NOLA in September?
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Just two weeks ago,my gyn said no more tests for me, so he clearly would not order them for me... but perhaps you are right that my BS (a woman) would... I have no issues going back to her when I am all done and asking for follow up... It all would certainly make me feel better.... or maybe I can convince my MO to order it... although he scoffed at the idea when I last mentioned it... but he has this bad attitude about my going to NOLA for surgery and has a tone I don't always care for... I dod think he is very good at what he does, but would prefer a more accepting approach toward the decision I made for MY body.
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There is always some breast tissue left after mastectomy - they can't get it all but our risk for bc should be reduced below the general population. I originally had a unilateral DIEP 4 years ago after a bc diagnosis and I continuted to have yearly mammograms and MRIs on both sides. I am not sure what will happen after this GAP but I think the radiologist I go to routinely does mammograms on autologous reconstructions so I think that will continue. Not sure about MRI's - I will need to ask. I was told I need to go to a very skilled radiologist who specialized in breast and does nothing else. The many surgical clips in the reconstruction and small pieces of fat necrosis can easily confuse a radiologist who is not an expert in this. I spent sometime researching this and I was told the radiologist was the most important factor - much more important than if the MRI machine was 2 Telsa or 3 Telsa. I won't let just a random radiologist working at a facility read my mammograms or MRI's. I requist one specific radiologist who I was told is the best in the area.
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My BS has a favorite radiologist and has a list of approved radiologists and won't let any others treat her patients... so maybe i should contact my BS when I am all healed... or should I go back to the radiation oncologist who recommended it?
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bdavis - I am not sure of the answer to this question but I was told to go with a radiologist who is dedicated to looking at breasts (no chest x-rays or other non breast studies). My breast surgeon is the one who recommends screening for me and ultimately recommended the radiologist I choose to go with but I also talked to a number of other docs at major teaching hospitals to try to figure this out.
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I want the HOW TO book on all this crap... it is one decision after another, one question after another... and we, the patients, end up fighting for what we feel in our hearts is the best for us, and hope and hope we have dotted all our "I"s and crossed all our "T"s.
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gold standard = cutting edge = wild wild west. I'm happy to be a pioneer, considering the alternative.
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YES.
All the past we leave behind;
We debouch upon a newer, mightier world, varied world,
Fresh and strong the world we seize, world of labor and the march, Pioneers! O pioneers!We detachments steady throwing,
Down the edges, through the passes, up the mountains steep,
Conquering, holding, daring, venturing, as we go, the unknown ways, Pioneers! O pioneers!0 -
Last Nov 9 I had my mammogram and ultrasound, and I pointed out a lump to the technician... and so the journey began... being told my lump was very suspicious and needed further testing. So hard to believe the path my life has taken this past year... And I am planning on giving cancer ONLY one year of my life... Once I get past stage II next Monday, it is onward and upward... That's the plan and I'm sticking to it!! I was diagnosed Nov 12, 2010 and Nov 14, 2011, I am getting perfected in NOLA!
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Yay Betsy!! Sounds good:)
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How are you Jerusha?? Healing well?
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Are we still supposed to do MRI's after a masectomy and reconstruction? I didn't do any MRI's after my masectomy four years ago. I only have yearly mammograms on the non-cancer side. Anyone had trouble with a mammogram and mastoplexy? I'm hoping it doesn't change but my boob feels harder where he cut.
Djfrro- did you just complete stage 1 or 2 because the list of surgeries says stage 2 but it seems like stage 1. If it's stage 1, I can understand how you feel. After I woke up from surgery i thought, what am I doing. Why did I do this elective surgery? I would like to encourage you not to look back and know that you did the right thing. Things will get better. I'm still trying to be patient recovering from stage 1 post op 7.5 weeks now. I am not perfect and I have areas that I would like to change but continue to hope and pray that things will work out. On the bright side, I have a foob and I can wear a bra and I look forward to buying tops again. You are not alone, each week will get better. Lots of HUGS to you.
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I'm going to post quickly and without having read the last few pages so I can go to bed while my husband is still awake. Just want folks to know that, while I often rise to the occasion while in NOLA, I crash after I get home. So I have the post NOLA/surgery blues/fatigue/depression/malaise I've come to expect but never get used to. I think there's something in the air in New Orleans that raises me up while I'm there. It's part of the magic of the place. I guess I don't notice being tired as much and I eat well and there's so much to feel happy about and such great people. Then I get home, and after a day or two I feel like crap. Wish I understood the physiology of it all. Hope it doesn't last too long this time. Drain output is low but continues to be deep red, so I guess I'll keep it for a while, as well as the dom, neither of which I mind as much as the down.
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In regard to breast tissue found in the axilla....During embryogenesis ( fetal development) there is tissue that develops along what is called the milk line that runs from the axilla down to the inguinal region. During normal development of the fetus, most of this goes away -- except for the tissue in the pectoral region that gives rise to breast tissue. It is uncommon for there to be persistence of the other tissue, but if there is, it is most commonly in the axillary region. 2-6% of the population has this. It is called ectopic or accessory axillary breast tissue. So when found on MRI, this is probably not tissue "left behind" from mastectomy. It is more like an island of breast tissue , not attached to the breast. (If it is found on MRI prior to MX, I do not know the protocol for dealing with it...I would think it would be removed as it is actual breast tissue and subject to all of the same issues as the tissue in the breast.)
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Thank you Besa, Betsy, Paula, Keri and everyone. All of you have pinpointed some big issues for me, and I appreciate your tips. Keri you have made me realize I move from panic to sadness, and this is ok, and normal to feel. Some days I am still so shocked to find myself in this situation, shocked at how we have to digest all this info, and then decide, over and over, what to do. Honestly the only good thing about bc is that I have found all of you! Thank you!
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Hi Melissa! Jerusha's post seems really helpful in explaining what may have happened with you. Keep us posted on what you hear from the center.
This whole question of remaining breast tissue and should we have any follow up is really concerning to me. I had my mastectomy locally and initally had an implant reconstruction. When I went for an initial consult with Dr D he seemed very surprised by the size of my breasts with the implants I had in. They were smallish (I think 350s something) and I had a D cup at at least. (It's really hard to tell with implants because the shape is weird). Anyway, he said that they seemed to leave behind a substantial layer of fat when they did the mastectomy. I have always wondered what that means in terms of any breast tissue being left behind.
A few months ago I noticed some weird feeling tissue in one of my breast-very near where the cancer was. It doesn't feel like a classic breast lump more like a thickening (hard to explain). I saw the oncologist and he pretty much blew me off. First he said that must be a channel where they did the biopsy! (What a stupid thing to say! That tissue is long gone. can't stand this oncologist but that's another story.) He doesn't recommend any follow up imaging after mastectomy.
I go back and forth between deciding to just not worry about this whole thing, or thinking I should try to figure out if I SHOULD have imaging done since I did have a good bit of fat left behind. And I am BRCA pos so if there is any breast tissue left in there it seems like I would have a higher risk of developing another primary cancer.
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Betsy wow! That is a lot in one year. Your optimism and motivation is inspiring!
Victoria, the center did call in a last minute Valium prescription the night before. We had to run to a pharmacy and wait in line so maybe get one called in before hand to have ready, just in case? Especially if you are feeling it so strongly already. I know others have had ambien called in when sleep the week before is proving difficult.
My brest doc did say she wanted to see me six months post-op. Not sure if anything else is required, like MRIs but I certainly am wondering now.0 -
Surfagrl- with mastoplexy or reduction you can still have breast MRI and mammogram. Since I had so many issues with my previous unilateral DIEP, my first plastic surgeon did a mastoplexy on my contralateral side, then decided it was too big and then did a reduction :-( but imaging can be done with both of them.
bdavis- As for a " how to" book to deal with all of this -- I read a book called the "The Empowered Patient: How to get the right diagnosis, buy the cheapest drugs, and get the best medical care every time" by Elizabeth Cohn. It is not about breast cancer or mastectomy but is a general how to deal with serious medical issues book. In my case it really helped me become assertive, encouraged hard core research, and advocate for myself. I was being a "good girl". Reading this book helped me do what needed to be done - research, collect all my medical records, advocate hard for myself, find a good fit with a knowedgeable doctor (and walk away from the docs who I feel are not helping me), etc.
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Ladies, I was traveling yesterday. Back today!
Victoria, I should add you to the listing above, at the top of this page, and you will see who else will be there when you will. Take a look up there, and give me your info. I need your surgery date, who your doc will be, and what you're having done, or whatever you want me to put. I think trepication leading up to surgery is totally normal. I remember waiting for stage 2 and feeling like I should get up and run away!!
Amy, if it is causing you any "wonder", I would insist on a scan. Neither my ocn nor the local breast surgeon who I saw before I ended up at NOLA suggest any scanning after bilateral mx. My Rads ONC suggested a breast MRI about ~2 years out, and I was happy to get a report that showed nothing nothing nothing.
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Hi Amy! Sat with your folks at Rebecca's show the other day - sweet people! Missed you!
The post-mastectomy f/u appears to be quite confusing. Look at all the different opinions we've received from our local docs, just from the thread here over the last couple of days. Wowzers! So difficult to know what to do. I met with 2 oncologists after I got home from NOLA: one had never seen a flap surgery, so didn't know what to tell me to do (and she's a very well respected oncologist in the area) and the other one (older and a bit more experienced) said there's no need for mammo's (they'd be looking at my butt tissue!) but MRI's would be good (to look at the walls, both anterior and posterior). I have good radiologists - experienced in looking at flaps, etc. The leftover breast tissue is a big area (3.5x1.5 inches), not microscopic by any means, an "island" or "ectopic" breast tissue, as Jerusha described above. And, yes, if left there, has the potential to harbor those creepy little cells, which can wreak havoc. The "enhancement" means it "lit up" - ie, has a good blood flow to it. It could be because the cells are bad, or the enhancement could be due to hormonal influences, or other benign conditions. They just don't know. I can't shove my armpit into a mammogram machine, so they can't see the individual cells. They can only see if there are masses (which there aren't, at this point), and wait and watch to see if there's any change in 6 mos.
Betsy: I also agree that having to be our own "doctor" has been really difficult. I asked my Primary Care Doc if she'd "quarterback" this for me when I was originally dx'd (DCIS, March, 2010), to help me think of the questions to ask. She basically said "no". She didn't exactly say that out loud, but she proceeded to do absolutely nothing to help me out. Being an 'empowered patient', advocating for yourself, is the only way to go. Good suggestion from Besa, above, re: the book.
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Mchas, can you have this "island" removed? I totally would be watching it like a hawk. Are you doing another MRI in 6 months?
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Spring: Good question and "I don't know", is the answer. My first inclination, when my oncologist called me back last Tuesday morning, to tell me it was there and it was "enhanced" was to rush in and have them take it out! I have gone down this long road of BMX and reconstruction, with amazing results due to the wonderful hands of the BS and PS's in NOLA, to never, ever have to 'monitor' anything ever again, right? Like the rest of you all! BUT.... this 'island' of leftover breast tissue is pretty far up in my armpit, so there is some risk of removing it: arm pain, arm swelling, etc. So, it's not an easy decision. My radiologist here said the best course of action is to have the NOLA docs look at everything and help me decide what to do. So, that's what I'm waiting on now. If they don't recommend removing it, I will have to indeed, watch it like a hawk. I HATE MRI's, though - I get nauseated, and get a bit anxious in that loud, clanky tube, so I really, really, really don't want to continue with them.
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I had stage two done, but I was sick leading up to it and I think that is causing a lot of my problems. The Dr's don't really know what is wrong with me, they are calling in serum sickness but I need to see several specialists and they can't get me in for weeks, mean while, I can't breath, my joints hurt, and I just generally feel like crap, that is on top of just having surgery.
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djfrro - I'm sure that the docs are treating you but here are some questions. Have they changed your antibiotic? Serum sickness can occur secondary to infection or allergic reaction to a medication. What are they recommending that you take while you wait to see the specialist? Anti-inflammatories like Ibuprofen or Naproxen may help the joint pain. What about Benadryl? Just some thoughts. Hopefully, you'll be symptom free before the few weeks it will take to see a specialist!
Jerusha - fascinating about the fetal development of breast tissue!
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Djfrro: did they check for C -Diff ? That has similar symptoms due to antibiotics. Am so sorry and am praying for a speedy recovery! I just don't know how much stress we can take mentally and physically! Hope you feel better soon.0 -
bddaze - I agree 100%. The missing link is the emotional component. I would love to see them add a psychologist to their services.
Celtic - sorry to hear about the seroma. I have had them but they were never too bad (never bulging too much or pulling on my incision). Just wondering why you can't take anesthesia to aspirate? I actually found I didn't even need numbing to do mine since the area had no feeling at that time. I hope you feel better soon. I know I can only deal with just so many cranky, down days before I have to try a bunch of things to pull me out of it. This group, along with friends really helped. These last few days I am already feeling soooo much better. Calling friends and venting really does help. As far as how long until we snap out of the big C stuper - not sure - but I plan to work on it as hard as I can...but I think being done with surgeries is a prerequisite. So don't be too hard on yourself
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Am having BMX with hip flap on Nov 9 with Drs. D and S. Wish me luck!
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Kathryn -- I have a phobic needle disorder with attendant panic attacks which is why I would need anesthesia for aspiration. So far, it hasn't gotten too big -- way smaller than a tennis ball. I only noticed because I didn't feel the indentation in my donor cheek any more! Am a bit more worried that the lower end of the scar is red and hot. Gobbling antibiotics, but if not feeling better tomorrow, it will be sending on those lovely pics and asking for Center advice.
I think you are right that we can't really start to "put it behnd us" as long as there are surgeries in the future. Yes, there will be monitoring, but we were doing that anyway -- that's how we found mine. I don't now -- perhaps it is the gloomy northeast weather. November is known as being damp and dark until the snow starts to fly!
I guess I resent (and some days more than others) the kind of things that others on the board have posted about -- the interruption of family and friends and life and love. That one has to pay attention to DOMs and medical protocols and other strange things you have never done before and hopefully never will again! And the fighting ... doctors whose egos can't handle that perhaps there is someone who can do something they can't and BETTER!!; getting answers; insurance. Just makes me want to curl up in bed and pull the covers up. And I am willing to bet that most of this is a result of having an infection in that scar. Sigh ...
I have had it easier than most ... I really should not complain. So, I won't.
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they really have not checked for anything, and are not giving me antibiotics, it will probly all go away before they decide to figure out what is going on. The only thing he did (my family dr.) is put me on a course of prednisone when the pain got to be to much, it helped, but my back and ribs still hurt a lot and it is not due to the surgery, they did a chest x ray and it was normal. The best day was right after my surgery and I had my pain pump, it was the first time in weeks that I had been pain free.
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So I will be five weeks post op tomorrow. Is it normal to still have bruising? My breasts are brownish bruised in some spots, the spots that are still hard and hurt more. Either they a bruises or the hard areas are brown and I don't know what that might mean.
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Jerusha... you amaze me with your knowledge... you all are so well informed and bright... Its a pleasure to read.
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