Second Opinion Surgeon on Mon

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Frill
Frill Member Posts: 311
edited November 2015 in Just Diagnosed

6 months ago I had LCIS diagnosis. There is no history of cancer period in my family so honestly I was a little upset but didn't worry. Two weeks ago I went in for another mammogram and the dr wanted MORE biopsies- I already had 5 markers. One came back positive for invasive lobular carcinoma. The dr said he didn't understand, go get a second opinion. He is getting a second opinion. I'm kicking myself for not immediately switching to the huge cancer center here in Houston 6 months ago. Friday I went there for mammogram and ultrasound. I see the surgeon Mon. I'm freaking out and I feel so shallow. I screamed at the first (male) dr that at 46 I still had perfect breasts and there was no way he was touching them much less saying he wanted to cut one off, put me on hormones to age me 20 years. I dealt with traumatic brain injury and went to law school and then I had two "giant" aneurysms. I never complained. By God, I'm complaining. I'm scared. He even said - do internet research- which my neurosurgeon forbid. At least it got me here. I am 75% ready to do nothing. I'm babbling - it's stage 1 I think I remember him saying less than a cm. Fri radiologist confirmed lymph nodes clear, which previous dr said he couldn't do without surgery.

Tell me please I'll be me after

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2015

    Frill, welcome to BCO. We're glad you found us but sorry you had to.

    You'll sure get responses from other members here soon but, in the meantime, you can read helpful tips on Getting a Second Opinion at the main Breastcancer.org site, including why, where and when to get them, and what to expect.

    Best wishes, and please keep everyone here updated on how you're doing. We're all here for you.

    The Mods

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  • windingshores
    windingshores Member Posts: 704
    edited October 2015

    hi Frill,

    I am glad to read your tumor is under a cm and nodes are clear. It is a huge shock at this point. When you meet with the surgeon at least you will start to formulate a plan. Things get better when you can take action.

    I can understand some of your feelings. My daughter had a brain injury a year ago, and then procedures for arterio-venous malformations last spring (I had one mastectomy, she had brain procedure, then I had the other mastectomy and she had another procedure- we took turns!) so I know how you feel. You have been through a lot and it doesn't seem like the universe is being very fair.

    My daughter finally got better enough to go to the grad program she was headed for and now has mono. We were feeling upset about this sequence of events but after reading your post, realize how trivial that is.

    Hope you like your surgeon on Monday. In the meantime, lots of Netflix and if you need it, get some Klonopin or Xanax or something to tide you over :)




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  • Smurfette26
    Smurfette26 Member Posts: 730
    edited October 2015

    Sorry you have found yourself here Frill. I'm fairly new to all this too; having been diagnosed in September. I have ILC too. The imaging showed my tumours (I have a multifocal cancer); were less than 1cm but they were actually quite a bit larger when I had surgery. This is often the case with Lobular. I had no palpable lumps and the surgeon couldn't feel any swollen nodes prior to surgery. My nodes looked clear on the ultrasound. He removed 4 nodes during the Sentinal Node Biopsy and one has come back positive for cancer. I'm 51 and had what I considered nice, perky breasts. Gravity had been kind but unfortunately cancer wasn't. Mastectomy was my only surgical option and I am coping both emotionally and physically. It is a really difficult time. Be kind to yourself. Get something to help you sleep. I know that made a huge difference for me. Sending you love and light. Donna.

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  • Frill
    Frill Member Posts: 311
    edited October 2015

    Thanks, ladies. :) I hate feeling so pessimistic. With all my other stuff, I've just said, "Let's get through this and move on." But brain surgery is a little hole in my leg. That seems *easy* to have a great attitude through compared to this.

    I just am really worried about having a confrontational attitude with the surgeon, which I immediately adopted with the other surgeon, mainly because he was a man, at least at the time that's what I thought. The surgeon Monday is a woman. The radiologist I spoke with on Friday was great and was very positive.

    Lol, I told a legal pad in with me to my appt to write down information, and I just had to put everything down lest I throw it or the pen at the poor man. I don't want to start off on the wrong foot with person and the team I'm actually going to stick with. Yes this is the second opinion but I'm sticking with MD Anderson.

    Luckily I already have Xanax and Klonipin. Unluckily I have a huge filing due on Monday, so I have worked yesterday as much as I could. Shortly I'm driving back to Houston. Surgeon is Monday at 8, then back to the office to get this filing finished, lunch with my boss and another lawyer about this case. Then I'm driving 4 hours home. Not sure how the post surgeon anything is supposed to go. This is federal court, I can't call the coordinator and play the C card.

    I'm babbling. My real issue is - how do I think of my surgeon as being on my side instead of as the person who's stealing everything from me - cutting me, making me taking poison, . . . . and what are the things I should be asking, instead of, "Can we schedule this after X trial because I'm busy?" I drove my neurosurgeon crazy with that, but at least it was a running joke. His busy schedule versus mine.

    PS I'm not as shallow and self-centered as this sounds. In fact, everyone around me keeps forgetting about it because I won't talk about it. My dad doesn't even know.


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  • marijen
    marijen Member Posts: 3,731
    edited August 2016

    ok now I know why doctors want to know what work I do, because treating a lawyer comes with liability. Give me the money and don't sue me :)

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  • Frill
    Frill Member Posts: 311
    edited October 2015

    Lol, yeah, I hate telling a dr I'm a lawyer. I'm always quick to say, if I even HAVE to say- I'm in corporate litigation, I don't know*anything* about med mal. In fact, I would never ask a dr to say something bad about another dr for that reason. I wouldn't say something bad about another lawyer unless it was malpractice for me not to.

    Sondreading tomorrow.

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  • Frill
    Frill Member Posts: 311
    edited October 2015

    Well - this week I have genetic counseling and an MRI on Tuesday. Surgery is scheduled for November 19. Exactly how extensive it's supposed to be - I don't know yet.

    My new dr/surgeon is a woman and awesome. She sat with me and literally showed me - if we have to do this, you'll have a scar for awhile here, if this, it will look like this. She didn't tell me I would age 20 years and be permanently disfigured like the other doctor. I'm scheduled for a visit with the plastic surgeon, in a couple of weeks.

    I'm wary about the MRI because the other doctor didn't see anything 6 months ago. What else is it going to show? But I'll do what they say, this is one of the leading cancer treatment centers in the country.

    I'm digging through the "what to have on hand before and after surgery thread." What I thought was crazy is that even if I have a MX, I'll only spend the night in the hospital? The dr said, one day after release, then I can travel back home.

    The plan after that is - so far - 2 weeks recovery, then 4-6 weeks of radiation. I guess I may have to have a second reconstructive surgery after that depending on what radiation does...

    And yet, all through this, the demon through this seems to me to be Tamoxifen. I just don't want to do it.

    Thanks for everything, ladies.

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  • Suetois
    Suetois Member Posts: 20
    edited October 2015

    Hi, Frill. I just wanted to say that I'm glad you're happy with your doctor and that she's giving you such solid information. I also wanted to say that I did 5 years of Tamoxifen therapy. It wasn't too bad. I did gain a little weight, but most of that had more to do with my diet than the medication I think. The only real problem for me was having to deal with hot flashes. They were pretty frequent and intense and went on for the entire 5 years. It got old. However, what's a hot flash compared to having cancer? I felt safer because of the Tamoxifen, and the peace of mind was well worth the inconvenience. Good luck with your decision.

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  • Frill
    Frill Member Posts: 311
    edited October 2015

    Thank you. My first doctor made it sound like such a nightmare, but I could deal with hot flashes. I mean, it would suck, but still.

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  • Frill
    Frill Member Posts: 311
    edited October 2015

    Tomorrow is MRI and genetic testing/counseling. Maybe this will be the day I figure out what surgery, or start deciding which one.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited October 2015

    Good luck, counselor! I’m retired except for occasional pro bono, mandatory in IL in order to retain licensure which I’m not ready to give up. (I keep my law license current mostly to be in the Chicago Bar Assn. musical, which until now I’ve done every Dec. since 2002. Didn’t want to give a half-assed performance worn out from radiation treatments, so I decided to work behind the scenes this year). I also tell doctors that the only med-mal I’ve ever done was defense, early in my career when I was representing a state hospital and the Dept. of Public Health as an Asst. AG for the State of IL. They relax even more when I tell them my husband’s a cardiologist.

    I was given the choice of MX or LX+radiation. I am participating in a “decision-tree” trial run by the Mayo Clinic (with which my hospital’s affiliated along with the Univ. of Chicago). Part of that was watching a slide show setting out statistical risks of recurrence for each option. Though MX halves the risk of recurrence compared to LX+rads, the actual numerical probabilities are nearly equal--and life expectancy exactly equal. I’m pushing 65, 10 years past menopause, so my situation’s a bit different: my estrogen levels are already low and AI’s probably wouldn’t lower them abruptly enough for side effects to be too pronounced. I didn’t get an MRI but I did get genetic counseling (and Oncotype DX testing of the tumor, which score was low enough to confirm that adding chemo would confer almost no benefit but pose significant risks given my age, antibiotic allergies and knee implants that would have to be removed in case of systemic infection). Genetic testing ruled out BRCA-1 and 2 mutations. (No family history, but I’m Ashkenazi--so the genomic testing company billed my insurer and me exactly zero).

    Where in Texas do you live? M.D. Anderson was recently rated even higher than MSK, Dana-Farber, Lynn Sage or Fred Hutchinson for cancer care. Does it have satellite affiliates in your city where you can get your RT (and if necessary, chemo)?

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  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited October 2015

    Frill, glad you switched doctors, the first one sounds like he didn't know very much - did he even specialize in Breast cancer? Don't worry about the Tamoxifen. I have been taking it since April, and I have zero side effects. Chemo did put me into chemo pause at 48, though frankly I don't miss my period much. Only 25 percent of women have SEs from Tamoxifen, and a smaller percentage are severe SEs.

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  • Frill
    Frill Member Posts: 311
    edited October 2015

    My first doctor was the head of the "breast dept" or whatever they called it at that clinic. I just can't imagine having stayed and getting treatment with him. I'm so angry at him.

    Anyway, Tuesday was genetic testing and an MRI. Wednesday I was crying so much I couldn't stay at work. Usually work is how I deal with stress, now I just am frozen, that's all I can do to explain it.

    BF keeps telling me to stop expecting the worst, that I don't know what surgery I'll have yet and not to worry about it. I'm not "worried," I want to know. I meet with the plastic surgeon on Wednesday, I guess I'll get more information then? Ugh. The way my online schedule looks now, I'm not deciding anything till the day before. That's not going to work for me. Because for one thing, I would have a separate list for stuff to buy depending on what type of surgery I'm having, right? Lol, I keep trying to find something funny. There's just not a lot this time. (With the aneurysm, the dr referred to it as Godzilla sized, we called him Dr Nick)

    I got out my Healthy Healing book and ordered a bunch of herbs and vitamins that are supposed to be good for breast cancer and it goes into hormone specific, like don't take X if you have estrogen sensitive cancer - I know to be careful because of blood thinning and/or clotting issues too, especially before surgery (lol, brain aneurysms keep me on my toes lol). No hormone meat, lots of green salads, fruits, stuff I was doing until this last year.

    BF wants to be able to comfort me and it's so hard. I feel bad. Last year when my mom passed away - yeah, believe me, that's just the tip of the last effed up 18 months or so iceberg - I cried only in the shower or in the car.

    Still freaking out about taking hormones, and maybe it's because of this doctor again. He said it would age me 20 years, that because I'm pre-menopausal, the side effects would be very rough, that I would gain weight. Oh, and that radiation would make my radiated boob fall. He has made this experience so much worse than if I had never ever talked to him.

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  • Frill
    Frill Member Posts: 311
    edited November 2015

    Well, my MRI results came back today. My quick meeting with the plastic surgeon turned into a MRI biopsy and another mammogram. Evidently there are two "satellite areas" that have to be biopsied. I'm frustrated because I had no notice. I'm scared. The person who was supposed to go with me flaked out.

    From what I could read online, lumpectomy may still be ok but it will depend on these test results. And there's still the hormone bs. I've seen enough in people's sigs to recognize ER+ etc etc. I'm ER+/PR+/HER2- so they're going to try to shove that stuff down me. I don't mean to be so negative, I'm in a bad place right now. I'm alone, upset, and just at the end of my rope.

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited November 2015

    It sounds like you're in the process of changing facilities, teams & docs. So I won't make comments/suggestions about your old team, etc.

    I wonder if the person who ordered the MRI told you why they wanted to do the test, and what various results might mean for your treatment plan? It sounds as if they might not have. Or at any rate, that you might not have taken it in. That's an important thing to know about the various tests proposed by your docs. What do you expect you might learn? What might those results mean for the treatment plan?

    For example, I still remember some of the things I was told about my pre-surgical MRI. That each screening/scanning modality was capable of spotting different kinds of lesions. I'd already had mamograms and ultrasounds. And my surgeon wanted to know about other potential "trouble spots" before surgery, so was ordering the MRI. She told me that if she saw additional "things," that she might want an additional pre-surgical biopsy, or she might simply need to change her surgical plans.

    The information communicated in the various medical consultations is sometimes not communicated well, and other times, it's simply hard to focus and take in all of the details when the subject is your cancer! Many docs will allow you to record your consultations with them. It can be very helpful to re-listen, take notes and formulate questions for your docs at your leisure.

    About that rope? "Tie a knot in the end of it and hang in there." When the treatment plans seem to change day by day and it all seems to come out of the blue...it really is hard to take.

    My very best wishes to you!

    LisaAlissa


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  • Holeinone
    Holeinone Member Posts: 2,478
    edited November 2015

    Frill,

    Sorry you are dealing with this, never easy. Try not to think about the hormone pills. Get your surgery scheduled, take it one step at a time. A lumpectomy, generally is minor compared to a mastcetomy & reconstruction. My lymph node surgery was the most difficult part of healing process. Chemo was a nightmare, but hopefully you will not need to do it.

    I hate taking Arimidex. I understand why many ladies quit after several months. If I was stage 1, I would consider skipping it.

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  • Frill
    Frill Member Posts: 311
    edited November 2015

    Thank you, thank you, LisaAlissa and Holeinone. 6am - 3 meltdowns just getting to work, lool. This is just soooooo not me. Once in a deposition, they asked the client why he gave a woman $10k. He said, "Well, she called me crying." etc etc. These depos had been a long series of different witnesses, so the lawyers by this point knew each other very well. At a break, one of them said, "I bet Frill never called a guy crying like that."

    I feel like I need to put on my big girl panties, but I can't find them. I'm not sure how to get in control of the situation.

    Last night my boss, the MASTER of the deposition, said that he had a hard time getting straight answers out of the doctors. He just went through treatment where I'm going. He said to make sure that I go in there in depo mindset, not to trick, but really to make sure that the question I'm asking is actually getting answered. Too bad I'm not in trial mode, then it would be easy - OBJECTION NONRESPONSIVE! Oh, sorry, doctor, that just slipped out. Let me rephrase my question. *smirk*

    Gotta get dressed, get some work done, then get over to the hospital.

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  • Frill
    Frill Member Posts: 311
    edited November 2015

    On Tues I had an MRI biopsy. Who hasn't had like 5 billion biopsies? Maybe I've had more than most people. A lot of times I get a gasp when people look at my pics because of the number of clips I have. Anyway, this one woke me up in the middle of the night hurting so bad. No worries, I was having an ultrasound biopsy the next day! I managed to make it in to the front desk and was shuttled back to a room with icepacks, then taken back for the biopsy. The kind, older German radiologist came in and threw a fit when he saw me. I said to please at least take a look since I was there and I could suck it up. He was showing his gaggle of nurses - this is the area of concern. And this is what they want me to look at BAH! This is nothing!!!! (Secretly thinking, YES! please be right!).

    He called my team's doctors over for a meeting to find out why they'd scheduled two types of biopsies back to back like that. The PA had to meet with me immediately about why I was in so much pain and get me pain meds.

    I didn't want to get Lucy Lawless in trouble. I had no clue who the dr was that ordered the MRI biopsy. And the dr who actually did the biopsy was a freaking rock star! I imagine that they were going in the same area twice in less than a month and well, my body just said, no ^%^&&* way. But wow, Dr. German Radiologist was amazingly kind. He said that we had enough time to see the results of the MRI biopsies before surgery to do ultrasound biologies if necessary. The best part was, "There will be no butchering today."

    He gets extra cookies on cookie delivery day.

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  • marijen
    marijen Member Posts: 3,731
    edited August 2016

    Frill, I sense your life is full of drama. So when is your surgery? Did you get a date yet?

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  • Frill
    Frill Member Posts: 311
    edited November 2015

    I just got the DX - the satellite areas are cancerous, so MX is the only option. Good thing I'd decided that's what I wanted to do for cosmetic reasons.

    Even though I'd pretty much decided, now it's all real and whoa, it feels like I'm hit with a ton of bricks all over again. Plus, I'm worried about cosmetic looks afterwards. Really worried. I don't know if I have to have radiation or not. I basically just want this done and over with as fast as possible.

    Ugh. Ugh. Ugh.

    Marjen Surgery is Nov 19. For some reason I thought I had a week longer with the preciouses. All of us did - well, they were thinking about surgery. I was thinking about the precious. Lol.

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