NOLA in September?
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Cider, Kaitsmom, DsynDawn, Tigsun, Jerusha - Congratulations to all of you. You're now on the other side of stage 1!
Oh Kaitsmom! You are an amazing woman who I sure would like to meet. After all you've gone thru and now having to drive home and being so uncomfortable today, and your still being so totally appreciative of your juggling boobs! Those jiggling boobs put everything else (like only a little old collapsed lung - OMG!) into perspective - LOL! Oh - "juggling"! Well I guess they were jiggling AND juggling. Juggling jugs!
(Jerusha - Oh how I hate it when I spend so much time writing a post and then it deletes! I've learned that if I'm going to write a lot, I first type it in Word and then copy and paste - when I think of it - which is not often enough...)
Heatherbless - I loved your poem to your sister.
Leslie - I'm so glad gals chimed in on all your questions. We're all taking our turns being fountains of info. Dragonfly - great summary! Leslie, I had two kids graduating when I was diagnosed - one from high school and one from college - I know what you mean about feeling like the walls are closing in. Please don't hesistate to come here for support. Such a great group of ladies! And I think your husband will be there for you, too, in spirit.
Bennetts - So I guess I will be the only one here to say I'm glad I got plication (Springtime - I thought you had decided it was a good thing, too?). I agree that it is a major additional procedure. Surgically, Dr. D said it wasn't a big deal - an extra half hour surgery time. But he did warn me about the pain I would have afterwards. Actually, I didn't notice any great pain, tho I did have the great "pain ball" to help. For me, the problem was that I was still in some discomfort from stage 1. Having the plication made stage 2 more difficult than it would have been without. It definitely added to recovery time and feeling decrepit. But once i recovered and the swelling from everything went down, it was one of those things where I said, "Boy, I'm glad I had that done." At the time, tho, it was tough. Just yesterday, tho, I was shopping with my husband, noticing all the other ladies around my age and even a lot younger. I said to him, "I'm so glad I have such a flat stomach!" It continues to amaze me. The DIEP does do a lot of it, but this added an extra slimness to it that I don't think would have been quite as much if I hadn't had the procedure. So , again, you have to weigh the pros and cons.
Cider - Like everyone else, I'm appalled by what you went thru at the airport, on top of everything else you've had to deal with. It must have felt like the last straw! Geez! After my second breast, stage 1, I was pulled aside, too. The woman was very kind and apologetic, tho. I offered to show her my letter, but she said it wouldn't matter anyway. So she looked at the drains and swabbed one of them. And then she said that her mother had one of these, too. So I think she thought it was some kind of crazy little colostomy bag or something! LOL! Anyway, I guess I was lucky to have someone who was very kind, gentle, and compassionate. My suggestion for ladies worried about this is to time your meds to be at full force just as you get to the airport. Then maybe you won't care what anyone does to you! LOL! Seriously, tho, I'm really sorry, Cider.
BDavis - I hope you didn't tell Dr. D specifically who asked you to give a shoe report. Actually, it was Springtime who started this whole shoe thing!
Good luck Rogam and Nowords, coming up this next week!
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Minn, I am hopeful that by the end of this year, I won't be feeling side effects of the plication. It didn't bother me for the first 3-4 months. I'm hopeful that this is just a stage in the healing process.
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Minn, I am with you on the plication. I love my new body. I had my plication in Dec. and now the past few weeks I really am seeing the difference. It is so nice to get dressed in the morning. My DH is just amazed at how my body looks now. Had to go shopping for new pants. YEAH!!!
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You ladies have me so curious to see what Dr S says next month when I go... IF I go
I am super excited though to go back! .0 -
I went the TSA 3 times and I never had a problem. Maybe it was my stance because I was a little crazy by the time I got to TSA. I put my drain pouch under a big shirt and just scooted thru trying to give my letter to anyone that would listen. No one ever touched me so I think it just depends on which TSA person that you get. I also walked thru so I am not sure it that made a difference.
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BDavis - I've found myself thinking alot about your conundrum. A number of us have had to make decisions that were very, very difficult. I so remember trying to weigh the options, trying to see into the future - trying to figure out how I would feel one way or the other - would I regret either choice? Would I be glad I made either choice? Anyway, it's very difficult to be in those shoes!
I just want to reassure you, tho, about Dr. Stolier - not that you need reassurance about him. He is not a doctor who will always be too conservative or always too free-wheeling. I had the opposite reaction from him that you did. That is - none of the other docs I spoke to up here would tell me what I should do, nor even offer much opinion at all. Their leaning seemed to be, tho, that I was over-reacting. The trouble was that none of them knew as much about my kind of cancer as I did. It is extremely rare. They all underestimated my risk, in my opinion. I was extrapolating from a similar type of cancer where the risks of cancer occuring in the other breast are pretty well established. One of the docs was at Mayo here, and when I quoted a study saying I had about a 30% risk, he said, "Oh no. I think that's way too high. Where did you hear that?" And then I pulled out my study - done at Mayo Clinic!
Anyway, no one would help me much with my decision about whether to have that other at-risk breast re-stuffed (as i like to think of it). So then I had my consult with Dr. Stolier. It was the day before my scheduled surgery. He came into the room and started talking about my kind of cancer and he'd even read my surgery report about the other breast (where the surgeons were kind of all thrown for a loop when they got in there and found so much cancer - and so weird-looking, at that). Anyway, he said to me, "You're making the right decision. 30% is too high a risk."
I almost started crying. Seriously. He was the first doctor to tell me that I was making the right choice. It's like no other doctor would take any responsibility for telling me anything, or for even bothering to find out about my kind of cancer - even tho I handed them my sheaf of papers from all the research I'd done. But Dr. Stolier took a stand. He stuck his neck out. I think he was brave, even. So I just want to tell you that he doesn't always lean one way or the other on this mastectomy business. He isn't a doc who just always says, "Oh, you don't need to do that." If he thinks that a mastectomy isn't what you need to do, give his opinion consideration. I just wanted to tell you my story, for what it's worth, if anything...
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Thank you... this decision is driving me crazy... What I am doing in the meantime is I have asked NOLA to go forward with pre-certification AND I have scheduled a simulation for rads AND requested a second opinion from the Cancer Institute of NJ AND am meeting with my MO on Tuesday... I can't do any more than that... One minute I am convinced I will do rads and literally the next minute I am ready to do the MX... but interesting, when my husband played devil's advocate with me, I heard myself leaning toward MX (defending it almost)
As for the shoes, I did not give names, just that he was known for his shoes....
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Bdavis, I have been thinking about your situation as well. I was in the exact same place and had a similar response to my husband or anyone who took the non-mx approach... Im a bit woozy yet but want to get a few things across. Before I forget ... When you do the rads simulation do not let them tattoo you. It is for THEIR convenience and can certainly wait (actually you can insist on temporary marking, even if you go thru with the rad plan. ) I know this seems very trivial, but I was dealing with the big questions at the time and did not have the psychic strength to fight about a little dot..I ultimately went the BMX route and feel really annoyed when I look down and see that little dot. My chest is a mess, not a pretty site at this point, but that little dot in my cleavage jst seems to represent the parts of this journey where I have felt mistreated. OK. Enough about a one mm tattoo!
It is certainly true that the word on the street-- the medical street-- is that survival is unchanged with lump/rads vs BMX. This stat has never really made sense to me since any local recurrence ( same or other breast) has the potential to be bad...and itself has the potential for distant recurrence. I felt that Id been lucky the first time --size of lesion, hormone receptor status, etc. The idea that i could get another breast cancer and have things be completely worse was more than I could bear. It is true that you still always have to worry about distant recurrence, even with MXS, but it is one less thing... Many women, and this is "anecdotal", not research derived, were surprised ( or not... I actually had a strong intuitive expectation of this...) to find on the path report of their good breast, that there were early atypical cell changes , or even cancer. True, that these may be findings that were never going to evolve into problems ... The science is just not there on that issue yet, but it felt to me like a big " whew" and confirmed that Id made the right choice. Sorry to go on and on, but now here is the most persuasive experience I had while making my decision. SIX times, (oncologist, surgeon, rad onc, 2nd onc, breast surgeon, etc), after giving me the usual spiel about equal survival stats, blah blah, I said....Okay, but what would YOU ( or if male, YOUR WIFE) do in this situation? Off came the glasses, they leaned way over the desk to get closer, looked me in the eye and said with absolute unwaverying conviction... "I am a doctor...I would do the most definitive thing. I would cut them off !!" No hesitation, no survival stats. Doctor to doctor. When I realized that this was so clearly a situation where the party line is not AT ALL what they would choose for themselves , or a partner or a colleague...my question was totally answered. Not one doctor told me differently.
I hope this helps. Sorry for the typos. My ipad is hard to type on.
Rogam, I am making lists for you!0 -
Such a personal decision... I know the first time around with DCIS but WITH plenty of other spots that they were "watching and biopsying", the thought of a BMX seemed crazy, out of the question... (such a small noninvasive spot, such a seemingly drastic idea) but knowing what I know now... about the fallacies of mammograms and MRIs and Tamoxifin even .... and the illusive nature of breast cancer, I wish I could rewind time. I certainly would have opted for the BMX ..Hindsight is 20/20. Sucks. Everyone else's stories somehow you take with a grain of salt when you are trying to decide for yourself. It's tough. You think "well, that won't happen to me" ... at least that's what I told myself because I wanted to believe it. Yeah, Jerusha... when I look down and see that radiation tattoo it reminds of me of all that radiation I really had for no reason as I ended up with a BMX later... ugh.
And... the last thing I want to do is cause people anxiety about their decisions.. the opposite! There are many many instances where people have one cancer and they are cured for life... I wish I had been one of them!! But I think it's important to hear about the bad crap too when you're trying to decide something so important... this is a tough stupid disease, right... the only power we have is knowledge. I think....
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well home sweet home!!! Had no problem with tsa. My feeling was that we were on a very early flight and arrived at 5am. at the curb the driver got the skycap to get me a wheel chair, which she pushed me to security. they made me get out and walk thru metal det and hubby went thru scanner (no pat) and we were on our way...2 flights and 7 hours later....theres no place like home!!! Thanks everyone and thank you spring for keeping this page it was such a blessing to me on my journery as I sure so many would agree!!!! love dawn
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So glad you're home, safe and sound, Dsny!
BDavis - I had a similar thing happen to me, in that when one of the docs was telling me he thought I was over-reacting (the Mayo doc), I found myself getting really upset and even starting to cry when he left the room. At that point, I was worrying that if the doctors didn't think I needed the other side done, then maybe insurance wouldn't pay for it. So I was feeling that my decision would be taken out of my hands. I realized, then, that there was a part of me that wanted that other breast done. I mean, why wasn't I happy that I was being told I was over-reacting, and just go home and forget about it? I had ample docs tell me to do just that. So when you find yourself arguing it one way or the other, I think it does say maybe what you feel in your heart of hearts. I can say that in retrospect, because I'm glad now that I had it done (and my other breast did not have cancer, as it turned out, but there were bad things going on...). Also, another thing to take into account is how well your cancer showed up on whatever it is you'll be monitoring the other with. Mine was barely discernible, even tho it filled up almost my whole breast! So I never had much faith that they would catch it in the other breast at an early phase. I barely squeaked past having to have chemo and didn't want to ever come that close again. Plus, my contralateral breast was at very high risk. I don't know what it is in your kind of cancer. Tho I always figure that if my body let cancer get this far once, why wouldn't it do it again? I read a study recently that 99% of women who have PM have no regrets. I think that could be because it really is a huge relief not to have to worry anymore. No more mammos for me! Good luck on a very, very difficult decision. If you still aren't sure what to do, you can always give yourself more time...
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Thanks Ladies...
Jerusha... the thing about asking the doc what they would want their wife to do, Stolier said radiation... if he had said MX, I may have questioned his intentions, and he says radiation... that makes 4 doctors, and hence my problem.
And Minnesota... unfortunately, I don;t have time to think... I either need to start rads with simulation next Thursday or have the MX... and I can't delay the rads or I might as well not do them... so once I decide, it will be final... and that is why I went to NOLA.. I didn't want there to be any unanswered questions, and of course, I am glad I did as I was told I need 4 flaps, so a big big surgery.
About the stacked flaps, besides Springtime, who else has done this? Please chime in and tell me your story... I am ok with a big surgery and a longer recovery than clearly the rads would be, but I do need to know that my body will look proportional after and that I will feel GOOD at some point and won't have lingering pain.
Anyone??
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My 2cents. As someone who had lumpectomy twice, 6 weeks of rads and a recurrence less than 4 years later I am so happy that I had the BMX/DIEP. I did not have chemo so that could be the game changer but I feel so much better with the MX than I ever did with the LX. I don't envey you the decision but I think that at the end of the day the decision is what makes you feel better about the treatment and not your DOCS.
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OMG! I go away for a few days and so much happens! Thanks so much for all of the good thoughts. I'm happy the cyst was benign...now just keeping my fingers crossed for the full path report. Should have it by next Tuesday.
Cider, Amy, DsynDawn, Tigsun, Jerusha - Congratulations to all of you. Sorry I missed you but welcome to the other side of Stage 1! Rogam you're almost there too!
Amy - I am so glad you are doing better. What a scare! But as we all know - you are in excellent hands!
Cider - I too got stopped going through security even though I was in a wheelchair. They had to get the supervisor in. Put me in a private room, pat me down, did the thing with the powder and I kept offering to show my drains - finally I did and they covered their eyes and said I could go through! The letter form SCSH meant nothing.
Leslie T - welcome. We're going to be surgery buddies along with Dragon. I'll PM you and we can talk more. Looking forward to seeing you there!
ref - glad you have a date - wish we'd were going to be there at the same time with Dragon and Leslie T. Dr S marked me up for hip and diep but decided there was enough blubber just from my hips (although I think I could have gone for both. I was hoping to be a "C" but I'm still a "B" - hoping for a little more volume with Stage 2 next month.
Rogam - so sorry I missed you. Thanks for the love! I can use it
Jerusha - glad you're on the other side. It seems like a long road right now but all the sudden you start feeling better and it speeds up. I know the last thing I could think of was doing stage 2 - but about about 8 weeks out I was jones'n to go back! Of course now it will be 5 months between stage 1 and 2 ...and I can't wait! Also, thanks for the heads up about the Duvets. I'm forwarding your post to my husband so he can be sure to remind them we want fresh covers when we get there.
bdavis - so sorry to have missed drinks with you too. And sorry that your decision is not so clear cut. You have heard many women much more knowledgable on this than myself - but even before I knew about my BRCA status I was very concerned about the radiation - and even though I had less than 1cm area of DCIS I found myself wishing that I felt comfortable with a MX. In the end the BRCA made the decision for me. Of course, you must do what is right for yourself. We can all say what we would do -- but you need to do what feels right for you. I don't think there is a wrong decision here.
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I have spent some time on the radiation threads, and it seems that many women get bad burns, or they are all coming to the thread to post and all the healthy-skinned rad girls are not posting... I also read that once you have radiation you need to avoid the sun?? That would be hard... My tumor was upper inner quadrant right on my tan line... so the radiation would for sure hit my chest... how do you keep that out of the sun forever?
All makes DIEP look like a cake-walk (sort of)
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And Kathryn... glad you are better now and sorry we missed you too... perhaps another time, another stage...my stage II and your stage IIb??
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Kathryn is right. In the end, only You know what's right for You ...
My skin got slightly pink with 33 rads but it went away and by looking at it, you'd never know.
But everyone is different that way too. Good luck with your decision BDavis and good luck Rogam and NoWords!0 -
bdavis -
I had to have a MX and Rads. I opted for neo-adj chemo...1 of my 4 Docs at Mayo thought that I should have a bilateral even though there was no evidence of cancer in the other breast. I was scared and in shock and though I considered a bilateral, so that "I could just get it all over with at once"....the idea of "do the least harm" seemed to prevail for me. A recurrence in the breast or a new primary are less of a worry really, than mets to me. Removing a healthy body part did not seem like a great idea at the time. In the end, I chose to just deal with things as they present. I am two years out and getting ready to have stage 1 stacked Diep next week. If I end up with ILC in the remaining breast, I guess I will deal with it then. I would have to have flaps from another area for recon, and have to go through it all again. I hope I do not have to deal with that...but I guess I will if it happens. For me personally, I don't think there will ever be enough things that I do, that will prevent me from thinking about a recurrence or mets from time to time...it is just a shadow that follows...
I think that there are women who still go in the sun - even after rads. Use common sense. Fear of everything is no way to live....Rads was harder physically for me than the MX, but mentally and emotionally the MX was harder. I did burn and I was tired from rads but I healed. The anticipation and worry before everything was worse than any of it actually was...hoping the Diep is the same!
I hope you can make a decision and be comfortable with it for now. I did not have the options that you have. Do the least harm always worked for me.
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Thanks nowords... I hear ya... not sure that its my motto, but I get it.
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It is good to read everyone's comments: Like we all say, there are some commonalities--but everyone has to make their own decisions regarding treatment. Personally: I was BRCA 2+ and my mom had breast cancer twice and died from ovarian cancer. SO I CHOSE TO BE THE MOST AGGRESSIVE IN MY TREATMENT WITH: NEO-ADJ. CHEMO, MX, RADS, ETC.
I WISH YOU ALL THE BEST IN YOUR FUTURE CHOICES AND DECISIONS!
AS FAR AS THE BURN PARTY FROM THE DOM-- LMAO!! I WILL PROBABLY WAIT A BIT AND SEE IF I CAN HANG IT FROM THE CEILING AND RUN AND JUMP INTO IT!!
BEVERLY AND AMY: I WILL BE IN RALEIGH THE WEEK OF JUNE 19TH WHILE MY DAUGHTER IS AT SUMMER CAMP--LET ME KNOW IF WE MIGHT MEET UP.
LOVE YOU ALL, HEATHER
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Kathryn, YAY! So good to hear from you. Everything seems to have gone as well as possible, so , PHEW!!! I hope you can now enjoy making your plans. My 10 days in New Orleans have come to an end. We leave for the airport at 6. This has been an amazing experience. I feel like I want to tell the WORLD about this wonderful place and superb doctors. I am so delighted and grateful to be going home with warm soft jiggly breasts. This is not the first time I've come home with twins. Whoever thought, 18 years ago, Id be doing it again with THIS KIND! haha. As we have all learned, you never know what life holds...
BTW, Kathryn ... Not just the duvet cover, ask for freshly washed duvet and blanket!! You must be a girl after my own heart
Rogam, I promise I'll send my list.. from home!
Bdavis, this is the hardest time. You have heard a lot from women on these boards about the pros and maybe some cons of surgery. Are you reading a lot about the cons of radiation? The week that I had to make the same decision as you, the New York Times ran a special series on radiation. Every darn day there was a front page article and two full inside pages. It felt like a torture regimen designed just for me and was so upsetting, but it really gave me a lot of info and helped a lot with my decision. Im sure you can access it if you want.0 -
bdavis - this is a big decision... Everyone has their reasons why they did or did not have mastectomy. My breast surgeon left it up to me. My tumor went from nearly 4cm at diagnosis to less than 6mm after chemo. I decided that I NEVER EVER wanted to have to do chemo again, if I could help it, so I opted for a mastectomy. Once that was done... it was up to me on the rads. Because my 2 nodes that they knew were positive before I started chemo were so highly involved (very large and positive on PET and US) - I opted to do rads. Out of my 3 MD's - one said definitely rads, the other two said it was up to me. I chose rads in addition to the mastectomy - because I wanted to be as aggressive as possible. I am BRCA negative, but when my sister was diagnosed w/BC almost a year to the day after I was - that was the last straw for me - 7 months later I was having the left breast removed as well. Our family history is strong for breast and uterine cancer - and again, I didn't want to have to do it all over again. My goal was a life without more cancer... and a long life at that. So far, so good (knock wood). Do I ever have regrets on having rads? Yes, I do. I often wish that maybe I would have only let them radiate the chest wall and axilla, but they also did the supraclavicular nodes and I wish they wouldn't have so that I would have better lymph drainage there. Do I ever have regrets about the mastectomies? No - with the exception of realizing that I would not be able to breast feed my second child (got pregnant 3 months after the prophylactic mastectomy). But once I got over that hurdle - no regrets. I am not saying I didn't miss my breasts - I DID... but I was also completely without - first on just the right, then once the expanders were removed - on both sides. Now that Dr. Sullivan put me back together, I am one happy camper and do not miss my breasts at all! And I actually think my husband likes these bigger ones anyway... LOL! You will figure it out and you will make the best decision... the one that is right for YOU!
Kathryn - I ended up having my hysterectomy between stages 1 and 2 - and it ended up being 7 months between the two stages. It is actually not a bad thing, because it allows things to settle even more than they would have. Fingers crossed that the rest of your pathology is benign.
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Jerusha - YES, the bedcovers in hotels are disgusting. The first thing we do when we get to a hotel is fold them up and stick them up in the closet! Then I start going over the hotel room looking for bedbugs and using an all natural bedbug spray on the bedding just in case (we get it from Magellens on line). My kids always want to run in and flop right on the beds... we are such party pooper parents.... LOL... AND we make them wear flip flops in the hotels - the carpets are usually disgusting too - even in the most upscale hotels!
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Hey Nordy, let's take a trip to somewhere FABULOUS together!! We can completely indulge ourselves in germ and infestation phobia!!!
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Betsy, Stephanie also had stacked flaps and she looks amazing. Her result is so gorgeous that she was asked to fly back to NOLA for photos for a presentation the doctors did on their stacked flaps. I'm sure she would be happy to talk to you if that would help, and show you photos. I'll get in touch with her and ask her to chime in here. Dr. D and Dr. S are very good at sculpting and lifting where necessary to restore natural contour after the flaps are harvested. I don't think you need to worry about that at all--most of us look better than before! These surgeries are superficial, and don't invade any body cavities or cut any muscle, so I don't think you should concern yourself much with lingering pain either.
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hey ladies - before I forget:
Springtime - can you add me to the list above for my next surgery?
August 16th - Stage 2 NS+SS PBM w/DIEP with Dr. D plus LSH with Dr. Von Almen
I don't have much comment on some of the more recent conversations as I'm a 100% prophylactic girl. But being BRCA1+ with an absolutely wicked family history (no female relatives living past the age for 45 without surgery) I decided to take a radical course of action. I'm now 15 days post op and I know 100% that I made the right decision. As I'm about a week ahead of a bunch of people on this thread let me share with you some amazing milestones I've reached over the past couple of days:
- cooking a complicated meal! (day 11)
- going off narcotics! (day 12)
- driving! (day 14)
- last drain removed! (day 14)
- sleeping through the night! (day 14)
- wearing skinny jeans! (day 15)
- not wearing a bra! (day 15)
Every day I can do more for myself and every day I'm a little less sore--the mastectomy and DIEP were some of the best decisions I've made recently, along with the decision to fly to NOLA for the surgeries. I also realized today that it had been over 2 weeks since I was consumed with thoughts of dying of BC or OVCA. That in and of itself has made this whole journey worthwhile. It's a very personal decision of course and I wish anyone going through the decision of making it the best of luck. All we can do is weight our risk for ourselves and decide how risk adverse we are. If you can sleep at night that's probably a good indicator that you made the right decision for you. Looking forward to hearing about how everyone else is progressing...
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All of you ladies are so helpful.. I do know that a week from now, one way or another, I will have made a decision... so that is comforting in some weird way.
Insult to injury, my son is sick this week with some unexplained pain, so at 1:30am last night we found ourselves back at the ER (second time in 2 days) and he is now admitted and will be here til Sunday maybe... Too much stress in my life... and I was supposed to drive to Ohio today to get my daughter from college... UGH
And Jerusha and Nordy... I am coming to your hotel party... When I was in St John in March, I had them change all bedding TWICE.. wanted it straight from the wash and had them DEEP clean the room before we went in... I just LOVE cleanliness!
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Betsy - I am so sorry to hear about your son. Hope they figure out it out soon and he's home and feeling better soon.
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Thanks Kathryn... never a dull moment.
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Kathryn - I'm glad you are on the mend. Before you know it you will be back at NOLA completing the job! I will be post-stage 1 by then. How crazy is that!
Betsy - I hope your son is okay. I sent you a PM.
Denouement - I really appreciate your daily milestones. It gives me hope that I can get through this - and get through it well! Thanks.
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