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Jenny in Florida

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Jenny in Florida last won the day on August 29 2018

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About Jenny in Florida

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  1. My nurse navigator tells me that insurance plans are required by law to cover reconstruction.
  2. I tried. I really did. But the worse-than-expected results from my second biopsy pushed me over the edge, and I made the decision this week to go ahead and drop the second class, the one I was taking to try and get a jump on the master's degree. I'm staying in the other class, the one I need to complete the graduate certificate. I'm sad, but also kind of relieved. I just don't see how I can juggle the full-time job and two classes plus deal with the breast cancer treatment, surgery and recovery. Something had to give, and the optional class seemed like the best thing to cut.
  3. Hugs in your direction, too. I was telling my husband that I find myself being much more angry about needing to make this decision than I am about having cancer in the first place. I think I feel like cancer is just a quirk. Twelve out of every 100 or so women are going to get it, so I happen to be one of those 12. This needing to choose which parts of my body to have hacked off, though? That's something being imposed on me by people. What I want is for some competent authority to provide me with relevant and meaningful information that makes the "right" decision clear to me. Instead, I get all of these professionals telling me it's up to me. And I know why that is. I know it's because there are far too many variables and that there is no one "right" decision. And, ultimately, I'm the one who has to live with my choice. And if anyone actually swayed my decision and I ended up unhappy, it would then be that person's "fault." So, yeah, I get it. But it still feels ridiculous and unfair that I have to make these choices.
  4. When I spoke to the surgeon's PA about the test results and the change from lumpectomy to mastectomy, she said right up front that there is no medical reason to remove the second breast. The cancer I have is not especially aggressive; the surgeon suspects that what is there has likely been brewing for some time. The tumors are estrogen and progesterone receptive. HER-2 negative. Both breasts have been scanned with by mammogram, ultrasound and MRI, and there is no indication of any issue in the second breast . Implants are an absolute non-starter for me. I would feel much more "weird," for lack of a more precise term, about having a foreign object in my body than I would wearing a prosthetic or just "going flat." At this point, I think the default position is to do the unilateral, no reconstruction. If I try to look at myself from the outside, in the context of other decisions i have made about my life and body, that feels like the one that is most consistent with my personality. It's the least invasive, most conservative option that will address the medical need and get me back on my feet and into my life with the least possible amount of trauma and fuss. Plus, I am weirdly attracted to the DIY aspect of being able to knit or crochet prosthetics ( https://www.knittedknockers.org/ ) to match the season and/or my mood. However, I have asked for an appointment with the surgeons who do the DIEP flap just to be sure I have done my due diligence. Keep the votes and replies coming, please. I'm finding the discussion extremely helpful!
  5. Oops, you are correct. Thanks for pointing that out. That's what happens when you are trying to talk and type at the same time. The fourth option was supposed to be bilateral with no reconstruction. I fixed it.
  6. As I've shared elsewhere, I was diagnosed with breast cancer a couple of months ago but had been operating under the assumption that I would be doing lumpectomy + radiation. This week, I learned that the additional mass I had biopsied last week is also cancerous, and I am now looking at mastectomy. Although there is no medical reason to do so, my surgeon has offered me the option to remove the other, healthy breast at the same time. I also need to decide whether I want to have reconstructive surgery, whether that winds up being for one breast or both. My initial reaction when the PA asked me during the phone call when we discussed the biopsy results was to say no to removing the second breast, because it goes against my nature to do anything more invasive or complicated than is actually, medically required. I also had a knee-jerk reaction against doing reconstructive surgery, because I don't like the idea of implants. And I feel even more strongly about that after chatting with my nurse coordinator about the process and the fact that implants need to be replaced every decade or so. I was briefly attracted to the idea of the DIEP flap reconstruction, but the more I read the less appealing I find what sounds like a pretty extensive process. All of which seems to bring me back around to unilateral mastectomy without reconstruction . . . except that, when I actually picture that, I am not sure how I'll feel about it. So, what would you do, if it were you? Or, if you have faced a similar situation, what did you choose? And are you content with your decision?
  7. I feel pretty clear about the situation. I don't like it, but I understand. The person who gave me the news is my surgeon's PA, who works with him very closely. The surgeon also explained that this was a possibility a couple of weeks ago when we discussed that he was ordering the second biopsy. There are a few things going on: There are three lumps -- the largest one that I initially felt, a medium-sized one that the report refers to as a "satellite" that is close to the big one and this smaller one that is farther away. The three lumps combined "add up" to more than 6cm. The third lump is technically just barely in the same quadrant of the breast, but far enough away that taking it and the other two lumps and enough margin of tissue around all of them means the surgeon thinks it would not be possible to leave enough breast to make it worth attempting the lumpectomy. In addition to the three identifiable masses, the most recent scans of the area "just don't look good," implying that there may be more things going on than we have yet identified. Obviously, I will ask lots of detailed questions when we meet the surgeon in person in a couple of weeks. However, everything that has been explained to me makes sense and is consistent with what the team has been discussing with me since that third mass was identified. So, while I was hoping for a different outcome, this one is not a surprise.
  8. The surgeon's PA called this afternoon with the results of the second biopsy. The small third lump is also malignant. Apparently, it is far enough away and results in enough material that lumpectomy is no longer an option. We are now looking at mastectomy with sentinel node biopsy. The surgeon has also decided that, because of the heart/lung stuff on the recent CT scan, I will need to be cleared by a cardiologist before we can proceed with surgery. His scheduler gave me a short list of recommended cardiologists. So, next up on my to-do list is making the "first available" appointment with one of them. They moved my follow-up/consult to a week from Monday, because my surgeon is on his way to help out in the Bahamas. (Funny story: I was driving home thinking about all of this stuff, when I heard my surgeon being interviewed on the local NPR affiliate, talking about the Bahamas trip.) Once I have a date for the cardiology work-up, the scheduler can book an OR. And that's all I know for now.
  9. I took a study break yesterday and made a little octopus. We didn't meet last week, because the library was closed due to storm concerns, but I will be going in this week with the little guy below, a second seahorse and a couple more starfish to contribute. I started a fish tonight, but since it's back to work tomorrow I'm not sure I'll have time to finish it before Wednesday.
  10. Well, I reached a kind of breakdown point earlier this week. There was major prep for Dorian, the hurricane that didn't hit us but kept us in suspense, and my son's car died -- for real this time -- meaning I ended up driving him around town and listening to him talk endlessly about how he might be able to afford to replace the car and what cars he was considering. I kept seeing days slip by on the calendar and comparing the current date to the deadlines for assorted assignments, until I pretty much lost it on Thursday. I'm already past the official drop date, but I was strongly considering withdrawing from the second class, getting whatever refund I could and retiring to lick my wounds until next semester. When it became clear exactly how under water and upset I was, my husband and son (who normally cannot be in the same room for more than 5 minutes without tension and drama) somehow rallied and managed to work together to make it possible for me to devote a significant chunk of hours to studying. Then, once the university officially reopened on Friday, the professor for the second course, the one with the much more significant workload and that I don't "need" to finish the certificate, announced he had pushed back due dates on a couple of assignments and made another one optional. So, I spent pretty much all day yesterday in front of my computer reading journal articles and writing assignments and taking quizzes until I felt like I could breathe again. At this point, since I am past the drop deadline and would be looking at a W on my transcript no matter what, the only value to dropping a class now rather than in November is how partial a refund I would get. And, while money is nice, I'm willing to take the risk and hope I will be able to keep up. With any luck, the car I am taking my son to look at today will be good and we won't have another major weather-related disruption and my medical issues will not get in the way more than necessary and I will have enough time and energy to manage the rest of the semester.
  11. I did look at Orlando Health, and our insurance does cover them. However, unless something goes seriously off the rails, I don't want to start over. Yeah, my husband would really like me to contact my GP now, instead of waiting. I can send a message through the portal.
  12. Okay, I went back and looked at the assorted reports posted on my patient portal. There are a few CT and x-ray reports going back to 2012, all of which specify that my heart is "of normal size" or that there is "no cardiomegaly." Some of the reports also specify that my lungs are clear. The most recent was after my thyroidectomy in late 2016. So, it does look like these issues may be new (or at least new-ish). I don't actually have a cardiologist, since, as far as I knew, the heart issues disappeared with the thyroid problems. My current plan is to take my notes about the previous CTs and X-rays with me when I meet with the surgeon's PA for the biopsy follow-up next week and raise these questions with her. If that goes nowhere, then I will reach out to my GP and draw his attention to the most recent CT scan report.
  13. Ooops, sorry. I'm popping in here to read and respond in between studying. Yes, I've had echocardiograms, too. Over the years, I've been told I have a heart murmur, then that I didn't, that I have mitral valve prolapse, then that I didn't, and then had a few episodes of atrial fibrillation that landed me in the hospital. I think the most recent echocardiogram was probably around the time of my last AF hospitalization, which would be about three or four years ago.
  14. I've had several EKGs over the years while dealing with the AF episodes. I'm assuming there will be more during surgery prep. Yes, when they did the thyroid surgery, I ended up having to stay an extra night in the hospital because I didn't wake up as quickly as the surgeon would have liked. It doesn't surprise me, because I'm one of those people who can't so much as look at even over-the-counter medications stronger than Tylenol without getting drowsy. When I took the "mild" sedative before the last round of scans, I was basically asleep for the rest of the day. Of course, the stuff that I take for the neuropathy that is supposed to help me sleep? That's not doing its job. I'm still clocking an average of about 5 hours per night these days.
  15. No, my insurance firmly denied the PET scan, so I had CT scans of my chest and abdomen/pelvis and a brain MRI as an alternative. I just went and reviewed the CT reports to see whether anything about the spinal cord was mentioned. The chest report did mention the three fractured ribs, but the surgeon's PA seemed to think the recent fall accounted for that and no additional investigation was necessary. The chest CT report also mentions some mild pulmonary edema, that my heart is slightly enlarged and some kind of issue with my esophagus. Again, the PA said she had consulted with the surgeon and that none of these issues seemed to be related to the breast cancer or needed investigation in connection with that. Neither of the CT scans mentions my spinal cord at all. The pulmonary edema, if I'm reading the info on the Mayo site correctly, could be accounted for by the recent fall (which is also what we're attributing the fractured ribs to), although I've not been a great breather for a long time and have had trouble breathing while lying flat for some time. We're attributing the enlarged heart to my history of atrial fibrillation associated with the (now resolved) thyroid problems. And the esophagus? Who knows? The PA did speculate that I might need an endoscopy at some point, but I don't know whether that is something we'll need to address before the breast cancer surgery or just something I should do "eventually." On the one hand, I'm so ready to be done with testing and get on with surgery and treatment. On the other, I'm starting to get nervous about all of the "little" stuff piling up.
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