Any Michigan Ladies?
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BlueHeron---maybe I didnt ask enough questions, but I have DCIS grade 3 with a small microinvasion that disappeared on deep sectioning. Margins were good. The SNB was negative so the RO said I would need 4 weeks of radiation. It's all so overwhelming.
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Annie, I'm at McLaren in Lansing, formerly Ingham Regional. I'm lucky: my MO is MSU, and my RO is UofM. I'm very happy with my medical team.
Re rads: I was in a gray area, and after much hemming and hawing, decided to go for it. After a BMX and five months of hard chemo, I figure I'm all in.
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Just saw this thread about Michigan ladies. It seems most are around Ann Arbor area but I am just outside Grand Rapids and being treated at Lemmon Holton Pavilion. KateB79 my daughter is moving to the Lansing area and we are looking at houses in Portland or Grand Ledge area for her this weekend.
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bella_16, that makes sense for you cuz you had Lx. The reason it's not clear for me is cuz I had Mx with close margin.
KateB79, did you have rads on a flat Mx chest? I'm not doing recon. If so, how soon post op did you start? I'm three weeks post and still uncomfortable, and incision feels tight, and lots of pulling and pain where the drain was. I'm hoping all that would be way better before I start radiating it!
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The camp thru U of M starts on a Monday and goes thru Saturday. They asked when I filled out the form if we were willing to carpool with another family in the area. Luckily for us it is only about 40 mins away! Mine are so excited to go and spend the night. They have both gone on school field trips overnight for 2-3 days when we lived in Germany.
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BlueHeron, are you doing any PT exercises?
I am, indeed, doing rads on a fully-flat MX chest. One-sided rads only, but that seems like enough--ha ha. I had my scar revision and prophylactic MX on 12/30 (originally, I thought I would do recon, but then I learned more about everything involved and decided just to go flat), and started rads yesterday.
Do those exercises!
Duzy, Grand Ledge is a nice area.
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KateB79, I've been doing the range of motion exercises since day one, but I feel "stuck". Not in my shoulder, but in my rib cage where the drain was, and along my side. The pain and pulling there hasn't resolved and limits my mobility. Still have some swelling at front of the armpit / pectoralis region too. I really don't know what "normal" is for 3 weeks out, but I got a referral to see an OT who specializes in post-mastectomy, scar work, lymphedema, etc, and I have my first visit with her in a week.
Were you still having issues three weeks out? Am I just impatient? I feel like if I push the stretches too much, swelling and pain increase and it doesn't help.
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BlueHeron, I know exactly what that feeling is!
In fact, I had my surgeon take a look at me almost exactly three weeks post-op. He suggested ibuprofen (I still had the big ones leftover from surgery), and hot compresses. I used the heating pad only on the drain area and around my ribs, and did a stretch where I put the arm on the stiff side--for me, it was mostly on the left--above my head, holding a door jamb. Then I would take my other hand and massage the stiff, sore area in a circular motion. Once or twice, stuff actually felt like it was snapping in there. . . and my surgeon said that's what we want. When things are healing, they contract, and if we can keep the tissue soft and elastic, that's for the best.
The OT will help, I'm sure. In the meantime, maybe try the ibuprofen/heat combo? If you're unsure, definitely call the surgeon to ask, but it worked well for me.
Sending hugs!
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KateB79, thank you!!!! I'm so glad I'm not crazy!!! I will try that, starting right now. Really, thanks.
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hi
Has anyone seem a Medoc named Amy Weise? She was mine up north and When I Google search her I cannot tell if she has moved to Flint or Detroit.
Appreciate help in locating her. Thx
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She's at Karmanos
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Good morning ladies (waving *hello* to my friend Denise) :-) I've been reading back through the pages of this thread in an effort to kind of determine how to move forward. I was just dx with a new primary four years out from my first dx - different cancer, same breast, same area. First time around I completed my surgery, chemo and rads in Jackson, and was very, very pleased with my experience. This time, however, things aren't starting off quite as well (for example I learned a week after biopsy that there isn't enough tissue to test for Her2 so I now need to wait another 10 days for an excisional biopsy). I feel a little stalled. Anyway, I went online to research UM for PS and reconstuction, completed a form for a second opinion, and now wonder if perhaps I just shot myself in the foot with my current MO by self-requesting a second opinion? I think I let my frustration get the better of me, but I need answers and I'm just not getting them.
I love being able to have treatment (and follow-up visits) in my own backyard, but since this is my second go-around I feel the need to be a little more aggressive than perhaps I was the first time. For those of you that spent the day at UM being assessed, what are your thoughts? What kind of tests/scans did they do? Did you feel you were getting the answers you needed?
I appreciate anything you're able to share. Thanks!0 -
Nancy, I haven't been to the U yet, but I did make an appointment with their plastic surgery department. I'm seeing Dr. Wilkins on the 29 of this month.
I had met with a MO at St.Joe's and felt very uncomfortable with his follow up. He basically went over my Oncotype score, prescribed Arimidex and said see ya in six months. Needless to say I felt abandoned. I found a wonderful MO closer to home and I'm very happy. My point being, don't feel bad about seeking a second opinion. We only get one shot at getting it right. A second opinion always made me feel more confidant with what was being prescribed. U of M has a really good reputation. Good luck!
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Any doctor worth his or her salt will embrace the idea of you getting a second opinion. Don't feel bad--I second what Suz-Q says: we only get one shot to get it right.
Especially because you're talking about PS/recon, be confident in this. A good PS/recon surgeon is hard to find, and UM has the best reputation in the state.
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NancyHB, I find most docs welcome second opinions. In fact my RO encouraged me to get one to help with decision making.
I'm very happy with my providersat UM, though I do find that I need to stay on top of everything and make sure nuances are being addressed, etc. That said, I'd likely feel I had to do that anywhere.
My BS is Sabel, RO is Pierce, and MO (I will meet her in a few weeks) is Schott. I met with PS Brown and also spoke with Wilkins, and I found both to be comforting but realistic, patient, thorough, and kind. After learning all that is involved with recon, I decided not to go that route. But the PSs at UM are very good.
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Hi Nancy, I agree with others. Most doctors welcome a second opinion. I told my BS at St. Joe's that I was getting a 2nd opinion at UM and she was pleased to hear it. She just asked that if I chose to switch I let her know. I ended up staying at St. Joe's because I do love my BS very much (Dr. Kulick). But I understand feeling weird about it. I did too. But this is your life and you need to cover all the bases!
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Hi, I am from Dearborn and am 57 years old, with two adult children both serving in the US Army. I was dx at the end of September at Henry Ford from a biopsy. I am HER2-Positive er/pr negative. I went to the Mayo Clinic in Rochester, MN to complete/affirm my dx. They ran all my tests and performed my lumpectomy on my left breast as well as the removal of a large benign tumor behind my nipple. Henry Ford wanted to remove the nipple and breast and from everything I read, and from just recovering from an hysterectomy I didn't want another large surgery. My Mayo surgeon saved my nipple and was able to remove my tumor and nodes from the same cut. The Mayo oncologist recommended AC/TH/P. When I returned from Mayo I went to three other oncologists looking for opinions on the poisons I should take, Beaumont (TCH/P), St. Johns (TCH) and U of M (Taxol/H or a trial called ATTEMPT with an arm of the trail using TDM-1). I opted for the trial but have not been accepted as of yet. I am hoping to hear in the next day or so. I think Dr. Henry at U of M is outstanding as well as Dr. Duhl at St. Johns. If I'm not selected for the trail/TDM1, I will choose the Taxol/Herceptain. The TDMI does not cause hair loss. If I get the Taxol, I will be using the cold caps. I'm happy to meet all you Michigan sisters.
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Welcome (((Tuboss))) so sorry you have to join us...sounds like you have a great medical team, hope you get accepted into the trial. Let us know how you're doing! You will find lots of support from the wise women on these boards and tips to get thru chemo:) Take care, (((Hugs))) Maureen
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Well I didn't get into the trial due the fact that the additional test Dana-Farber group completed, they determined I am ALSO Her2 Triple Negative. So my entire world was turned upside down and a totally different regimen had to be considered. So, I am starting my first treatment of CMF 8x and Herceptin 17X, both every three weeks, this Friday at U of M Ann Arbor.
I'm feeling anxious and a little overwhelmed to say the least. Is there any members in this group that have completed their treatments there or have been on CMF?
Trisha
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Trisha: I hope you're getting enough rest from the treatment. Just want to say that I think the triple negative group here has a lot of information about this diagnosis.
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We had our second-opinion appointment at UofM yesterday, and I'm forever grateful we did. Suz-Q, we met with Dr. Wilkins who is amazing!! We had the most wonderful conversation and he explained all my options, talked about outcomes and research, and helped me decide which kind of surgery and recon to pursue. We'll be meeting with some of his colleagues because he specializes in pedicule TRAM and I want to pursue DIEP or free TRAM.
Their pathologist re-read my slides and found a couple things not on my original path report, including a "dirty" margin and high-grade DCIS with comedonecrosis. The tumor board met and all agree that what I have is not a new primary but rather a local recurrence. They support this with my first path report (ER+ 50% and PR+ 10%) and Oncotype results (PR- and ER on borderline for negative). They explained there were enough TN cells in my previous cancer that a few survived chemo, rads and targeted boosts to start growing again. And sure enough there is plenty of literature about changing hormone receptors in local recurrence. It doesn't happen often, but it did for me. They said they would only consider it a new primary of it appeared in the opposite breast or a completely different area than before. This is directly next to my previous tumor bed so it's a recurrence.
They're sending a note over to my MO, whom I see tomorrow. I'll be curious to hear his reaction.0 -
NancyHB, I'm so glad you got some things cleared up. I agree, dr Wilkins is fabulous (though I decided not to do recon). I just got back from my first MO appointment, my last ologist!
I'm so, so sorry you have to go through all this again.
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Nancy HB sounds like you had good experience and are happy with the choice to pursue 2nd op. That "little voice" is never wrong.
I had My delayed bilateral DIEP with Jeff Kozlow at UofM. In 2014 there were 2 surgeons there who did that. Kozlow was the guy in the office on the day I could get to Ann Arbor. I think they are probably all good. I am still thrilled with my experience! And outcome. He gave me a life back and I would do all of the same thing with Kozlow again. For me the thought and anticipation of the surgery and recovery were far worse than the real deal.
Just thought I would share my UofM experience since you are considering.
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Has anyone had Dr Marianne Melnik as their surgeon? I need to do a nipple sparing mastectomy. Does anyone know if - or any other surgeon- has experience in performing it?
I feel lost and confused.
Thank you very much.
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Has anyone had Dr Marianne Melnik as their surgeon? I need to do a nipple sparing mastectomy. Does anyone know if she - or any other surgeon- has experience in performing it?
I feel lost and confused.
Thank you very much.
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I did not have Dr Melnik but a friend of mine had a double mastectomy and I believe nipple sparing and she did a wonderful job. My surgeon was actually Jayne Paulson out on Cascade Rd.
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hi Michigan sisters...it's been a while since I posted. I'm so glad that this thread is alive and kicking!!! I noticed some newbies from Lansing, MI. That's my area. 😊 KateB79, i think I may have had the same medical team as you. I also went to McLaren for chemo and rads. These boards were a lifesaver when I was going through active treatment, helped me in so many ways. I still check back now and again...old habits die hard I guess. Love to you all ❤️
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Nancy, So glad things are moving forward for you! This must be a difficult time for you. It's bad enough to go through it once, but twice must be even harder! You mentioned "dirty margins". Does that mean they told you the margins were clear at first, but they really weren't? They Told me I had a close margin in one area, > 1 mm. I had radiation and the boost in hopes that all of the cancer cells were destroyed. Obviously, there are no guarantees! I will meet with Dr. Wilkins on Monday. Your meeting sounded so positive that I'm looking forward to it. I met with Dr. Melek Kayser in St. Claire Shores yesterday. I liked him quite well.
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Anna2012
Don't know where you are exactly, but I'm in Flint. I had Dr Lindsey Gold as my breast surgeon and she did a nipple sparring bmx on me December 18, 2015. She works mostly out of Beaumont Troy but is at Genesys in Grand Blanc 4 days a month. I followed her to Beaumont Troy even though Genesys is so much closer because I wanted her (she has a fantastic reputation) and I asked her for referral to a good plastic surgeon she is comfortable working with. Apparently she knew of none in my area so she recommended me to Dr Meininger who operates at Beaumont Troy and his office is in Birmingham. Both hospital and office locations are an hours drive for me but they were both worth it. My incision is in the inframammarary fold and when I'm done with reconstruction it will barely be visible. I'm healing well and have only two fills to go before exchange. Even my plastic surgeon commented on what a good job Dr Gold did, though he jokingly complained she used small incisions.....turns out besides mad skills having small female hands was a plus for me.
Hope that helps you.
Cyber hugs....
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Suzy-Q, the final pathology reported there is a margin of less than 0.5 mm, so my MO and surgeon consider it "dirty" and are quite insistent that I move directly to mx, then chemo, then recon later. I start chemo next Tuesday, and will do mx with immediate recon this summer (wanting to minimize the number of surgeries and time off of work as much as possible). Dr. Kozlow was the other doctor that Dr. Wilkins suggested for DIEP/free TRAM, as both he and Momoh had completed fellowships in these surgeries (I think that's what he said). I'm not concerned about the margin at this point since I'm doing chemo and surgery in a few months.
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