NOLA in September?
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minnesota - i saw your picture in a book at the center.
kathrynla - sorry we wont get to meet inm person. maybe another time. i hope all goes well.
i made it out the bed to the chair. maybe i can take a walk tomorrow.
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I am SOOOO confused... Met today with a radiation oncologist ( who I saw only to apease my surgeon) and I am now so very confused... Telling me that if I have a MX and recon instead of radiation then how do I monitor my chest wall... or then my nodes aren't getting treated... and the chemo may not have gotten to the scar tissue in my breast (which radiation would)... headed to NOLA and then need to make a decision ASAP... ugh.
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bdavis-Are you meeting with Dr. Stollier in NOLA? If so, I would definitely ask his opinion. I wanted a mastectomy from the beginning but due to scheduling logistics had a lumpectomy as my initial surgery. It turned out to be a good thing because then I was told I needed radiation with or without a mastectomy. My initial plan was to complete chemo and have the mastectomy, radiation and delayed reconstruction. After meeting with Drs Sullivan and Stollier, I changed my plan. I had radiation and will have the mastectomy and simultaneous reconstruction this summer. Talking with the docs in NOLA definitely helped to shape my plan. I hope that your trip helps you make your decisions too!
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BDavis and Toomuch, Why do you need rads ...wait, OH I see, you both had positive nodes. Oh cripes.
See I had to have rads too (I had negative nodes but the "mass" was over 4cm to start with) and even with MX they wanted me to have rads.
They can "overstuff" your rads side with more fat, to account for the rads shrinkage. This is what they typically do. I didn't have enough fat even for this, so when I had my Mx with Dr. Stollier, Dr. D put in "temporary implants" (with alloderm, no expanders) to get me through Rads. I then waited 6 months after Rads were done, then had Stage 1, 2, 2b, etc.
Rads, while it "treats" your nodes also messes with them, and there is a migher likelihood of lymphedema... just something else to keep in mind. And it does also sort of mess with your recon. Definately ask around and do your research! (Which BDavis, you always do!!!)
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Hi. No time to respond to the emails but thanks for your support. I am now racing towards the finish line so to speak. I leave for DC in the AM and come back Monday afternoon (not easy to get a reasonably priced flight on short notice). The thing is that the gyn/onc wants labs (good news I already had them done for NOLA), but a recent EKG and chest x-rays. Of course NOLA is closed because of the time difference - but does anyone remember (especially the recent stage 1s) if NOLA did an EKG and chest x-ray. I have a strong feeling they did but everything is a blur right now. Ooph is scheduled for 12PM on Tuesday. Have to do a liquid fast the day before (it just keeps getting better!) Wish me luck.
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Kathryn-Wow, you're busy! Have a great weekend in DC. Will be thinking of you on Tuesday. Compared to your Stage I, this surgery should be a breeze!
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Kathryn, my thoughts and prayers will be with you. Please let us know how everything goes.
Bdavis, I am so confused about radiation too. I had 2 fully involved nodes and 2 with isolated cells. My tumor was a grade 3 and over 4 cms. I was 44 at the time of diagnosis. I was told all during chemo that I would get radiation. Then when I scheduled my first appt with the RO he came in and said that I did not need rads. He said the only thing left to radiate was my chest wall and I have less than a 10% chance of recurrence on the chest wall. Radiation only lowered the chance by 1 - 2%. When I read stats of ladies with smaller tumors, lower stage, etc. I get worried that I should have had rads. I dunno. BC is still a mystery to me.
Susan
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Springtime... about rads... My BS and MO both had always said that I sould have lump and rads, no need for MX... But due to worries of recurrance and worry about radiation SE, and the hope of better sleep, I had shifted my thinking to have MX and recon and SKIP rads... after discussions with BS and MO, they didn't think it was necesssary, but understood, as I explained the dense breast issue, mammogram insufficiency, following a birad 3 in my good breast and a pappilloma in cancer breast... and said that if I had MX, didn't need rads since my node was MICROMET.
Jump forward to today, meeting with RO... He was saying "well, you only had 2 nodes removed... no full dissection, so maybe you actually had more positive nodes... " and "chemo doesn't irradicate cancer well locally, so even after MX you have a 5-7% chance of recurrance... how will you monitor your chest wall.?"
It all just gave me pause... and he said more than once that lump/rads has same survival AND recurrance odds as MX... I have not heard that from anyone... yes, to survival, but not recurrance... and then I said I was doing bilat MX... and then he finally said that based on everything I've said, perhaps I should get a MX, and rads on top of that would be overkill, since its true I probably only had micromet and no further node involvement...
Sounds all convoluted, right?? I don't want overkill, and I don't want to constantly worry... he did suggest that if I get MX, that I get yearly MRI for 5 or so years to monitor chest wall, the most likely lcation of recurrance.
Please chime in...
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Hi Kathryn, I'm in bit of a pain med stupor,So if this post is a little weird...
But ,yes , I did need to have EKG and chest ray.
I will PM you or email. You are in my heart .0 -
I know for stage 1 I had the EKG, blood work and the chest x ray. For stage 2 it was only 8 weeks later so I had to just do blood work I think. Now that I need the 2B, I have to do all 3 things again because it's been over 6 months since I went there last.
I did chemo, bi-lateral MX, raditaion and then recon.
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Yep, Kathryn. Like Jerusha said. We had to have a chest x-ray - I think within a year of the surgery. And I know I had to have an EKG for my first breast. I don't remember that I did with the second breast, tho.
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SAMayoFL & bdavis - I met with 2 RO and both recommended radiation but different plans. My first consult was in Aug,2010. I had 2 nodes that were completely filled with cancer, not micromets.My BS, MO and RO all agreed I needed radiation. At the time the RO said that the benefit was presumed but that no studies had been published supporting it yet. I started rads in Dec. When I went back for my planning session my RO told me that a study had just come out confirming the benefit of rads for women with 1-3 positive nodes. Then in Feb of 2011 another study came out showing no benefit for women with 1 positive node but confirmed a benefit in women with 2 positive nodes. Like most subjects, you can find research to support choosing radiation or not choosing radiation. So, it comes down to what you're most comfortable with. If you're feeling uncertain about the recommendations get a 2nd or 3rd opinion!
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I guess for me, I had no actual positive nodes. Some were slightly enlarged before chemo but they weren't removed and tested til after the chemo. Anyway, I figured like toomuch said you can find info for whichever way you look at it. Better safe than sorry, and throw everything I could at this nasty stuff!
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Kathryn - I'll chime in too and confirm that NOLA asked for EKG and chest xray--I had my done about 10 days before the surgery.
I'm at the point where I'm starting to think about Stage 2 (I want to get this all over with already!) I know they say to wait 12 weeks to schedule at the least, but when do you all thinks is a good "out of the woods" time with stage 1 to proceed? Just after the post-op or a couple of weeks more healing? That would put me in early August for stage 2 (so I might see some of you there!) and I'm also planning on getting a hysterectomy at the same time. One question though, what do people mean when they say for the reconstruction stage 2a, 2b, etc? Thanks ya'll--I'm still new to all of this :-)
Hoping all our surgery gals from this week are getting a little better every day--can't wait to hear about your progress!
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BDavis, I had a friend with same situation as you. She had micromet in one and did the NOLA recon route. When she had her MX, they removed more nodes (a few more, she had 8 removed total) and the idea was: if more of those were impacted, she would do RADs. If none of those were impacted, NO RADS. So during her MX she had more nodes removed, All clean and no Rads.
SaMayo - that is confusing. I sometimes wonder if I had RADs overkill. I had no node involvement and had MX, but my initial tumor before chemo was larger than 4cm - so I was told by ONC and Rads onc, that means I must have rads. So they blasted my chest, my armpit (which had NO nodal involvement!!, I guess, just to be sure?) and also my clavical area!! I honestly feel this was overkill, but at the time, I was so wanting to kill all cancer, that I agreed to a very aggressive treatment plan. That large tumor scared the crap out of me.
I go back and forth in my mind, if I had to redo it all over again, would I still do rads like I did - maybe I would not do the armpit or the clavacle, and just do the chest. But then recently, I had a scare - I had really bad back pain (turns out I really hurt my "rhomboid" muscle) but before I knew this I was worrying that maybe it was bone mets. And during that time, I remember thinking how glad I was that I did every aggressive medical thing, that I had no regrets.
This is all so hard to figure out, and I think takes a lot of soul searching.
BDavis, did you consider getting another Rad onc opinion? Maybe hear someone else's take.
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Kathryn, I am so glad you are sharing your story with us -- I like journeying along with you! I hope you have a wonderful trip! When you do the Ooph, are you having it done with one of those DaVince devices? I hear the recovery with those robitic surgery things is so much easier. I hope this is what you'll experience!!! 2 women told me it was a "cake walk" -- they had both done NOLA recon and then had the ooph after, and got 2 weeks off work!! But said they didn't need it, it was so easy.
Hope same for you!!!0 -
denouement - I had my stage 1 September 14th, and my stage 2 November 18th. So barely 2 months apart. I was ready, mentally and physically. I thought I had to wait the 12 weeks or more, but Dr S said if I was ready then go for it. I am scheduled for a 2b or a second stage 2, whatever you want to call it. I was a little freaked out about the nipple recon at stage 2 so I put it off til now. Also my left breast, because I have lymphadema on the left side seems larger, and I really think it's swelling but it stays larger so I want Dr S to reduce it also. I am hoping he'll do some lipo on my upper belly. My lower belly from the DIEP is nice and flat and I have trouble with the shape and keeping my pants where they need to be.
I had my bi-lateral MX, and my ooph at the same time. I really had no issues with the ooph. Just a few tiny little incisions from the davinci device I believe it was. I know my stomach was a little tender when I'd go to get out of bed for a few days, but it wasn't anything major.0 -
Springtime, the problem with removing any more nodes POST chemo when having Mx, is that the node information can be completely altered by the chemo, so not reliable anymore. Am afraid like you say there are no clear signposts for any of us about which route to take...and btw, thanks for noting it, but yes, that was me asking the Dr D about recon post chemo last week, Rosemary
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Springtime.. as Rosemary said taking my nodes AFTER chemo wouldn't show anything... the RO was saying had I had my nodes removed prior, he would have a clearer idea of what I needed... post chemo they will show nothing.
And toomuch, no one has recommended rads and MX, with my micromet... all my drs think MX is overkill and that I am a good candidate for lump/rads and no MX, but they all seem to hear me when I explain my reasons for wanting MX... one of which is to avoid rads, but after my meeting, that is less of a reason (less fear of rads), and more about best odds of avoiding new cancer/recurrance.
I guess for me, I have been saying all along that even with the same SURVIVAL rate, the two courses don't have the same RECURRANCE rate, but am I right? I wouldn't go through an MX instead of rads if I am not changing my recurrance rate...And after MX, if I still need to monitor my chest wall with MRI (as the RO suggested) then am I really getting that peace of mind I seek?
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My poor friend. It sounds like she had the extra nodes out for nothing after chemo then.
I find this whole thing a bit maddening. I guess it all boils down to: you do your research and make the decision that seems right at the time. And then put your head down and go. Years later they will find things out, but hind site is 20/20!!
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Its true... I think I will call my MO and have him talk with the RO and give me some clarity.
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Betsy, how many nodes did you have removed prior to chemo? your signature says 2, but was that all of your sentinel? ie did you only have two sentinel nodes( we vary) or was one an auxiliary?
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Betsy - sometimes I think the doctors make our lives so much more difficult. Are they really telling us the truth or do they have their own agenda? They don't admit how much they don't know and, as Springtime says, you have to do your own research and do what makes the most sense for you. You are great at getting the research done so I am convinced that you will find the right answer for you.
I am trying to get all the details in place for proceeding with stage 1 on June 1. I am finding that my local doctors don't want any part of helping me post-surgery. Both my BS and GYN said it is not their area so they won't see me for any post-op issues. I'm hoping my internist will be more supportive when I go for my pre-op tests but I'm not optimistic. None of them want the responsibility for another doctor's work. When I had knee surgery in April, I asked my PS about prophylactic antibiotics for my implants and he refused to give me any info about that saying it was up to the orthopedist. I'm feeling way out on my own here but if that's the way it has to be, then so be it.
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ref - I am having stage 1 in NOLA at Fairway with Dr. Massey and Dr. Sullivan. I had trouble getting my FP Dr. who is an internist to agree to help;she referred me to the plastics dept. in network, who did not want to take it because they were not sure how they would get paid. Finally, a great PA made several calls and got me connected to a general surgeon, in network and not far from my home.
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hi betsy, i only had 2`nodes rmvd during lumpectomy (pos) so during my mx dr stolier took out axillary but like you said i'm doing all this b4 chemo which i should start in about a month and if more nodes than rads after chemo...well i just took a couple of laps and after lunch, take a shower yikes i feel like tim conway shuffling down the hall haha
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Ref - You will be alright. Even without a local "helper" doctor - you likely won't need one anyway, and if something really goes wrong, the docs at the Center will fly you back on their dime. If it is just an aspiration you need done, they can order it through a local doc or imaging center if it needs to be ultrasound guided. You will do fine. It is so crazy that these docs aren't more willing to help out... Well, maybe once they see the finished product, they won't be so hesitant next time.
BDavis - I would TOTALLY get a second opinion. And it is not true that you can't tell anything after chemo. Although your nodes will show up negative (all of mine did - but they found 2 very large ones prior to chemo - both positive through ultrasound and on PET) - they do show cell changes caused by chemo... My surgeon and medical oncologist both explained this and I have my surgical pathology report stating chemo changes just in case anyone thinks I am blowing smoke! (So Spring - your friend's axillary dissection was not necessarily done in vain). Sometimes I wonder if I did overkill on rads too. Unlike Spring, I had positive nodes prior to chemo, but like Spring, they radiated everything: axilla, chest wall and clavicular nodes. My goal at the time was to live and raise my baby. I did not want a recurrance. I did not want mets. I did not want to die. So far (knock wood) I have met my goals, but since I have lymphedema there have been many times that I have reflected and wondered if rads were overkill. Well... I will never know, but have to be happy that I wake up every day to see my sweet girls' smiling faces. AND, I agree that I have never, ever, in all my research and talking to my oncologists (both med and rad) that there is no difference in recurrance rates. YES, no difference in survival rates, but my understanding is that there IS a difference in recurrance rates with lumpectomy/rads vs. mastectomy, with higher risk of recurrance with lump/rads. As for the MRI - many docs do recommend it - mine has not, but I am requesting it at my next follow up anyway. I want that peace of mind. To me - the mastectomy removed most of my worries and I still do self breast checks on my reconstructed breasts - just to monitor any possible changes. In the end, BD, you will research and do what is right for YOU. But I do think I would get a second rad onc opinion.
Kathryn - yes, ekg, chest x-ray and blood work are all required at stage 1 - and all are required again at stage 2 if it has been more than 6 months. I think that your testing from your stage 1 would be recent enough for your upcoming ooph??? Are you having Davinci? I had that and it is really not bad. But I would totally run out and get some Gas-x. It took the nurse FOREVER to get it to me in the hospital (even after my MD ordered it) and I was in a great deal of discomfort. Once that kicks in - you will be a billion times better.
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nowords - sounds like you have a good back-up plan. That it is this difficult to arrange is just so disappointng and a poor relection on the doctors' priorities.
nordy - I know you are right. I don't intend to need help. I find I am better off that way. Still, it seemed like a good idea to have a back-up plan just in case. It's pretty telling when my doctors won't even discuss it. I'll mention all this when I see Dr. S on Monday and make sure I have adequate help there so I'll know what to do.
bdavis - I agree with Nordy. My understanding is that survival rates are comparable between MX and lump/rad/tamoxifen but recurrence is not, with higher rates for lump. A second RO opinion is a good idea.
kathryn - I just got my pre-op packet and, yes, bloodwork, EKG and chest x-ray all required for stage 1. good luck tuesday!
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Spring-I like you had all 3 areas radiated and I have mild LE. It was a very aggressive strategy and yet, it still doesn't guarantee that I won't have a local recurrance or mets. You're so right that hind sight is 20/20. If my cancer had been diagnosed 7 months later, I probably would not have let them remove more nodes after my sentinal node came back positive. But I made the best decision I could with the information that was available at the time.
BDavis-Here's a link to a Breastcancer.org sso:post mastectomy radiation may be overused. I thought you may find it interesting.
http://www.breastcancer.org/treatment/radiation/new_research/20100306b.jsp
You're right that there is a decreased risk of local recurrance with mastectomy vs. lumpectomy and radiation but no overall survival benefit. There has been no documented evidence that there is any difference in the occurrance of mets.
Dsnydawn-LOL! I like your reference to Tim Conway. It's amazing to me how quickly women are up and around at the center! Hoping that you get positive news on the rest of your nodes.
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Thanks for your input... I have left a message with my MO to call the RO and come up with a concensus... I think the problem with me is my MICROMET... very very small nodal involvement, but involvement nonetheless...
NORDY... all tests prior to surgery showed no nodal involvement and the initial path report said I was clean, so they closed me up... The SNB was to take one SN, but there was a second node attached to the first and came out by accident, so just one sentinel node, and no swelling in any other nodes... so now that I am done with chemo, taking more nodes wouldn't make sense unless they visually see something of worry while in there.
I think all of my doctors agree that I dont need radiation AND a MX, but the question is which is better for ME to not have a recurrance... and the problem is I probably have a better chance LOCALLY with a MX but a better chance REGIONALLY with radiation... but I did have chemo which I thought would handle regional recurrance... and then theres the tamoxifen that I'll be on for 5 years... maybe I should have it all... radiation now and MX recon later... overkill, right?
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Cider8 - I walked around looking for your sign but i think i missed you.
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