probably due to Perjeta which you won't have. I actually lost 60 lbs, which I didn't need to lose.

    Try not to get too far ahead of yourself.

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  • Ciarratron
    Ciarratron Member Posts: 24
    edited July 2020

    MT, trying to stay grounded - appreciate the reminder on that one.

    Preparing for the worst has always been my area of expertise.

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  • Runrcrb
    Runrcrb Member Posts: 577
    edited July 2020

    others have weighed in with good advice. Take a deep breath and start a list of questions for the oncologist. If he or she can’t speak to you in a way you understand, keep searching for one. The same will be true for your breast surgeon and your plastic surgeon if mastectomy/reconstruction are in your future. Do not assume you will have all of the side effects you read about. The women who suffer the most are on message boards like this - many don’t have debilitating side effects. I found radiation harder than chemo.
    Do you have a friend who can take notes and help make sure you ask all of your questions? I took a friend to all of my initial appointments and she took all the notes. It helped to have some one else writing while the doctors and I talked.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited July 2020

    It's not likely that anyone can have another person with them for appointments now. But you can ask your doctor if it's okay to record everything.

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  • Ciarratron
    Ciarratron Member Posts: 24
    edited July 2020

    AliceB, you are right. The receptionist was very clear on the COVID-protocol which I appreciate. She did say I could FaceTime with someone if I wanted to during the appointment - My boyfriend wants to listen in, in lieu of being physically there. Technology is awesome.

    Runrcrb, I’ve done a lot of researching this oncologist. Everyone who’s had him seems to love him. Fingers crossed - If you’ve seen my earlier posts, you’ll know my experience with medical professionals handling this has been...let’s just say underwhelming so far.

    JavaJana, I’m so happy to hear you’re almost finished with chemo 😊 Looks like you’ve had quite the journey. Thank you for the advice...I’m so eager to have a plan in place and put this awful month of anxiety and waiting behind me.

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  • Ciarratron
    Ciarratron Member Posts: 24
    edited July 2020

    Hey all, just updating.

    After some trial and error with my insurance, I had my initial oncology appointment cancelled the day before because they didn't accept my medical group. I was referred to a different oncologist, which was also denied by my insurance. The third one stuck, and I had my appointment yesterday.

    She made a referral for a surgeon and for an MRI and some bloodwork. I was informed that I probably wouldn't be able to get any of them for another month and a half "because that's just how the system works". Does that seem right? I see stories from other ladies here in the US who've been able to start treatment within a few weeks. Maybe because of COVID? It's already been almost 2 months since I started this whole thing, so, naturally, I'm freaking out. Waiting until September for any kind of treatment seems ridiculous.

    I asked her about my tumor grade (3). I've read that Grade 3 is significantly more aggressive than other types, but the oncologist kind of brushed off my concerns, and told me that it's not. My lump has definitely grown, and waiting another month a half is making me panic. I told her that I was experiencing pain in my left breast, and that it's in my shoulder. She didn't have much of a reaction and set me up for an appointment in 3 weeks.

    I'm still waiting for my authorization to get a second opinion to go through, and I'm totally sick of waiting. I'm thinking about upgrading my insurance to a PPO, but I don't know if that'd help. I just want this thing out of me.

    I've had a REALLY bumpy road for me thus far, and I just want decent care. I am not at all confident in anyone's ability to provide it.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2020

    Yep, maybe it's because of Covid. I saw a surgeon within days of my diagnosis, and saw an oncologist the week after that. Everything went quick quick for me, maybe because my tumor was big.

    I do have a PPO, and it helps. Hope you can get a second opinion soon! How frustrating for you. Ugh.

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