Lumpectomy Lounge....let's talk!
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Fighter, since rads is a given for you I would recommend LX if that is your comfort zone. Recon after rads is problematic and I am spinning round and round with my decision making.
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MLP3 - So, what is cording? I've not heard that term, but as all my tightness has been worse and I also now have a thread of pull in my inner elbow area now, I wondering. Today at one point after being at the computer for only 15 minutes (working from home since I don't have ROM back yet), the pain under my arm to my back just behind the arm was so bad!! I was doing back squeezes, shoulder rolls (that's not nice on stitched breasts), wall crawls and anything else that involved stretching that I could do with limited pain (pain at least no worse than what I was experiencing). It was not nice at all!! I did not have this much trouble when recovering from my SLNB. Anyway, I swear I do short stints of stretching all throughout the day, but still can't get arm anywhere near over my head. I can sort of get it to my head to do a pony-tail right after a stretch, but wouldn't try that afterwards. Now way getting it straight over my head - not even close!
With regards to bmx vs. bi-lateral lumpectomy, at first that was what I was leaning to - and not sure that I wouldn't still go that route later on (and that's before I knew my pathology report that now has me at Stage IIIC (have not updated profile). There were a couple of reasons. One was I had a secondary tumor in the left breast that considering that I had a tumor in the right and left breast both come back positive - it was assumed that it would too. It was 3 cm from the already identified tumor that had multi-focal DCIS. Since I'm not huge breasted, the BS said to get both and clear margins would take too much of my breast for reconstruction. And, for symmetry purposes, he recommended the bmx.
The bmx thought horrified me, but I went to the PS to learn more. After that discussion, I knew I did not want implants of any sort (the replacing and other issues didn't seem right for me). I pretty much decided on DIEP reconstruction, but I wanted immediate reconstruction and my facility strongly recommends against that due to pathology reports on nodes coming back positive and indicating RADS are needed. However, the more I learned from talking to survivors and on forums, the whole expander process just didn't sit will with me. So, after much to do - I learned I could have a SLNB before main surgery (I learned this through research - not my surgeon). I had this procedure done hoping to confirm my nodes were negative. Well, one side they were - the other side - a big FAT no. So, that ruled out immediate reconstruction and put me before a MO.
Went to her and had my mind blown!! Everything had been - you have "good" markers and my ki-67 scores were less than 10%. And, while I had connected that positive nodes meant that my surgeon wanted to do a complete ALND and it put RADS on the table [and I did A LOT of research - getting the RO and BS to provide studies showing the statistics for ALND alone, ALND + RADS, and just RADS (I was very concerned about lymphedema odds) and I also did my own research and learned about ARM], I never, ever connected the positive lymph nodes to the need for an aggressive chemo. I left floored that the AC-T protocol over a 20 week period of time was being recommended. I even got my pathology report back that now indicates I have a total of 11 positive nodes and it wasn't until I was reading a line in a book on chemo that I'd downloaded to learn more that I connected the number of positive nodes to an increase in stage AND the reason an aggressive chemo protocol was being recommended. When my BS called with the report, I got fixated on the clear margins and while I now recognize he was beating around the bush about the nodes - he didn't come out and say it changed my stage (that would've gotten my attention). Anyway, now I'm still interested in bang for buck with chemo considering the low ki-67, but I do have a much greater understanding of why chemo and the particular protocol is being recommended.
Anyway, back to bmx decision - while at MO learned that I'd have 20 weeks of chemo, so that hit me that I'd have to have those expanders the 4-6 weeks prior to chemo starting, the 20 weeks of chemo, the 4-6 weeks before RADS start, and the 6-7 weeks of RADs. Next up was another conversation with the PS again and I learned I'd have to wait 6-12 months after RADS to begin reconstruction, so more time with those expanders and that's if I didn't have any issues with them that women often do. Well, that just put me over the edge. So, I decided to do that I needed to know about that remaining lesion on the MRI - figured if it did indeed come back positive for cancer then I'd at least be able to tell myself through everything that I'd tried everything and I'd had no option. Don't you know it came back benign. Benign!! I was stunned!! I had the BS take it to their board to have them evaluate if the correct spot had been tested. They all agreed it had - and the bmx I already had scheduled became a bi-lateral lumpectomy.
Now - that other benign lesion still bothered me; however, my whole thought at the time of surgery is that this bought me time to go through the process with no expanders. IF I later decided that bothered me too much - along with the difference in recurrence rates between lumpectomy and masectomy (and all my studies show that's a 10% difference),and the fact that I'd be way small chested - then I could still opt for mastectomy and DIEP at the end after fully recovered (and then it could be immediate reconstruction instead of delayed with expanders). Now, what I've learned is that my BS also managed to get that other lesion AND it did show as benign in the pathology report. So, one thing off my concern list. I am much smaller than I'd like to be - and the PS did not have enough breast tissue for where my nodes were taken to fix that area, so that still is something I need to look into later - but it can be later - and I just haven't decided about that recurrence rate. The 11 positive nodes now that I realize that they themselves really, really mean a chance of recurrence and truly lower survival rates - well, that other 10% by having a mastectomy - that might not be anything to sneeze at (though I do need to see how much of that 10% relates to Stage IV survivors too; statistics can be misleading).
Well, that's my story so far (sorry for the book). Chapter two begins with my 2nd meet with the MO this coming Wednesday. I've been very busy reading and learning. Have many questions and many, many fears. Thanks for listening (and info about cording MLP3). And, thanks for sharing your experiences and things you've all learned.
My magnolia is budding - no blooms yet. No buds on dogwood yet. Looking forward to apple and cherry blossoms. Love Spring!! It's so hopeful. Prayers for all!!
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Moondust, I do not get any local anesthesia for the debridement. The entire area is numb and I can't feel a thing as she goes at it with her pointy instruments. I guess that's one advantage to tissue death--once it's dead, it's REALLY dead. I doubt the nerve endings will regenerate. But I am so pleased with how much better it looks. The average non-medical person would probably still be icked out by it, but as a health professional myself, I can tell you this is nothing short of miraculous.
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Pinki, I am very sorry about the stage lllC. It sounds like you are doing everything you can to learn your options and that your MO is taking good care of you. I don't blame you wanting the expanders in for over a year! I have had my one for 6 months now and still need to wait until at least June or July.
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Hi all.It's a little difficult trying to keep up with all of you!
I'm doing well. I still haven't seen my MO so I don't have an official diagnosis. All I know is that the cancer is gone (yippee!) and the drains are out. I really hated those things! My girls are looking pretty good even with all of the cuts and scars.
The only thing that I wanted to say was to trust your intuition. If it doesn't feel right then explore other options. I upgraded my insurance policy 4 days before being diagnosed with BC. And CLL (chronic lymphocytic leukemia). That's crazy. But I've been lucky/unlucky enough to be diagnosed with 3 potentially fatally chronic diseases in 7 months. Diabetes, BC, and CLL. What else could go wrong? hahaaa
I never knew that this would be so complicated. It's a full time job. I'm so glad to have all of you to learn from and to empathize with. Here's to good news and better health on the horizon.
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thanks for all the feedback everybody,
poodles I am so glad that you are really starting to heal now!
Neither my surgeon nor my oncologist brought up mx unless I did. They both said that unless my genetic testing came back positive, it would not change my outcome at all and they did not recommend it. I was tested in 2010 tested recently, any of the genetic mutations that my background (Ashkenazi Jew, no family history of breast cancer or related cancers) would put me at risk for were negative. Actually they did not even recommend it if the genetic testing did come back positive, because then I would get such early screening that it would likely be caught before I would need any treatment except mx, so I can wait until then. A set of the testing came back positive I would want to look at removing my ovaries, there is no early screening for that as there is for breast. Usually I feel good about my decision to not even try to push for an Mx but in some of the groups and bulletin board time and it seems everybody has had one, so it's hard not to question a little.
Article was posted on bethink breast cancer yesterday, saying that study showed that it did not actually reduce anxiety. I will look for it and post it here. It was quite interesting, and reassuring
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very interesting article. My surgeon recommended lumpectomy saying it was no different survival rate. I start my third AC chemo on Friday. I'm 50% done and then onto weekly Taxol. The first 5 days are rough but I have only been sick once.i love this forum
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Hi Everyone - very interesting article. I have no issue with trying BCS first. However, until they can improve diagnostic tools, this trend may continue. The anxiety may be coming from the incidents where mammograms and MRI are not catching the cancers, and/or underestimating the size of the tumors. My 2014 mammogram did not catch the BC, neither did the 2015 mammogram (post my finding the lump), nor the post biopsy, pre-operative MRI. After 3 lx to clear margins, I must now have a MX. And now they are saying I may have to have rads after mx, because I'm in the grey area. I am in Canada, and they are very reluctant to remove my good breast. Am I anxious? You betcha. How are they going to monitor the good breast if the diagnostic tools don't work? I figure the only chance I have of finding out if the "good" breast is really ok, is the path report after the reduction. Other than that, I have to rely on myself finding anything. If I had to do this over from day one dx knowing what I know now, I would have had a bmx. I would have laid on the BS's floor and had a royal 2 year old tantrum. I may still go there, just for stress relief
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Pinki, does the "DC" in your name mean you live in DC? If so, maybe we could get together, or at least share resources. I'm in Chevy Chase.0
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Interestingly, the same reason given most often today (after “peace of mind”) by younger women for justifying bmx was given at the dawn of the lx+rads era is sociopolitical: control over one’s body. When Dr. Susan Love first came out with studies that lumpectomy for small early stage tumors was as effective as mastectomy, women began demanding lx, rebelling against the paternalistic and condescending attitude of many male surgeons who advocated excisional biopsy followed by immediate mastectomy if the frozen section came back malignant. But in recent years, more women (especially younger ones) are saying that they are choosing bmx as a declaration that they are not defined by their breasts. Interesting how what is considered the more “feminist” choice in bc surgery has flipped 180 degrees over just the past 25 years.
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Stellamaris, due to my genetic mutation my MO recommend removing my good breast. I have a friend in Canada who has ILC like you. It is generally recommended with ILC to do BMX due to ILC being difficult to detect. She told me in Canada they don't like to do BMX.
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iammags, I am sorry about the CLL diagnosis.
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I'm in Canada and nearly all the women I've met in local groups, etc had BMX regardless of the diagnosis or genetics. Maybe it depends what hospital?
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Hello All! I've surfaced. I'm far behind and so many people coping with diagnoses that are confusing, not clear cut or are far too clear cut. You have to wonder why things are so difficult with BC and that if you have this type, you get this treatment, that type, that treatment. No guessing. But we aren't there yet. So we do what feels right for us and that we are comfortable with.
Molly, that magnolia is in my present home. Good news! I just bought a house in Spokane!!! Have to pass inspection and title clearance but those shouldn't be much of an issue since the home was built in 2009. I'm so excited, scared, sad, and happy. A huge step. Now to sell my home (but not too fast since I don't want to move until June). I'll be 6 minutes from my youngest son ( vs 6-1/2 to 8-1/2 hours now). And at least in the same time zone and #1 son. Works for me!! No magnolia tree. No trees at all which I don't mind at all. Small yard. ONE FLOOR. No basement. Room for any BCO'er who wants to come visit the Lilac City!
Thank you for all the support ladies. It is very much appreciated!
HUGS!
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Peggy, congrats on the new home--having it be new enough to not need a lot of repairs and it being so easily physically accessible is icing on the cake of being so close to your sons. Not to mention being in a drier climate so you don’t get that blasted lake effect snow from winds coming off Lakes Erie & Huron. Easier on your joints, too.
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WooHoo Peggy!! How exciting! I have Spokane on my 'drive around the country when I finally retire tour' (whenever that happens....),and look forward to seeing it someday before too long!
Octogirl
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Peggy, congratulations! A new house is exhausting and also exciting
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Bluedog - Sorry, my DC is just part of "IDC" diagnosis (just lowercased the "i"). Seems like you are almost all the way through (not too sure how long the targeted therapy process takes), so not too sure how many resources I have that would be helpful at your stage. However, I'd be happy to share titles of books I've read/am reading. Wishing you well!!
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Wow, I was on the road today on a day trip to Charleston, SC to see our youngest DS and to look at some possibilities for our little retirement land outside of Charleston. So much going on with you gals. Sending lots of positive energy and hugs to each of you!
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Congratulations Peggy!!
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Yay, Peggy- sounds like a great house near your boys...wonderful! Know it will probably be hard to leaaaave the house you shared with DH and family for so many years- am thinking of you!!
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Congrats Peggy
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Yeah Peggy, welcome to PNW!
And I have other good news to share! DH had his transesophageal echocardiogram (try saying that 3 times fast!) and it appears his mitral valve will be left alone. The thought was his blood pressure was causing the valve to leak more and now that that's under control no open heart surgery is necessary. We're doing the happy dance now and maybe life can get to a new normal.
Thanks everyone for all the good thoughts and prayers!
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Yay, ORknitter, for the no-open-heart surgery! Whew!
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ChiSandy, Definitely no lake effect snow but still snowy. Spokane is also not as humid as Chicago and Detroit.
Octogirl, (and everyone else), the welcome mat is out for you!
ItalyChick, Molly, Ayr1016, Thank you all for your good wishes!
HappyHammer, thanks. It will be hard to leave the family home but exciting to start a new life!
ORKnitter, WooHoo for DH escape open heart surgery. What a huge relief! And thank you for the welcome!
HUGS!
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ayr, I'll say it with you: do not let a client get you stressed!
MLP, hope that you are feeling better and are out of that danged AC fog today.
blamoms, hooray for halfway!
PiNKi, sending good thoughts for your MO appointment tomorrow.
LTF, thanks for sharing the Washington Post article. Interesting that many who opt for BMX with motivation of achieving peace of mind actually don't.
Peggy! Congrats on finding your new home!! Fingers crossed that the inspection goes without a hitch.
ORknitter, great news!
iammags, you are right. This is a full time job. And I think I you are due a raise.
HH, I love, love, LOVE Charleston. I've only visited twice, though have never felt so at home at a place that I'd not visited before. It's at the top of our "when we win the lottery and buy houses in places we love" list. I could be really happy eating shrimp and grits every day.
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Peggy, congratulations on your new house! It sounds like the perfect retirement situation. I am envious!
ORknitter--so happy to hear that your DH won't be needing mitral valve surgery after all! I know you must feel like y'all dodged a bullet. Open heart surgery isn't for the faint of heart, that's for sure.
So, did anyone celebrate Pi Day yesterday (3/14)? I made my grandmother's coconut custard pie. The recipe has to be over 100yrs old, and she probably got the recipe from her own mother. Usually I make coconut pie for Thanksgiving and Christmas, but I just haven't had the gumption to get up and make it this year, until now. I didn't have any frozen pie crusts and I don't know how to make a pie crust (well, I do, but the last time I tried we nearly had to get a band saw to cut it), so I just poured the coconut custard into a 9" greased up pie plate. It turned out great! And I probably cut out about 150cals per slice!
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Stella- what about ultrasound? My mammograms never picked this up. Including the diagnostic one! And they wanted to send me home and schedule another one for 6 months out... My tumor tripled in size in one month... Can you imagine where I would be if I didn't demand the ultrasound that my gyn ordered...?
Peggy- congrats!!!🎉
Chisandy- interesting perspective on the flip in thoughts about bmx.
Pink- you may have cording as it can go down your arm. It's tissue that forms after SNB and they really don't know why. But it's painful and limits motion. I kinda pushed mine and it snapped. Literally.
Blamoms- half way there my friend!!
Moondust- I think I remember my mo saying whole breast due to the LVI. And the gardening thing during chemo is what has me bummed out. Flowers can carry all sorts of bacteria and mold spores that can get into our lungs. That's why flowers as gifts during chemo is a no-no:( The one thing that really cheers me up and brightens my home...😥
Orknitter- congrats on dh!
Peachy- LOVE your new picture! Is that a wig?
Feeling much better thank you everyone! But tired the day after any activity or Kate night tv... This election circus has peaked my interest in corrupt politics;)
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Peachy- Love your new avatar! So pretty! So...maybe we need to plan a BCO'ers trip to Charleston. We could rent a big house at the beach and go into the city for different fun. Fall is wonderful there as it isn't too hot, crowds are smaller, and rates are down. Something to think about!
ORKnitter- SO happy that your DH can avert surgery. Yes, on to the "new normal".
Jill, MLP- how are you doing? Who else is also getting chemo right now? I'm so sorry but cannot think- please update when you can.
It is a gorgeous day here- no humidity, bright sunshine and about 75 degrees. Headed out to ride the bike. Hope you all have a great day!
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