Any October 2011 Surgeries out there want to wait together?
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Hi All- Altough I have been reading your posts and LMAO most of the time, I have not posted much lately. Not much going on, just waiting for the next steps. the waiting & more waiting is still maddening. TE exchange next week & then onto radiation. You would think that after all we have been through, the waiting would get easier. It dosn't.
My thoughts & prayers are with all of you that are having difficulties.
A big thank you for all your humerous stories which brighten my days more than you know. Wishing y'all a fabulous week as we all get closer to the finish line for our treatments.
Rose
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Hello all my October friends...I've just read gamergirl's blog (a little bit o' cancer) and discovered that she has finished chemo and although she had a rough ride, she is looking forward to coming back to life again... gamergirl, if you ever come in here, well done and wish you a quick and complete recovery..
rachel, was wondering if you are nearing the end of chemo, or actually reached it? I promise, you will get back to feeling normal again
Cookie, we're here with advice and support if you need it, although I hope you don't!iLuv2Knit, happy belated birthday!
Eema, sorry to read about the huge hernia, but better a monster hernia than the monster I refuse to name. I think your blog is hysterical, and you are a really gifted writer and make me laugh and laugh.
Ginger frozen shoulders take a long time to go, but they do go..you just have to be patient. My husband had one and I think it must have taken him at least a year for him to feel any real improvement, and 2 years for it to go altogether. He was persuaded to try a steroid injection, but it was painful and completely useless, made no difference at all... you just have to wait it out unfortunately.
Lovely to 'see' you too, AJ, I'll be sending you a pm so we can become friends on facebook.
Margie, hope your heart issues have been resolved...
TexasRose, good luck for next week!
And to all those I haven't mentioned I really hope you are getting back into the business of living and you can enjoy your life without having to think about the beast too many times a day...
Reaching 50 was fine in my opinion. I found 40 a lot more depressing. By the time I reached the half century I could no longer pretend that I wasn't middle-aged...at 50 you can embrace it (yeah right
) My hair is growing fast now, and I've given up the wig and have grey/silver curls at the front and top of my head, and a darker colour on the back. The strange thing is that I can't look at myself objectively and don't know what I think of the new me...Before bc I had shoulder length blonde and highlighted curls, then I had very short blonde hair, then the boiled egg look, then a short stylish wig of straight red hair, now mostly grey. Friends and family say contradictory things, so I'm just going to wait a while and then maybe go to a really good hairdresser to see whether s/he could give me a stylish short cut for my grey hair..tres cool
Or at least that's the plan, but we all know what happens to plans...Healing thoughts to all of you...and enjoy the spring if it's reached you yet!
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Hi All
I thought I would pop in and let everyone know I have one of my final stages of recon this coming Wed. I am having my nipples done and my PS is going to do lipo and than inject the fat he gets out of my inner thigh and inject it around my implants to give them a more natural look. While I am there he is going to do "smart lipo" on my outer thigh (cellulite). I have worked out all my life and have a fairly good shape, but I have always had that trouble area and my PS has been working with a new technology that is being FDA approved for removal of cellulite. Im more neverous about this procedure then all the other stuff I have been through. I have always hated that part of my legs and my wonderful DH said go for it if I want so we pulled the trigger. I guess Cancer can give me a few things
larger foobs (went from large A to small c) and reduction of celulite I hope everyone is having a good week and wish you all a fun St Patricks day...
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Oh Margie!!! So glad you are truly seeing the light at the end of the tunnel! Get all you can out of that PS of yours! You are going to look and feel great - I am so happy for you !
Happy St. PaTrick's Day all!
I am still playing the waiting game . . . . Will be bugging y'all for thoughts once I know more . . . . Oh! One new MO suggestion this week - goeserlin shots. Anyone ever heard of them? MO suggesting this over tamoxifen as I can then avoid uterine cancer risk . . . . Would love any feedback if you have heard anything . . .
Cheers.
Kelleyod0 -
Margie- will be thinking of you on Wednesday. Great to have the added bonus of less cellulite. Sounds like you have earned it.
Kelley- I never heard of that. Keep us informed
Maria_Malta- nice to hear from you and thanks for the update on Gamergirl. I will check out her blog. I am so thankful she started this thread and brought us all together.0 -
Hello my October Sisters . . .
I finally have an Oncotype score - the magic number is 14. Although I am in the low range, I'm certainly not as far INTO the low range as I'd like to be.
This gives me, I read an average rate of distant recurrence of 9% . . . .
My quantitative single gene report is ER: 9.1 ---- PR: 9.3 ---- and HER2: 8.2/negative . . . .
Not sure what else I should be looking at or gaining from this. Any insight?
I'm open to thoughts, feedback, wisdom from those who have tread before me. Seriously considering a proph hysto for genetic reasons (cancer prevention) vis a vis bc treatment. Seriously considering local radiation --- although rad onc initially talked about doing breast area (remember - breast is gone though), chest wall and axilla . . . MO thinks that is a bit overkill for a 2mm micromet.
If you're perusing tonight - would love some feedback on this - surely appreciate it!
Margie - if my wits are about me - good luck tomorrow!
thanks - Kelleyod
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Kelley - I wish I could offer you advice. I didn't have an oncotype test; chemo was pretty much the set course from the get-go. It sounds like you have some options. If you feel radiation and a hysto will make you feel more at ease, follow your gut. I've got to lose the ovaries at some point, and probably the uterus too because of abnormal paps and possible polyps. Too much to keep track of. Wishing you the best as you make these decisions.
TexasRose - When is/was your exchange? Good luck with that and your recovery.
Maria_Malta - Congrats on the hair growth! I'm sure you'll find a look that's 'you,' whether it's the new or old you. I'm going to have a bit of an identity crisis myself - I've really come to feel this red wig is the 'real' me, and I'm having some issues contemplating the return of my brown hair. I may wind up living out the rest of my life as a redhead, as I often thought about before all this.
Margie - Best of luck tomorrow! It sounds like you're just about done with everything.
I've recovered more or less from tx #5. The thought of #6 on 3/29 is bittersweet - it will be the last one, but #5 really hit so hard that I'm not looking forward to additional cumulative SEs. I guess I'm still moving forward with fewer problems than a lot of women, but even the moderate amount I've had to slow down is hard to deal with. And the first week I really was dragging. The next week should be fairly smooth before I start the roller coaster all over again. And then.... what next? I'm just starting to think about life 'after' cancer. It's defined so much of my life since July that I almost feel.... lost. That sounds so stupid. At least I've managed to keep going to work most of the time, so that will just keep going. A while back I think some of you were talking about good health/eating choices, etc. I have a lot to look at on that front - have to lose weight, want to get back to exercising/fencing. But I'll need to reprioritize my time, and that's always been a hard thing for me.
Sending good thoughts to everyone.
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Kelley- I had oncotype score of 17. Highest # on low end. MO said no chemo. Said the SE would take away any positive value. I had BMX with no rads. Also did ooph due to BRCA2 status. Now taking Femara to add insurance to remove all estrogen.
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Rachel- one more treatment and you will be done with chemo; that is awesome! It will be great to have that behind you. I think it takes a lot of work to get to an "after cancer" mindset. Hard to get there when we are still feeling it's effects.
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Kelly - my oncotype score was also a 14. My ER was 9.7, PR was 8.9 and Her2 was 10.2. I didn't have any micromets though. My Onc didn't even think about suggestiong chemo. The interesting thing to me is that I was originally told that my ER was negative 0%) and looking at the score, I wasn't anywhere close to negative. My PR was very highly positive and that does show on the oncotype, but not as high as I expected given the 90% positive they gave me on the original diagnosis. Tough decisions ahead for you, wishing you peace as you make them.
Rachel - the last one eh?!? Best of luck to you and hopefully you can move forward. It sounds like you have some more surgery in your future, I do too, I wonder when this all ends? I'm ready for a different roller coaster!
HUGS to you all! Take care.
-Judy
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Margie...thinking of you today
Rachel, I found Taxotere totally exhausting and I really felt I could barely drag my legs up the stairs from day 3 to about day 7, (with every chemo recovery took longer), and only now do I realise that even during week 3 I got easily tired and walking uphill for example was a major effort...but your last one will come and go, then you can focus on recovery. Regarding my hair, the funny thing is that although I know red suits me I now can't bear the thought of dying my new hair(s) red, I think it's because I associate the colour with bc and chemo...I'm just not interested in that colour any more. Waiting for now, but I think what I'll end up doing is putting in 2 or 3 different light highlights...blonde, sand coloured and light brown for example, to blend in with my grey/silver.
Kelley, I wish I could help you. but I really don't understand anything about markers and onco scores as oncologists here don't give them much importance...whether rightly or wrongly. However, I was wondering why you're thinking about having a proph hyst... have you tested for BRCA 1 and 2? Regarding radiation...ultimately I think I'd go with my onc's opinion... sorry couldn't be of more help! Good luck whatever you decide to go for and let us know.
Bye for now and best wishes to all of you out there!
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Hi Everyone....!
just checking in and I see I am missing alot of important updates again.Rachel!!!! YAY you are almost done with chemo! At least you can take a breather. whew!! allow yourself some time to just relax and enjoy some of what Spring offers. You had a rough winter, girl! I think we will all be dieting or watching our diets carefully after our diagnosis but I still slip and eat junk food too. I think moderation is the key with eating processed foods and go crazy eating veggies and fruits and multigrains. I want to bike and walk as soon as I am healed up.
I go in on the 28th for my TE exchange. I can't believe it is FINALLY here! I cant wait to have nice SOFT foobs!!!!!! oh, to be able to sleep on my stomach again without a rock being in the way. I know I have quite a lot of scar tissue, as I can feel it and my Physical Therapist has worked on it quiet alot. I am worried about the actual surgery though.... I am concerned with bleeding. I tend to bleed profusely during surgeries and hope this time when I wake up, I won't hear, "You have lost a lot of blood, we may be needing to do a transfusion". UGH....I am scared. I am hoping for a pain free and easy recovery so I can get back to work and start exercising too.
KelleyOD....why are you considering a hyst?? Did the doc recommend it? I was looking at your status and it doesn't look like it was that 'bad' of a diagnosis. I don't mean to make it sound all 'poo poo' because as we ALL know, a cancer diagnosis SUCKS...but I mean your stage was not very aggressive, right?? I guess it is your call to have done what you feel is best. Only you know what you can live with. Good luck!!!!
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rachelvk- I had my TE exchange surgery yesterday, on the 20th- Glad to gget rid of those cumbersome tissue expanders! A little sore but other than that recovering nicely.
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Hey sisters. . .
Dropping in from the beach - had a friend offer my family her beachfront condo this week which is our kids' spring break! What's a gift eh?
Thank you all so much for your input and opinions. . . . I am in a much different place then I was after first cancer discovery (October surgery). . . .
Hysterectomy is to combat my PTEN tumor suppressor gene mutation. With this mutation (my version is called Cowdens syndrome) I have a 28% chance of uterine cancer . . . . Add tamoxifen to that and the gym onc at Cleveland clinic said, "You are adding fuel to a rocket that has already taken off. . . ". Next step there is to eliminate risk with proph hyst. . . .then they will push me into an AI....
I heard from 2 MOs today and my BS. . . . I have learned that's I hate being in the gray area. . . Hahaha.
My diagnosis was / is truly not that bad - just a big surprise and this was never indicated on any imaging I did prior to as surgery #1. . . . And what I perceive to be the big question mark is the micromet in the sentinel lymph node. . . . . Throws every test off just a bit as it makes me (at least in my cancer center's eyes) - node positive . . .
Aarrrggghhh. . .
I am hearing Points of view from the medical types and hoping for clarity and peace. . . . . Andy other pieces of insight? I am open to them. . . .
Thank you all - again. . . Really.
Kelleyod0 -
TexasRose - Yay! So glad the surgery went well. I hope everything's settling in just fine.
Iluv2knit - I'll be thinking of you on the 28th! I also can't wait to sleep on my stomach normally again. I've done it a few times, but I'm always so afraid they'll burst, and of course they're just not comfortable. I should try to find a way to enjoy Spring. Even though BC has forced me to pull back on some activities and work, I've managed to keep doing a lot. Now as I contemplate 'recovery mode,' I'm afraid I'll quickly jump right back into the rat race without taking time to relax and re-examine my priorities. If there ever was a time that I had an excuse to say, sorry, I can't do this anymore, this is it!
Kelleyod - I'm sorry you're in such a gray area. I hope you're able to find a plan that brings you at least some peace of mind. Enjoy the beach time!
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oh Kelleyod!! I must have missed that sentinel node and Cowden Syndrome post. I say 100% hell YA...get the hystectomy. I had one in 2006 and gotta say it was probably the best thing ever. You will have peace of mind to lessen the cancer recurrence rate and THAT, my dear is priceless!! I am so happy I do not ever have to think about ovarian cancer (the silent killer) or uterine cancer OR cervical cancer. viola' wiped out with a single scalpel in the blink of a surgery. Three cancer chances gone. THREE!
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iluv2knit - Good luck with your surgery! Saw your FB post and thought I'd send you extra thoughts here as well.
I saw my PS yesterday and all is well. My exchange is May 31. Yay! A date to mark on the calendar! And my last chemo treatment is Thursday. My BF wants to take me and my mom out for dinner afterwards (as long as I'm not too zonked from the Benadryl). I'm thinking of going to the Irish pub where we all ate the night before my surgery. Sort of makes for nice closure. Then the final chemo roller coaster can start....
Hope everyone is doing well.
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Rachel, HOORAY for the last chemo - what releif it must be to have it so near. That dinner sounds great too.
Everyone - I'm learning every day how much to appreciate you all. I'm having another surgery in about a week (April 5) and tried to start an April surgery group. The April MX group is going strong, but only one person has joined me in the general surgery one. Maybe it's too early for most of them, I don't know? It's not a biggie, I have support from so many directions, but it would have been nice to have some surgery buddies. I still can't believe that after 4 surgeries I'm still nervous about another one. And this one should be easy too - reduction to the reconstructed breast (PS left it big in case I needed radiation) and revision of my abdominal scar (2 small dog ears to fix). When I tell people now, I refer to the upcoming surgeries as the Humpty Dumpty phase, as in putting me back together again. It's interesting, I get a mix of reactions - some wonder if there's more cancer and others don't get why I'm doing this because in clothes I look perfectly normal - out of clothes, perky and droopy would beg to differ.
Apparently I needed to vent a bit today. Thanks for reading, ladies!
Take care all.
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Cookiemonster - We're here for you. Good luck with your surgery! Humpty Dumpty.... I love it!
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Yay rachel on being nearly done with chemo and getting an exchange date!
Cookie- we will be your surgery sisters for as long as you need us.
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Rachel - you wild superstar! 24 hours from now you will be checking off chemo as DONE!!!!!! You inspire me as always. . .
Cookie - You just breathe deep and come chat with us. . . My dog ears and I would love to listen... Hopefully they will be full fledged nipples one day. . . . Not sure how my schedule goes untl treatment plan is finalized. I totally understand the nerves. . . Just scheduled a colonoscopy (one of my funky genetic mutation cancers. Have to watch for...) and I am Terrified..... Told the old DH this and he just said, "really? After 9.5 hours for your tram flap reconstruction you are worried about a colonoscopy?". The nerves are there..... ". But we Are here too!
Luv2knit - three baby! You had me at three risks eliminated..... Thanks! Needed to hear that!
I want to connect with y'all on Facebook - who is on?
Keep on keeping on my October crew.....
Kelleyod0 -
Kelleyod- I am on facebook. PM me and tell me how to find you.
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Rachel - yea to be done with chemo
Sue (luv to knit) - I hope your exchange was easy and you are feeling better.
Sorry I have been AWAL. I had my nipple recon/fat grafting/lipo Mar 21 and then Mar 26 my dad was put in ICU and we took off to Richmond to see him and meet with the family to talk and finally put him in hospice.
Hope everyone is feel good and has a good week...
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Margie - Sorry to hear about your Dad. Sending warm and comforting thoughts to your family.
My last treatment day was horrendous - I knew it would be a long day because it was an afternoon appointment, but there's a big difference between 2 pm and 4:30 pm and counting.... I got all emotional because here it was supposed to be my last, almost a 'celebration,' etc, and I'm still waiting at 4:30 ordering out for (lousy) Chinese delivery for lunch.... then I had a rx to the Taxotere - some back pain, but my mom said my face told a pretty scary picture. They reacted really well, stopped it, threw more meds at me before starting up again. I didn't leave until 8:15 pm - literally the last one out. Now I've made it through the weekend okay, though yesterday was tough. The next few days will be a slog, but I'm getting there...
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Hang in there Rachel - you're 99% of the way there!
Joan
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Margie - sorry to hear about your dad. I hope you're happy with the recon results.
Rachel - SOOOOO CLOSE!! Hang in there.
I'm having Stage II on Thursday. Even after all these surgeries, I'm still nervous. I think the thing I'm most nervous about though, is that the PS won't reduce the foob as much as I want. I truly want a c cup and I'm still not 100% confident that that's what I'll end up with. No matter what it'll be smaller than I am now. I'm probably stressing more than I need to, but that's what I do.
I'm out of town with my son until Wednesday when we drive home. Spending time away with friends should be good.
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Margie- I am sorry to hear about your dad. I went through that with mine and it was tough!
Rachel- It stinks to have the last one be so bad but you are almost there so...hang on! Hope tomorrow is better!!!
Cookie- You will always be my surgery sister so I will be there with you in spirit. I think/hope I am done with surgeries so that is the best I have to offer. Will be thinking of you on Thursday.
iLUV2knit- hope you are healing well from surgery. Let us know how you are doing.
Thursday is my one year anniversary of being diagnosed with cancer...what a strange trip this has been. At times, I feel like it has been a really long year and at others I cannot believe it has already been a whole year. I am waiting to hear from a rheumatologist; we are trying to get to the bottom of this inflammation...
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Hello ladies! I haven't posted in quite some time. Trying to catchup with how everyone is doing!
I finished chemo 2/23 and after much debate they decided no rads for me. We will continue to monitor a intramammary lymph node that was slightly enlarged post-mastectomy. Praying it was only reactive!! I will be having my exchange surgery 4/25. Nervous, excited and ready for it to be done with!!! 0 -
Kim 137- It is so good to hear from you.Thanks for checking in. Glad you are done with chemo and getting close to exchange. You have been through enough!
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Hello sisters!
Sitting it the cancer Center cafe, eating lunch. Felt a bit alone and thought, "where are my girls??!! I am not alone!". Hoping this Tuesday finds you all smiling, at least a little. . .
Rachel - hang in there! You are sooooo close . . . And a true inspiration . . . I am praying you are better today then Monday!
Cookie - will be sending positive thoughts your way on Thursday . . . I am learning plastics / reconstruction is an art . . . An iterative process. Keep the faith.... You are going to look great.
Ginger - wow. . . . One year. You have come so far. Thanks for including me in your year . . . I hope you and I just keep "talking" more. You are one strong lady.
Margie . . . I am so sorry about this journey with your dad. It is so hard . . . We'll be praying . . . And here to listen thru those ups and downs. . .
I am here for 2nd rad onc convo . . . Looks like I have two rad ones saying that they can neither I strongly recommend or strongly discourage me on radiation. One says benefit is minimal. . . . . One says risks are greater then potential reward . . . Arrrggghhh - I am again AGAIN in the gray zone. So what do you do?
Chemo is quickly sliding off of my table with low oncotype score. . . . Zoladex shot started last Friday. So far so Good. . . But I feel close to stupid for not doing chemo or radiation . . . No one is pushing either (and you should all know me well enough to know I get several second opinions!). I will take any thoughts both pro and con. . .
Off to a kidney MRI - yes, kidney- where I appear to have a growth . . . Probably not bc related but I would like to avoid any kind of relation to a "C" right now.
. My fingers are crossed. . .
Thanks for listening to me vent . . .
Kelleyod0
