Mastectomy Sept 2011
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rk - <snicker>!!!! Thanks for the laugh!
Great news groovy girls!
I've been busy all day - see next post - so can't catch up on previous posts so hope all of you are managing ok today!
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I had a ROUGH day. My appt with my docs here was cancelled last minute (as in, I was DRIVING to the appt) b/c the doc got called in for an emergency surgery. They can't see me until NEXT Thursday now - OMG! HOWEVER, I convinced them to let me have a copy of the path report. The local path and Miami path DID agree that I had no invasive cancer and that my nodes are all clear (so the big scary stuff is still ok), but get this:
1) local path found a small bit of DCIS in my R "good" prophylatic breast - Miami said it was all benign! The margin was only 2 mm. Wow. Will likely need skin excision.:((((
2) local path said L retroareolar tissue is DCIS, NOT just atypical cells like Miami said. Wow. Will likely need to be excised:(((((((
3) L posterior margin is less than 2 mm. How to proceed is still up in the air. I was able to fax local path report to Miami BS and talked with him; he does not think I need radiation b/c he took the fascia overlying the muscle, and DCIS by definition does not leave the ducts. However, there is a study that shows after MX for DCIS if margins are < 2 mm, if you are Grade 3, under 60, and or have comedonecrosis (I have 2 of these 3 factors), you have a 16% higher chance of recurrence. I faxed my Miami BS this study (the abstract); he said he wants to get the actual study to see if they took fascias in these patients - he also said he will meet with his radiation oncologist to review my case and this study and get his opinion. I have to say, my Miami BS was quite open minded in looking into this (and he also called me RIGHT back this afternoon as soon as I called and faxed him the path). I'm still very impressed with him...just not the pathologist. He said he wants to get the slides back and sit down and go over them with the Miami pathologist to see if he agrees with the DCIS dx (#1 and #2 above). He said if it is DCIS, he would recommend excision for both #1 and #2 - so - either way, I'm sure i'll have it done, since I trust the local pathologist the most. (My local doctors are with a national cancer center.)
So this leaves me with waiting until NEXT Thursday to discuss with local BS and RO and plan the next phase in treatment. And all reconstruction put on hold until this is all figured out. I'm exhausted and sad, but so glad I had the 2nd opinion done on the path. I'd much rather be going through all of this now than having a recurrence down the line.
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Great news groovy girls, IIB and no chemo!
Dancetrance, one of the worst aspects of this bc journey is that everything seems like a moving target with large doses of waiting thrown in to make us feel even more frustrated and powerless. Hope you get some clarity soon.
As for me, since last weeks surgery, I've had a snap, crackle, pop sound in my throat when I inhale and it feels a bit irritated. My onc thought it was irritation from the breathing tube but sent me to an ENT doc today. He numbed my nasal passages and throat and sent a small camera into my throat via my left nostril. Really! He couldn't see anything but also couldn't figure out the Rice Krispy sounds. Says if it doesn't go away in a week then I need a CT scan. Hmmm, medical mystery. Also saw an oncology psychiatrist who suggested I start taking Effexor. More good living through chemistry.
Olga, my pom is a red sable so she has lots of black tips . She also has a shorter teddy bear face and loves to smile for photos. I think she has an enormous ego. My other dog was a flea covered , pregnant stray who has some anxiety issues but seems so grateful to have a loving, stable home and regular meals. Sleep well my friends.
Caryn0 -
Wow Groovy - great news! I confess to not really understanding this oncotype stuff - totally new since my BC and so it seems unreal that you can be stage IIb and not get chemo - but hallelujah, b/c if chemo's not going to do anything for you, then why go thru the hassle?
Lorraine - while I'm glad none of there were no huge surprises on your path, it completely sucks to have to wait 'til next week. ARGH. Good for you for pushing for the path and wow - your Miami doc is dreamy for being so responsive. Biting nails for you right now w/those margins . . . they are tight. You are right to wait on your recon. 'til ducks are in a row on this one. Like Caryn said, the freakin' moving target is so tough to take. Hugs to you tonight. Hang in there.
Caryn - ?? keep us posted on your snap, crackle, popping - this is a new one. I hope it clears up as spontaneously as it started. Great that you saw a psych - no one should be a hero during this stuff, it's heavy. A little help might make your life so much more bearable for the next few months while you muddle thru this next stage. I hope the Effexor helps - BTW, it's often given to women who have hot flash issues on Tamoxifen - I can't remember your plan, but it could be a NICE side effect for a change.
Well, I didn't drive today b/c one of my best buddies took me for my face waxing. : ( I was excited for the companionship and kindness, but I will confess to you guys that I was a little bummed out. Maybe tomorrow I'll take a little ride to CVS or something - I know, living LARGE! I did fire up my heart for 20 minutes - did about double my usual distance b/c I was going "so fast!" Felt awesome to get the blood pumping and I really had to talk sternly to myself to stop before I did too much. I'm going to increase by 5 min. daily and see how it goes. I sent away for 2 zip-up jog bras last night and they're on their way. I hope the weather is cool going forward b/c I have no workout tanks/t-shirts that I can step into and I have 3 weeks of this B.S. left.
I need to go wind down - I think I'm on a high from feeling better and I still do need sleep.
I hope you all get some rest tonight.
xo
Sarah
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Groovy girls, ha
ppy for you! As far as I know, if anybody has HER2 , like me , stage 1a, they even don't check onco type, chemo must be without question, because HER2 is very aggressive.
Dance trance... Take a deep breath and try not to think about anything till next Thur...I know, how it is.Everything works out for you just fine...
Caryn , sorry...I know everything really cold, or really hot makes it , throat, worse. I usuallu drink warm tea with honey and some lemon juice, it helps.I am already in love with your POM
And I love them smiling...Scotty is upset why I don't let him kiss me. The instruction on chemo said: NO DOG'S SALIVA! UUHHH
Sarah, you are example for me , whoa!
have a great day, everyone!
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Thanks everyone for your encouragement! I'm doing ok, hanging in there as always.
Caryn - those strange sounds in your throat are, well, strange! I bet that was not too pleasant having a camera put up your nose and down your throat! Hope this gets better soon and they get to the bottom of this medical mystery.
Sarah - YAY for getting the heart rate up and feeling some zing! I know you loved it - really does so much for the spirits to feel yourself getting back on track to your old self. Good for you for the self-control...I can really relate on that one!
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Groovy girl. Great news on the path. No Chemo is big
Sarah. Congrats on getting to take a heart pumping walk.
I have to tell you all I am really bummed this morning. I am 7 1/2 weeks post Chemo and this morning while brushing my teeth I noticed that 2/3 of left eyebrow and 1/2 of my right eyebrow are gone. They were there last night when I washed my face. I know it will grow back, but geez this sucks.0 -
Good morning friends.
Groovy girls - Congrats on No chemo and such a low Oncotype score. I know that has to be a huge relief. I'm still waiting for my Oncotype score.
Caryn - Oh my goodness! Hopefully it is simply cartiledge and clears up soon. The camera down the nose? Wow.....
Dancetrancer - Hang in there! I know the waiting sucks so try to distract yourself with some fun like girls' lunches or something. And vent away if you need us.
Sarah - I bet you feel great with each step. So glad you can start getting some heart pumping exercise which will make you feel worlds closer to your old self.
Olgah - WIll try to post a picture of the pups soon. No dog saliva, huh? l would miss my puppy kisses and go nowhere without a few dog hairs... ha ha Hope chemo passes quickly so Scotty can shower you with kisses. Glad you have the unconditional love and antics of a dog to help bring a smile to you during your recovery.
Off to lunch with a girlfriend before my afternoon walk. Hope everyone has a great day!
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Oh Margie - I had the same thing happen. Was so fired up that I had my eyebrows and eyelashes and then they fell out much later. It sucks! I had gotten some eyebrown powder and a special brush pre-chemo 'cause I'd been warned about thinning/losing and that looked quite natural (as opposed to pencil). Mine was Trish McEvoy (still have it, actually!) but you can get them at the drugstore, too.
Odie - where ARE you that it's lunchtime already? Oh maybe you don't want to disclose. Laughing b/c I was just rooting around the kitchen for a yogurt, etc. b/c I didn't eat much breakfast and thinking: really, I'm ready for lunch!!
Sarah
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Margie, I understand your frustration. I always loved my eye brows, gift from my daddy...But think YOU ARE OVER WITH CHEMO!!!! No mo worrys about all that stuff! This is the most important thing- you are gettin out of it!
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Margie - What a bummer on the eyebrows but as the girls say, they will grow back and hang in there as you are almost there.... HUGS
Sarah - HA HA!!! I am in Virginia but since I will also stop by my office for a quick visit after lunch and everything takes me longer these days, it takes me an hour or two to shower, dress, feed & corral the pups and get myself ready to leave the house for a high noon lunch....Hilarious/pathetic, sad but true.....lol
Happy Friday all! ...
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Good morning everyone,
Nurse just left after giving me my neulesta shot. Considering its day 2 after my first treatment I feel pretty good. Today's last day for steroids though.
Just learned he other day how to draw the eyebrows on. I'm going to look for that powder that Sarah has mentioned.
Groovygirls- so glad for your good news. It must be such a relief to you!
Odie- fingers are crossed for you that you will get the same news " no chemo"
Dancetrainer- hopeing that this week goes by quickly for you. It seems like all we do is wait...0 -
Diana, did they tell you about Claritin with Neulasta?
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Olgah- I have some to take. If I start getting any muscle pain I'm going to take one. Do you get any pain from the shot and if you did, when did it start?
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OK, Odie, now I'm straight. I was trying to think if you'd ever given any indication that you were in Europe, but even that'd be a late lunch ~3 p.m. (my sister lives in Madrid so we're always at different points in our day when we email/talk). But NOW I understand. I spent most of this time away from the computer showering, dressing and drying my hair - yes, I figured out how to do a blowout w/t-rex arms . . . possibly my greatest acheivement of the last 4 weeks!!!
Have fun at lunch - I'm going out w/a girlfriend, too - first lunch out since "the knife."
Sarah
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Margie - so sorry to hear about the eye brows - that must have been quite a shock! Hang in there on this roller coaster ride...hugs!
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Diana, I had to take Claritin night before the shot ( Monday was chemo, Tuesday was shot),then through Sunday, because my breast reacted to Decadron and was red and swollen. Usually Claritin is been taking couple of days. However, my little pains started on Thursday and were till sunday. I took Aleve may be 2 times only. My biggest problem with Claritin was fatique and dizziness, which is extremely rare. My pains were not bad at all, period used to be much worse. They gave me Neulasta only because I had infection in my incision after first chemo,not because of low bllod cells in the middle between 2 chemo, they thought body can take care of it itself . Some people never get Neulasta at all.
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Sarah - Hope you had a wonderful lunch out as I did....Stopped by my office where my co-workers were genuinely happy to see me. Everyone kept telling me how I look really good so I guess the time spent primping was worth it.... tee hee...
Will see the oncologist Monday for my Oncotype scores to make the final determination on to chemo or not to chemo?... If all goes well, the result was low and we stick with the original plan... Fingers crossed.......
Had a great day and wish all a restful evening
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Odie - I did, thank you! Another one of our friends was there - great to talk about a recent trip of hers . . . hardly any BC talk, which was so refreshing. Glad you had fun, too and that the primping was worth your while.
I find I want to look nice when I go out b/c I've spent so long in clothes that can go from street to bed in an instant . . . yoga-wear for non-yoga purposes - usually a pet peeve of mine!So yesterday I took a kick-ass power walk - 2 15-minute miles. Felt incredible, but today I'm more swollen on both sides. PS warned me that this might happen if I overdid it. Guess I did. Will walk a little today just to move things, but keeping it slow and shorter. Hopefully this'll subside quickly so I can get back at it again soon. For those of you exercising - have you noticed this issue? How long does it typically take to go down? This isn't huge swelling - just more reminiscent of what I had a few weeks ago. Took some Advil.
Hope you all got a little quality rest last night,
Sarah
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Sarah - I get mild increased swelling still after I exercise (IMO, I think it happens regardless of whether you "overdo it" or not). It usually seems better by the next morning - I've always found my swelling improves after a night of rest, but if I remember right, I think that is opposite of what you have found...?
Odie - fingers crossed for you!
Dia - glad to hear you are feeling well so far.
I'm doing well. Decided to drive to where DH has been working out of town since last Sunday. It was only about 1.5 hours. The seat belt still bothered me a bit, but I put a little pillow in there to hold it out some and that did the trick. DH is up and off to work already so I'm hanging out in the hotel. This is just a boring old hotel, no fitness center, etc...looking forward to moving to the nice one tonight with the jacuzzi in the room - a little bit of pampering will be divine!
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Good morning ladies.
Sarah - That was my exact thinking and the fact that I refuse to go in to the office looking like the sick person people expect....Trying to wean myself off sweat pants and start dressing normal every day now since I am out walking daily but still don't fool with makeup & hair too much yet unless I have to go into "public".... hee hee Glad you had a nice time as sometimes we need those days where it is all about someone or something else other than cancer...
I have been walking a 3.5 mile walk daily in about 45 minutes which is not a fast pace but I don't want to overdo. Have not had issues with swelling but notice my one drain spot will throb if I get my heart rate up too much... Think that one drain must have been against the muscle which is why it bothered me so much.
dia123 - Glad to see you are getting thru chemo and not feeling bad... You go girl! So happy to hear you are doing well..
Happy Saturday all....
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Dancetrancer - just saw your post. Here's to you and DH having a wonderful weekend away. Enjoy some pampering!!!!
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Lorraine - pamper yourself! A change of venue is probably nice, in and of itself . . . enjoy the time away. My swelling isn't too bad, just more - usually it does get worse at night and then is much better in the a.m. - today not so much. Odie - maybe I'll try the same distance, but slower. 15 minute miles must be too ambitious for someone who's primarily been lying down for the past 5 weeks!!
In other news, I just spent a while on thank-you notes for food and gifts. Have written 15 and am only up to the day I came home from the hospital . . . yikes. I'm so lucky, I'm not complaining. My handwriting is awful, though (they teach you that in law school) and my hand is cramped up. More later I guess.
Sarah
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Sarah- I had some truncal edema when I returned to exercising. I now where an under amour compression top under my shirt and over my sports bra. I wear a moving comfort bra with the zipper in the front. My kids have to help me peel off the compression top when I am done exercising. Something they love to do since it is all sweaty!
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Dancetrancer - that sounds lovely any get-away is a good getaway.
Sarah - I have had continued edema under my right arm from exercising - the PT is trying to get it down. Just take it slow. Don't over do.
Obviously my PT is not concerned for me since she added bicep and tricep curls with 3 lb weights on that side to my exercises - WOW. Who would have thought 3 lb would be so exciting!
Left side still gets nothing - but she said it is doing well.
Hope you all enjoy your weekends - relaxing and laughing and healing.
Tina
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Just checking in to wish you all a good weekend.
I had a rough week, started running fever, saw NP, started antibiotics, still felt bad yesterday for my first (and apparenlty only) post-op check. I was supposed to see the BS at 11:30, MO at 12:20, and follow up with the LE specialist. The BS ran late, decided I had seromas that needed to be drained, changed my antibiotics and pain meds. MO was late for a meeting herself, so saw me briefly, overwhelmed me with information and treatment options and said we need to reschedule next week so we have about an hour to talk. Then spent time with a really nice radiologist getting seromas drained, never got to see the LE specialist. But they set me up for PT on Monday, and I hope it is someone who does LE prevention stuff. The BS said "no limitations" so I can drive whenever I am no longer under the influence of pain meds. Last night was the worst I have had since the first week, couldn't sleep, pain every which way I turned. But this morning I don't have a fever, getting through the next 24 hours would be good.
I started Effexor about 6-8 weeks ago for chemotherapy-induced peripheral neuropathy, and have noticed fewer hot flashes as well. I think it is one of those great multi-use drugs that help with depression, neuropathic pain, and hot flashes. I had been tried on several other drugs for the CIPN, and they either didn't work or had bad SEs, and I am so happy to have found something that works, AND reduced hot flashes!!!
Olga, the last time I checked in I think you were missing in action - glad to see you are back, and want to encourage you with the chemo. I was told, and it was true, that each one is cumulative, that you may become more fatigued with each round, and no two rounds seem the same. Prayers for you, my friend, for rest and healing.
Love the dog-lovers here!
Also, I don't remember who posted the question about anyone NOT doing reconstruction, and I can say that I am definitely not doing reconstruction! I didn't have much to start with, you can hardly tell any difference in my appearance, and the multiple procedures required just didn't seem worth it to me right now. The good thing is that this particular decision can be changed at any time in the future if I change my mind.
Thanks to all of you who posted who are doing so well - I am trying to get my fighting spirit back this week, and you are really encouraging and good examples to follow!
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Updates:
Snap, crackle, pop still present but getting a little better (maybe).
Spent a few hours at my school's Walkathon, big fundraising event. It was so good to see students, families and colleagues. I was exhausted afterwards but it was well worth it.
I went to my daughter's 20 week ultrasound yesterday and was thrilled to find out that I will be having a beautiful, healthy, granddaughter. We had a celebratory brunch afterwards and I went home exhausted again but thrilled beyond words. Hope you are all having restful weekends. Tomorrow, I intend to do nothing and am quite looking forward to it! Caryn0 -
Linda - great to hear from you - so sorry your week was so rough though! Here's to the fever leaving and you getting back on your feet. Also happy you're so happy w/Effexor - I know so many women for whom it was a lifesaver . . . truly one of those multitasking drugs. Happy you made a decision on reconstruction - you're right, it's not a "now or never" situation, and the recovery can be tough. Try this on for size and if you're happy, why tinker??
Caryn - Hooray! A granddaughter! I'm sure you're beat but how nice to do some fun things for a change. You can rest tomorrow - your spirits have been lifted and THAT is worth a lot these days. Hope your throat continues to quiet down.
Well, I'm still up at 9:44 b/c DD had a late-night (for 8-year-olds) Halloween party tonight. She's just getting to bed now, which'll mean I'll be tearing my hair out tomorrow and Monday evenings as she hits the wall. Thanks to you guys for your encouragement re the swelling - fingers are crossed that it's better tomorrow. I missed walking today and tomorrow's supposed to be gorgeous.
Hugs to all, and to all a good night!
Sarah
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Sarah - thanks for the reminder to do thank you notes! I sent each person a thank you email, but a hand written note is a great idea. Hope you woke up with less swelling today!
Linda - so sorry to hear about the fever and seromas. Great to hear you have no limitations and can move forward as tolerated. Great news on the Effexor working so well for you! I can understand about not doing recon - I've just had the first stage of mine, and I was small before and wore padded bras, so I am able to wear the same bras now and look the same. With my detours I posted about, my recon will be delayed, but since I look pretty much the same as pre-surgery in clothes it's not a huge deal...except for wanting all of this to be over, LOL.
Caryn - congrats on the baby granddaughter!!!!! What a great positive thing to focus on in your life. Hope you are enjoying your "nothing" day today.
Well I have thoroughly enjoyed our weekend away, even though DH had to work during the days. The jacuzzi was wonderful last night - so relaxing! I slept like a baby afterwards. I think I need to take advantage of my big sunken tub at home...moved in January last year and have NEVER used it once...no bubblies but still! We all need to spoil ourselves a little more, especially now!
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Lorraine - yes, I sent the emails too and even feel like the snail-mail notes aren't enough to express my gratitude for what people have done for us. DH and I are thinking of throwing a big party/open house for everyone after the holidays are over. A chance to see everyone, thank them, and feed THEM for a change. And to celebrate life and good friends, of course! Your weekend sounds awesome - just what the doctor ordered, right?? Hooray! And yes, what're you doing not using that tub if you like a tub? A nice soak in a warm bath can bring that blood pressure right down. Go for it.
Woke up back to normal, swelling-wise this a.m. - yes! So celebrated w/what else? More exercise! I toned down the speed, increased the mileage very slightly. Up to 1.6 miles. Going for 2 by the end of the week - taking it very slowly here so as to try to not trigger another flare up. See my PT tomorrow so she might have good ideas. Curious if biking would do similar things to me but still not comfortable driving to the gym at this point . . . more baby steps.
Hope you all are having a lovely Sunday - it is SIMPLY GORGEOUS here in Boston - crisp, cool, sunny and the leaves are starting to turn down here. Chamber of Commerce weather.
Sarah
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