NOLA in September?
Comments
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bdavis-I finally understand your quandry. I think that your comments in your last post are true. Decreased risk of local recurrance with mastectomy but decreased regionally with radiation. So, I think that it comes down too which will you be able to sleep better after. With a micromet in 1 node most people would probably say radiation now and MX later is overkill but that doesn't matter. What matters is that you make the decision that you feel best about! I hope that your MO and RO together can give you some guidance.
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nordy, can you please explain what you mean by "cell changes" showing up in lymph nodes removed post chemo? am not understanding and would like to, thanks Rosemary
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Rosemary... I think what she is saying is that she had positive nodes prior to chemo but they changed during chemo and then were removed and were clear of cancer... saying the chemo cleaned out her nodes.
This is good all around for all of us in chemo, saying that chemo does indeed work...
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You all are such smart women! BDavis, let us know what happens with the two docs consulting...
Now that Nordy mentions it, I do remember another lady telling me she had chemo before any node removal, I think it was. After the node removal, they could tell some of her nodes were "involved" because of the changes they saw.
NOWords, do you want your date added to the listing above? Let me know your specifics if you do, would be happy to add you...
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I had chemo before node removal and still had 7 of 22 nodes positive with extra-nodal extension. I had ILC though, and it was thought that I would have little response but given the size and fact that it was millimeters from chest wall they advised it was worth a shot to try 4 Dose Dense A/C.
The pathology after surgery stated "no response", but the feel and shape of the breast changed and the blood flow of the MRI showed a huge difference. PET after surgery showed nothing, but I have heard that ILC may not show on PET...so much info...lots of conflicting stuff depending on studies and opinions....
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Bdavis.did you have an oncotype test done? It is very useful in planning treatment. Here's another approach I found hepful. After tellng me repeatedly and emphatically that bilat mxs were unnecessary, over the top, driven by anxiety not science, etc I would say, "well, dr...what would YOU do in this situation or what would you advise your WIFE do.. Off came the glasses, they leaned forward over the desk, looked me in the eye and said,"ME, MY WIFE, no brainer....mastectomies of course.
And this same exact scenario occurred at least 6 times. Pretty powerful.0 -
hmm, well i would love to know what this really does mean cos i am the flipside of your friend springtimeie that means i had an unnecessary surgery to have node removes so that i COULD have chemo first..that is how it was explained to me. if I dont do it now, the information will be gone if there was any node involvement and it is lost forever..am trying to imagine what cell changes there could be...these days they can get it down to finding ONE cancer cell ( altho can take a week+ with staining) in lymph....but a dead cancer cell, does that hang around?...is that what they mean? i wonder..0
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Jerusha... I have not asked that question to my docs... My BS is a woman and clearly is a preservationist (everyone around here knows that about her)... I did not ask my MO, nor the RO... but in the end they all (including the RO) said they supported me if I want an MX... I want support, but I also want SUPPORT... know what I mean?? I don't want them just saying, "Oh, ok... I guess so, I support you." I want them say, "Yes, that makes perfect sense and is a smart move."
And no, I did not have an Ocnotype test... My MO said I was havinc chemo regardless due to node involvement, so I said ok.
So Jerusha... you had a choice? And obvioulsy chose the MX since you are there now...
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I had a LumpX and RADs, no chemo. Less than 4 yrs later a recurrence. If I had had the MX in the first place I would not have had a recurrence. I had wanted an MX to begin with and was talked out of it by my Rads Onc. Sometimes you just have to go with your gut and do what feels right for you. After you get all your info you just need to weigh pros and cons and do what feels right and don't look back. My Onc said the worst thing you can do is look backwards but you all know that you will. With that said I think you can sit down with a piece of paper and do a pro/con sheet for each procedure and then pick the treatment that feels right. In cancer I don't think that there is anything you can do that would be overkill.
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NoWords, I added you to the listing above for May 27.
Sno, you are right. Best to do your research and go with your gut. But let's all remember how freaked out we were to learn we had BC. I think we all need to pat ourselves on the back to have gotten through this whole thing as far as we have to date!!!
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Snobird-- that depends on whether you weigh in the impact of potential or known side effects.
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OMG, i just did it again. Spent fom midnight til 3 last night typing then inadvdertly erasing my posts. Just did it again.Ack! My surgery was quick and smooth lasting 4+1/2 hours rather than the five hrs planned. Dr Massey made a surprise visit on Wednesday at pre- op. Then came back at 6:30 AM to personally wrap my hand and arm. So lovely and generous of her. And my hand was great during the surgery. Once back from recovery I was pretty uncomfortable, If I lay perfectly stilll and kept hitting the buton on my PCA, I was ok .Spent the day and night drowsiing..Today did not start out well. I was frustrated about being unable to maneuver enough to get comfy.Just as I was starting to cry, the LE therapist came by and did some very pleasant MLD massage which significantly improved my mood. Then my iVs were stopped, my catheter removed, and i was a happier camper. I got out of bed, sat in a chair for two hours, and walked around the unit 4 times. Everyone has been amazingly accommodating. The nursing care has bee been excellent. fMy night nurse told me to go to bed and get some rest as i have a very big day tomorrow. Really, Im thinking, just what could they have planned. SHOWER DAY. HA HA. The event of the day!
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bdavis, I've been thinking a lot about the decision you have to make, and recalled how I struggled with my own decisions. ***Warning: my honest opinion ahead! Stop reading if you don't want to hear it!!**** I'm going to stick my neck out and say to you that knowing what I know now, and seeing the recurrences that I have seen, I would probably take the same approach that Spring did if I were in your shoes----skin-sparing mastectomy in NOLA with immediate implants/alloderm, do rads, then return to NOLA for flap reconstruction. That micromet was a met. Mets kill. They killed my mom. This cancer is a beast, an awful and sneaky beast that ruthlessly takes the lives of far too many women. This is YOUR life you are talking about, and you have to be your own advocate. Do what makes you comfortable, because YOU are the one who has to live with the consequences. I heard something many years ago after I suffered malpractice and outright betrayal in the hands of a greedy optometrist and an incompetent LASIK surgeon ----"Be careful what you agree to do when the risk is all yours". Maybe that will help you decide. My heart goes out to you!
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BDavis - It is never overkill when you are trying to survive and live your life cancer free - and I don't think anyone on this thread would ever question your decision once it is made. I have said this before and Toomuch also said it above - we make the best decisions we can at the time given the information that is available. Hind sight is always 20/20 and none of us have a crystal ball... at least I don't think any of us do... LOL And I agree - that since you had micromet involvement that it would probably not be beneficial to remove more nodes. However, I am NOT an oncologist... just my opinion.
Louis - If I had not had such large nodes and such defined nodal involvement - they would have done a sentinal node biopsy prior to chemo so that they would have that information prior to wiping out the cancer. Personally - I think when there is large scale node involvement, it is easier to see cellular changes from chemo - but if someone had micromets, I don't think it would be so clear. Since it was more than obvious that I had nodal involvement, they opted not to bother taking any out prior to chemo.
Rosemary - Yes, BDavis is right. I had positive nodes prior to chemo - quite large (one was over 2cm) upon diagnosis and positive on US and PET. The chemo obliterated the cancer within those nodes, but the pathologist's report noted changes within the cells. I will have to find my path report tomorrow (my hubby is sleeping in the same room that I think it is in) and let you know what the exact wording from the path report was. BUT it stated cell changes were present.
Snobird: My Onc said the worst thing you can do is look backwards but you all know that you will. Now isn't that the truth.
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Jerusha - Do you have a sign up? i walked around the unit and i saw kaitsmom and dsnydawn. i have mine up also. i should be getting discharged later today. i cant wait until my iv is out.
walkin around has been the hardest part for me. my back muscles apparently arent used to being worked.
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Jerusha - Do you have a sign up? i walked around the unit and i saw kaitsmom and dsnydawn. i have mine up also. i should be getting discharged later today. i cant wait until my iv is out.
walkin around has been the hardest part for me. my back muscles apparently arent used to being worked.
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Wow, you were up early. I will put up my screen name this AM.
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Sorry I haven't put up my name sign. I haven't felt like it. I've stayed an extra day and should leave this afternoon. I've been crying today. I'm very nervous about leaving. I tried going down on pain meds yesterday which in hindsight wasn't the best. Everyone has been wonderful but the surgery and healing itself is very unsettling to me. Plus I'm anxious to hear back on my pathology. I hate feeling this way. I know it will get better but waiting sucks!
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Walking gets easier with every day....reward yourself with an icee! that helped motivate me to walk about :-)
Yesterday I was out shopping with my mom--must have stood/walked a total of 3 hours..sure I needed a nap afterwards but it was great progress. I always know when I've been walking too long as i start to hunch forward--that means it's time for a nap and a perc!
Cider - sorry to hear you are having a tough time. Did you get the card i left for you? It does get better, every day...it's definitely challenging...here's hoping you get good news back. I've stuck with 1 pain pill every 4 hours even 10 days out...not ready to go down yet...all the ladies on these boards told me not to go down until I feel i can make it that long with needing one....hoping that is soon...
Who was your BS? Mine was Stolier and my surgery was on a Wed--he called me on Mon to tell me all was clear. Hope that helps in terms of a rough time frame for hearing back...
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HI LADIES: GOSH-- SO MANY UPDATES AND SO MANY PAGES TO READ! HOPE YOU ARE ALL DOING WELL. I HAVE BEEN SOOO BUSY SINCE COMING HOME: MY DAUGHTER, MICHAELA HAS PIANO RECITAL, DANCE RECITAL, ALL THAT YEAR END STUFF!
I AM STILL SO AMAZED THAT DR. S WA S ABLE TO DO AS MUCH AS HE DID IN ONE SURGERY. AFTER THREE PLASTIC SURGEONS BEFORE: I REMEMBER MY HUSBAND JUST SAYING TO HIM IN THE CONSULT: "PLEASE JUST DO WHAT YOU SAY YOU CAN DO --BECAUSE MY WIFE CANNOT TAKE ANY MORE DISAPPOINMENTS." AND HE DID EXACTLY THAT! AS FAR AS I KNOW WHAT DR S. DID WAS: REVISE SYMMETRY ON BOTH SIDES, RE-DO NIPPLES, REVISE ALL SCARS WITH DIEP, SGAP, AND LAT. FLAP THAT I HAD PREVIOUSLY DONE, REMOVE NECROSIS AND A LOT OF LIPO!
I WOULD STILL BE OPEN TO REVISIONS IF I NEED THEM, BUT I WILL JUST WAIT AND SEE HOW THINGS HEAL UP! FOR THOSE OF US THAT HAVE TRICARE STANDARD: WE CAN ONLY GO TO FAIRWAY-- BUT THAT WAS AWESOME TO ME! I THINK I WAS THE ONLY ONE ON THE WHOLE FLOOR THAT DAY! THERE WERE MORE NURSES THAN PATIENTS WHICH IS UNHEARD OF! ALSO, I WAS VERY PLEASANTLY SUPRISED THAT I HAD NO OOP EXPENSES!
I WOULD RECOMMEND NOLA TO ANYONE IN THE FUTURE! FOR SO LONG, I FELT SO INCOMPLETE AND LOP-SIDED! FOR THOSE OF YOU THAT KNOW ME: MY WHOLE RECONSTRUCTION ORDEAL HAS BEEN OVER TWO YEARS! WHEN I LEFT NOLA, I CAME BACK A WHOLE NEW PERSON!
MY HUSBAND AND I ALSO HAD A GREAT TIME TO RECONNECT: WE WENT TO SO MANY GREAT PLACES AND ALSO JAZZ FEST-- I WOULD LOVE TO RETURN THERE AGAIN SOON! WE HAVE SOME GREAT FRIENDS IN BILOXI AND EVEN MADE IT DOWN THERE FOR A DAY AND A NITE!
I WISH YOU ALL THE VERY BEST!! IN MY HEALING ODYSSEY I HAVE LEARNED THAT WE ALL GET THERE TO THE END OF OUR JOURNEY, SOME HOW SOME WAY! ALTHOUGH I AM A REAL VETERAN OF FLAP SURGERIES, I NOW FEEL LIKE A GRADUATE FROM NOLA! IT WOULD HAVE NEVER BEEN POSSIBLE WITHOUT SPRINGTIME! THANK YOU SO MUCH!
XXOO HEATHERBLESS
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Touched by a Butterfly
Dear butterfly,
Majestic monarch of the sky,
holder of universal secrets and reasons why,
color my canvas, touch my heart before I die,
to live in joy, teach me how never to say good-bye.
As you flutter by, you hear me sigh,
things missed because I forgot to try,
on your serene beauty I can rely,
oh what celestial magic you do supply.
Once you did struggle to be free,
you turned your life around to show me,
amazing my angel how you heard my plea,
you've cocooned my mind so I can see.
Lets fly together both as one,
and sore beyond time, once upon,
our silken wings God has spun,
Souls entwined, our infinite journey has just begun.
for you kat! I love you, heather
FOR MY IDENTICAL TWIN SISTER KATHY: MAY YOU REST IN PEACE: 10-1-1967 TO 05-12-2010.
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Hi Ladies,
Sorry for not checking in sooner and for missing those of you at St Charles. We have run into some problems and because it coud not be determined if it was lung, heart or what, Dr D transfered me over to Jefferson yesterday. I am still somewhat in shock in all that has gone on, and am exhausted trying to deal with this as well as drains, pain, wound care etc. Right now it looks like I have a collapsed lung. I have debated whether to post or not because I didn't want to scare anybody. The center has been very good, The whole damn thing has me scared, especially when they thought I might have had a heart attack!. I am so down and discouraged. Even if it heals quickly on its own and they do not have to do anything, I still cannot fly for 6 months, minimum. So that makes getting home a whole new ball game, let alone all plans for summer, visiting daughter, etc out of the quesion. I cannot imagine sitting 14 hours in the car to get home. So far the flaps have held up, but I don't know what willhappen since I have had ultrasounds done pushing on them, EKGs, ECGs, tons of blood draws, IV inserts, etc etc. I am too tired and sad to write more. I am hopeful that it is a small pnuemothorax and they will not want to intervene and they will send me back to St CHarles to get some rest before I am discharged and go to the hotel and figure out rental car, hotels etc.I hope I will still get to the Homewood to see some of you and I hope you will all keep me in your prayers. What a nightmare.
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Heather, I am so glad you are feeling beautiful and complete! Hurrah!!! You went through an aweful lot of loss losing your twin, and then all those surgeries. I am glad you finally feel whole, YOU DESERVE IT and it was my pleasure to help you.
Sandy, Thank you for saying you would do what I did!! For some reason, that makes me feel good.
Cider, you are not alone in feeling that way. Although I usually ride high while in NOLA, and zoom around doing everything even though I had surgery, I typically have a bad crash once I get home. I had a good cry one day at home after stage 1. I was also cutting back on pain meds and was not ready yet (but my constipation was not under control!) . anyway, you will feel better. Hang in there.
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OH Amy!!! You poor dear!!! I am so sorry to hear that about your lung. : ( I have never heard that before. and a car ride home!!! OMG... I will be praying for you, that some miracle will happen and you will heal and be okay. I am so glad you did not have anything with your heart...
WE ARE PRAYING FOR YOU.
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oh no kaitsmom......i am sorry to hear that. i saw your husband today and sent you my well wishes.
about driving home.....could taking the train help? the amtrak train station is near our hotel.
please let me know if you need me to do anything for you. i will be in new orleans until the 21st.
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Oh oh oh Amy. I have been so worried every time I passed your closed door. I knew something had gone awry. These early days are so difficult anyway , that medical complications must feel completely overwhelming. I think youve passed the most critical time for flap viability , so that is a very good thing, even though you are being poked and prodded. Make sure no one touches you without sanitizing their hands --that is a must in a regular hospital. Hopefully you will stabilize quickly and get transferred back here to the wonderful care of the St Charles nurses. Wat a scary time. Call me, text me any time of day or night if I can be of help - even just interpreting medical-ese or whatever. Ok? Looking forward to some visiting at Homewood
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oh Amy, so sorry to hear about this issues you are having. We are all here for you, whatever you need..please keep us posted on how things go as you feel up to it. You'll be in my thoughts...
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Oh Amy.. I knew something had happened.. I visited today and spoke with Dawn, Theresa and Jerusha and heard you had been sent off to another hospital... I know everyone plans to go down, have their procedure and fly home with their new breasts, but no one plans for complications. Did they tell you what went wrong and how you got the collapsed lung??
I was so glad to meet the three of you today... sorry i missed Cidar and Amy though...
Hugs to Amy
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Sending prayers up for Kaitsmom....I really hope that things get better for you.
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Kaitsmom - I am glad you posted. We need to know so that we can send positive vibes and prayers your way. I am sorry for the complications. I think everyone knows that there is no such thing as a surgery without risks. We all know that they do occur... we just wish they didn't!! I am hoping that things will turn around quickly for you. Do you have a chest tube in? That is usually how they deal with it. It is a pain, for sure, but getting you healthy is most important. But I completely feel for you and know that this has got to be so hard. Especially with the extended time away from home and now trying to figure out how TO get home. I am sending a million cyberhugs to you. Hang in there.0
