Illinois ladies facing bc
Comments
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Hi gals! I think I've finally tackled most of the side effects of the last chemo. I meet with the oncologist on Thursday. I think he will probably put me on Arimidex or a similar drug at that time. Is there anything else I should be asking him about now that the treatments are all finished? I feel so displaced right now.
Nicki...you are indeed a busy gal right now but I still want you to know that you are really missed on this thread! Come back as often as possible.
Wendy, we've missed you too and are glad that you're back. How's the Arimidex doing? Hey, did your onc put you through a lot of tests and scans once the treatments were done?
Nancy...thinking of you today and hoping that your MRI is very uneventful. Also noticed that you do crafts. What type do you make? I am absolutely useless when it comes to crafts but I love to hit all the fairs and festivals that have craft shows. Have you ever sold on the Spoon River Drive? Are there any of you other gals who love festivals and crafts and have any of you been on the Spoon River Drive? It is the ultimate in crafts!
Laura..I'm looking forward to all the details on the walk. Wow! Everyone begins congregating early for it, don't they?
Well, today is the first day I have had any energy so I'm going to get things done inside since the temps are supposed to hit the mid-90's here. Stay cool, ladies!
Rita0 -
Morning Ladies....
Finally quiet around here....dh is a principal and he went back today...kinda nice being all alone! But this back...arghhhhhh! See my primary tomorrow so we'll see what I get to do next..personally I think I trip to a beach so I could walk on the sand would be great exercise...lol!
Rita...no scans or tests for me...just a MUGA in October cuz of the herceptin. I had an MRI for my spine due to my back tho. I never asked him re: scans. I don't think they order them routinely if you are node-negative and you have no complaints.
Nanc....sorry you have a hard time with MRI's. I am lucky I guess...no problems whatsoever.
Hope everyone is doing well. Arimidex by the way I no longer take anywhere near bedtime...too much nausea in the middle of the night. During the day I just eat a few saltines and that's that. Still early days so I don't have any other se's. But with all the c**p I am taking for my back maybe that plus the arimidex is causing the nausea...who knows! If it keeps the beast away, I can live with it.
Nicki...what 2nd job did you get?
Well....off to try and do a little housework. DH swears he dusted and swept and vacuumed...yeah, right. Then what are those little piles of cheerios under the kitchen table? Must be the little elves that come out at night.
Hugs to all....0 -
Dear Wendy:
I too have a slipped disk but in my neck, yet I am okay right now. The pain was just dreadful when I had it. No surgery was suggested as the doctor wanted to try conservative treatment at the time. Thank God it did heal. I do exercises now and physical therapy. He said, of course, it could happen again, and so I worry. The pain is debilitating when it is bad and I am sorry you have to deal with it and the BC.
I have been on arimidex for 6 months. I had forgotten the nausea until you mentioned it. Yes, there was nausea at first and I HATE NAUSEA! It went away. I cannot recall when it went away but I know it was within weeks and not months. I was super cautious about when I took it because I hated the nausea. Now I take it on an empty stomach and no problem! So I think that will ease up for you soon.
Rita, I was the worse I have ever been POST TREATMENT as I was a nervous wreck (I still am). I do not have scans. The problem I have is that Arimidex causes leg pain (I told you that) and so if the pain is there I worry it is bone pain from cancer and not arimidex! If I ran off for a scan every time I have a pain I would have daily scans!
I came to this board because I felt, as you so aptly put it, "displaced" after treatments. I read obsessively about cancer and that is not a good thing. I am a teacher and found myself spending too much of summer vacation being displaced. I am getting more relaxed now, but post chemo and rads was not a glorious time for me and it should have been.
Take care!
Susan0 -
I,m done, I,m done, I,m done, I,m done, I,m done, I,m done, I just cannot say it enough.....I,m done. No I am not celebrating...I am too nervous for that yet. I keep thinking I will wake up tomorrow and just be starting all this again. Really ....that is how I feel. I see the onc on Wednesday. Maybe I can celebrate after that. The skin under my right arm and right breast is peeling like crazy...but it does not hurt. Now I can focus on being a nurse again and not a patient. O.K. ...I will say a quiet woo-hoo!
Best wishes....Pat0 -
Congratulations Patti and Rita on finishing your treatments! Let's say a BIG WHA-HOO! May things start to feel more normal soon!
I'm so glad to be back on the boards. For the last few days, I have not been able to log-on! No idea why. I could read as a guest, but I couldn't log in, so I couldn't post anything.
I've been working the two jobs, plus doing a lot of training/walking for the two day. On Saturday, my training buddy and I walked 9 miles. This morning, I walked 4 miles at 5 am with my training buddy, then met Laura at her home at 11 am where I think we did about 2.5 miles. Seems like a lot of walking, but according to the training schedule we are supposed to work our selves up to about 40 miles a week! I don't think we are going to ever do that much- seems like over-kill for the walking.
(By the way, Laura has the most beautiful home! I'm totally jealous. )
This week is all about the doctors again. I had to get a new letter of accommodation from my surgeon (for my job), I have follow-up visits scheduled with my Oncologist and my OB/GYN, plus I have to go to the Lymphedema clinic on Wednesday. I feel like I'm back in treatment again.
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Thanks JanClare for the big WHA HOO!
Congratulations Pat on finishing the rads! Isn't it the strangest feeling to know that it's finally over and don't you still feel like you should be doing something?
JanClare...how much I admire your walking routine! Next week I am starting in again. I'm still not feeling completely right yet and I was afraid to get out in this heat today so I made next Monday my day to move on....with exercise and proper diet. I need to shed the 12 pounds total I've gained over the last 10 months. I hate the way I look right now so I have plenty of motivation to get my act together. Anyway, JanClare, you are showing us that we can move back into the active, busy world after breast cancer.
Tomorrow I'm pampering myself with a hair cut and color job and then I may do a little of Nicki's retail therapy! :-) I found that a very revitalizing activity!!!!!
Take care of yourselves, Illinois ladies. We all want to be able to walk in the September walk.
Rita0 -
Morning all...
Rita and Pat....WOOOOOOOHOOOOOOO!!!! Isn't it great! All done! FOREVER!!!!!!!!!!!!!!!!!!!!
JanClare...wow...what a lot of walking! You must have the best legs and butt on your block!
Retail therapy...hmmmmmm! With my back I haven't been shopping for anything for over 3 weeks. Maybe that would cure me (sure do save a lot of money tho).
Rita...a cut and color! That sounds so nice but I have a few more months before that will be happening. But this gray/white/brown mix is going to go! I'm thinking my usual medium brown but with little blonde tips...
Pat...sure know how you feel about being a nurse rather than a patient. I didn't like it on this side of the exam table.
Rita....onc also put me on 1500 mg calcium and 1000 U Vit D3. Couldn't find the exact mix in one pill so I am taking 2 600mg calcium with the 1000 D in a separate pill. I figure I can make up the other 300mg of calcium with yogurt, skim milk and lots of ICE CREAM. Yum.
Susan...glad you neck is OK. I agree...this pain is like nothing else I have ever had. I tried taking the arimidex between breakfast and lunch yesterday and no nausea so I guess I will stick with that time.
Well...time to go. See my PCP today for my back, the rad onc tomorrow for my post-rad skin check and then the dentist on Thurs for my 6-month. Yep Jan...sure feels like I am back in tx! No dr's next week tho...well, at least for today!
Take care everyone....0 -
Pat -
YOU'RE DONE AND YOU'RE ON TO THE NEXT CHAPTER...AND GUARANTEED...IT WILL BE A BETTER ONE! Yay...you.
Back pain is soooooooooo awful!
Susan and Wendy and others...
Hang in there...from what I've heard, there's nothing worse. I hope for pain relief for you girls...you've been through too much to have to deal with this too!
Jan -
My walkin' talkin' buddy...thanks for inspiring me. It SO helps to have pier pressure...and someone to aspire to! I am going to re-map a route by my house for us...this one will be 6 miles! Help...I hope I can do it...I don't doubt you can!
Rita -
Spoil yourself silly tomorrow...may I suggest a BMW with a CUBS logo painted on the hood! You deserve the best.
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Hi to all the Illinois Survivors...
Hope you're all doing well...btw...for those of us "rock collectors"...funny story...yesterday the crew showed up to top coat our driveway with a fresh layer of 25 tons of gravel. Just before they were to arrive, I realized that my rock collection was in a corner of the driveway and would be scooped up by the back hoes/bob cats they would be using. So I ran out there, in my stocking feet (and stocking feet on gravel is not pleasant), and picked up and carried every rock to a safe place. I was laughing really hard...I thought the only girls that could possibly understand what I was so feverishly doing was my Illinois Girls! No kidding... I must have moved 200 rocks and sure enough just as I was hauling off the last load...they showed up. Whew...rock collection...live on! LOL Kater - you especially can relate...
End of story...the driveway looks great. but,...I was really shocked, when I thought the charge was going to be $800. I misread the contract and it was $1200. Yikes...that was a very expensive day...maybe I should have had THEM move my rock collection! LOL
Have a great Wednesday (do you girls know what "HUMP" day is?)
Be well...neighbors!0 -
Here's my update from the MRI and the onc visit.
The MRI wasn't too bad yesterday, I am glad I had the ativan, though. I went to the onc today and he had the results.
Left breast is clear, yippee!
Final path report is back, the estrogen was at 99% and progesterone at 96%. So, that's a good thing for future hormonal therapy.
He had the MRI report from yesterday, but he wanted to call the radiologist and talk to him. There is more ductal cancer in that area, but he didn't think the report was clear enough to make decisions based on that. He is getting the actual films and will review them with the director of radiology for the hospital here. He is calling my surgeon's office (he's on vacation this week) to put me on the schedule for surgery a week from Thursday. He is also going to have a conference call with my surgeon and the radiologist at the hospital that did the MRI on Monday. I wanted to have surgery Monday, but he thinks the surgeon needs to talk to the radiologist first.
The decision that is left to be made is re-excision or mastectomy. The report says "abnormal heterogeneous enhancement particularly along the posterior aspect of the residual seroma extending from the superior to inferior extent suspicious for residual neoplasm or possibly heterogeneous enhancing DCIS." If he feels like he needs to take much more out (I had 1/4 taken out the first time), then I am going for the mastectomy. I could avoid radiation on the breast if he does the mastectomy. We are anxious to get the lymph nodes out and tested, if the remainder are negative, then no radiation there.
I know I will get the chemo port, the axillary nodes dissection and then either a re-excision or mastectomy next Thursday, hopefully. He really wants me think about reconstruction if I get the mastectomy. He says I am young and have a very full life and thinks I should consider it. I haven't researched it at all thinking I wouldn't want it. I need to spend some time researching and see what options are there, in case I need to make that decision.
He told me I am the most complicated case they have at the moment, considering this was caught early. He said he literally jumped for joy when he saw the left breast came back clear and the hormone test was positive. He told me when I have to call after hours, if he's not on call to tell the one on call, I need to talk to him only. I did meet the other oncologists today and they said they would be happy to help me when he's not available, but he feels like my case is so unique, he doesn't want to frustrate me by having to explain all the things that have happened thus far. He really takes his time with me and it's very obvious he cares about his patients. He said he wouldn't recommend either re-excision or mastectomy at this point until he talks to the radiologist and my surgeon.
That's where I am, just going to keep praying and researching so I know what I am dealing with.0 -
Laura - LOVE your rock story!!!!!
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Hey Michele..........did you win big in Iowa????
Hope you had a great trip and found some much needed relaxation!
Rita0 -
Nancy, just want to give you big ((((HUGS))). This is the worse time, all the uncertainty and decisions to make. The one thing I would say is don't let them pressure you into having reconstruction right away unless that's what you want! One thing you have to think about is that reconstruction means a plastic surgeon and you really need the time to search out a good one in your area, one that you feel comfortable with. How can you do that by next Thursday?? It is possible to have the surgery and do the reconstruction later if you want. Even though it may be "easier" to do some reconstructions at the time of your mastectomy (if that's what you get), there are options for afterwards as well. You might want to post on the reconstruction board here for tips.
I had chemo first, so I had 4 months to make my decision, which was to have a bilateral with no reconstruction. It was a tough decision and took many hours of research- it drives me crazy that so many women are forced to make that decision so quickly when they have surgery first.
Good luck on Thursday!
Is anyone else having problems getting on the boards?? I was unable to get on at all yesterday (couldn't get the boards to even come up!), and before that I was having trouble getting on with my log-in and password. It's making me nuts! 0 -
Morning!
Laura...you are just too funny! And yep...for 1200 bucks I would have made them move the rocks!
Nancy...good luck with everything...this waiting and trying to make decisions is hard. When I was deciding when to do the genetic testing I was really researching all my options regarding possible reconstruction...I figured why get the BRCA testing done until I knew exactly what I would do with the info. There is a procedure I would have done which was the immediate recon using alloderm to make a little pouch and that's where the implant would go...no expanders are used as it is skin-sparing. I'm not sure if I would have been a candidate for that as I had had the radiation but that sounded like a great way to go. Some of the girls under the reconstruction thread have had it, some after rads and everything worked out well. Just a thought for you.....
Jan...yep...couldn't get on at all yesterday morning. I attributed it to all the kids still being off school and them being on youtube or my space or whatever...sure slows my dsl down.
Susan...since I have no reflex right now in my L foot if I am no better with my disk in 3 weeks I get to go see a Neurosurgeon...lucky, lucky me! Funny thing tho...was telling dh about the next step and he says..."oh no...not neurosurgery...you will lose your hair again!"...just laughed and laughed...no Tom, back surgery does NOT make you lose your hair! Also...saw the rad onc yesterday and told him about no reflex in my foot so he wants to check it. So he's tapping my knees and tells me my PCP was so wrong that my relfexes are fine. I had to tell the poor guy that was because .... that is my knee, this is my foot...that is my knee, this is my foot. He laughed and called me a "smartass"...did I ever tell you how much I love my rad onc!
Well...off to the dentist for my 6-month...If they find anything wrong there I am going home to pack and will be moving to an island somewhere.
Have a great Thursday!0 -
I wondered why I could not get on the boards.
Wendy, yes, I was told no surgery for the disk unless I lost all feeling in my arm (vs the leg) or of all things, lost bladder control. Oh dear! I am actually doing well now. No pain. I just have to be careful.
A teacher friend of mine had back problems in his lower back, and could not live with it any longer. Went to the neurosurgeon who practices out of Evanston-Northwestern and had surgery. Awoke and NO PAIN! He said it was the best thing that ever happened to him regarding his back. So maybe surgery is not the worse solution. I know you just want it to be okay without that, though.
I am coming up on my one year of dx. I am nervous about the mri and the results. The breast surgeon asked if I was doing my breast examinations and I said, "Yes, about twenty times a day." That is an exaggeration, obviously, but is sure is on my mind.
It is so good that you ladies are urging Nancy to move slowly on the reconstruction. I still have not thought about that.
I was so crazy with the two surgeries and all the decisions, I never wanted to think about it. Just yesterday my husband, who has been wonderful throughout all this, asked me if I was thinking about it. My problem is that the entire nipple was removed and the incision is such that it looks like a football! I have to be careful what bra I wear as I have one very obvious nipple and one very absent one! Definitely a less than symetrical look. I am not sure what I am going to do but I may bring it up at the one year. The thought of going back into a hospital is daunting. Considering I am getting ready to teach, I suppose it is not even practical. I would have to work on the recuperation time it would need.
Have a nice day.
Susan0 -
Rita-won enough and lost enough to continue playing for a good couple of hours, which was fun, and what I needed, and not lose any significant amount. Knowing how much we spent for the paintball tournament, I was feeling guilty about 'gambling' too much
I had fun though and thats what I needed.
I continue to have a swollen arm (not the lymph node removal side). Dr not sure why. Had ultrasound done(actually twice) to rule out blood clot and was put on antibiotics in case it was some kind of infection. This morning I went for a cat scan to rule out a port problem. So now I wait for those results. They may recommend port removal. (Things were going so smoothly-yikes!!!!!!)
WendyK-my hair is coming in the same colors as you describe!! I'll take it though - you're right it can always be colored! Hope your back is getting better (and Susan too)
Nanc512-You are going through alot now. You are right to research, read these boards, talk to others to become informed and it will help with all the decisions. I had the latissimus (sp?) flap recon on one side. Be happy to answer any questions on this if you have any.
Sorry I still haven't completed Laura's form
I will get to it.
Michele0 -
Hi Illinois Ladies. Just checking in because BC is on my mind again. Wish I were checking in under better conditions. I just had my 1 yr out MRI and the nurse called to say they want to do an ultrasound on a spot that is unidentified. I am officially a basket case because I don't know if I can do this all over again so soon. I always thought an MRI tells more than an ultrasound, any input on that? The ultrasound is tomorrow and I probably won't sleep until it is over. I need you guys again 0
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Pam-It is my understanding (from my doctor and Dr. Susan Loves Breast Book)that the MRI shows alot of false positives so please don't think the worst. I had an MRI after my initial diagnosis of a 1+ cm lump(we knew this lump was cancer) and the MRI picked up 4 more lumps. I had an ultrasound guided biopsy on one of them and it was benign. At that time, because of these other lumps I did decide to have a mastectomy rather than a lumpectomy. It ended up that all 4 of these lumps were benign.
I am sorry that you have to go through this but hang in there. We will all think positive thoughts for you.
Keep letting us know how you are doing.
Michele0 -
Pam.....I won't tell you not to worry cuz you will BUT....
MRI's are wonderful but they are notorius as well for false positives as Michele said so hang in there.
When you have the US tomorrow, I will be the one holding your right hand. I'll be the funny-looking one.0 -
Pam: I am not sure we ever even met. I am thinking hard about you. My one year out is August 14 and I am about to do that mri too. My heart just sank when I read your post. It is so good, however, that we have people like Michele and Wendy who know this stuff. A "false positive" sounds like an oxymoran to me. Let us know how it goes.
Susan0 -
Rita: I forgot to list my crafts. I make candles, bath/body products, personalized favors, sew, computerized embroidery, headbands and hair stuff and crochet. I do about everything and like to try new stuff. My sister in law has done the Spoon River Drive, her mom lives in Washington, IL. I would love to do that, we have several around here too.
Thanks for the great info, I am just unsure of reconstruction and we have one plastic surgeon in town, so I imagine I would have to go out of town. The thought of more surgery is just too mind boggling at this point. I see my surgeon Tuesday to decide what he's going to do on the 20th, so I am writing out all my questions.
Thanks.
Nancy0 -
Thanks Michele, Wendy, and Susan for your support.
NOT WORRY.....NOT POSSIBLE
I just hope the ultrasound proves it out to be nothing, I don't even know if I can handle a biopsy again so soon.
Someone also told me in smaller breasts the scars show up sometimes in MRI's. I am hoping that is the case. Now that I think about it I wonder why they don't mark the scars in advance like they have on other tests to avoid FREAKING OUT PATIENTS!!!!!!!!!
I don't think these hospital nurses have experienced news like this or something because they all say don't worry. Well when you've lived thru hell once you worry.
Thanks for letting me vent.0 -
Rita - A while back you mentioned Maid-Rite. I had never heard of it, and someone else asked what it was too. Driving in Iowa, I did see some Maid-Rites and thought of you. We did not stop to check one out so I just googled it. I see it's a restaurant that has a loose beef sandwich as their specialty. Is it like a sloppy joe? Are they only in Iowa?
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Hi Mich,
I live in Quincy, IL and the original Maid Rite Restaurant is here. People come from miles to eat there. It is not just ground up hamburger, there are other types of meat added to the mix. Also it is very finely ground. I have eaten at other places with similar looking sandwiches but they taste nothing like our maid Rites. I don't think they have other restaurants but I'll TRY to remember to check that out. I luv Maid Rite night, we live just a few minutes from there. Mazy0 -
Morning Girls!
Hey Pam....thinking about you, holding your hand. You can hold mine when I go for my 6month mamm on the 21st, OK?
Boy...those Maid Rite sandwiches sound good! But I have never heard of them so I am guessing none around the Chicago area.
Nancy...just take your time and do what feels right in your gut. At age 54 the only thing I wanted if I needed mast/recon was to look normal in clothes...but that's me. The idea of slicing off my butt to get boobies was just too out there (I'm too skinny and have no belly fat and the tram seemed also to be to involved for me)...but a butt lift WOULD have been nice as mine seems to be sinking.
Hey Nicki....where you at girl? I miss your graphics, but I know you are working 2 jobs now..take some time for yourself too, OK?
Laura...haven't driven the Z in over 3 weeks but I am going to move the SUV out of the way and at least get the motor going today. If you don't see me on the boards this weekend will you for heaven's sake call my husband and tell him I haven't run away from home but that I am stuck in the stupid car with my stupid back?!?
Have a wonderful day, girls. Isn't all this rain at night great? No dragging out the hose every day!
Hugs from South Elgin...0 -
Hi all.
Pam, sending you nothing but good vibes, hoping things will be okay.
Michelle- did you have a bilateral? I've been told that even the side that does not have lymph nodes removed can get lymphedema. That's why I have to wear two sleeves.
Oh shoot, I just got on and now I have to leave! My son scratched his cornea and can't drive for a few days, so I'm playing chauffeur. It's going to be a busy weekend. I'm walking 12 miles tomorrow, then meeting with my husband's brother and his wife, plus walking and working on Sunday.
Hope to check in again tomorrow.0 -
Okay, everyone- I'm so stupid. Wendy asked me how I uploaded my avatar. I thought I knew, but I wanted to test it- and now my avatar is gone! And I can't figure out how to fix it. The "help" instructions on this site don't seem to work.
****NEVER MIND!! **** I figured it out!
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Hi:
I am becoming like a mother hen. I keep wondering how you are doing Pam. I just am hoping so hard that all is well.
My project for the day was hefty enough. My daughter had a baby girl and we all went to my mother's nursing home (she is late stage Alzheimers (sp ?) to get a four generation picture. It was actually funny for my son-in-law who was trying to get my grandbaby 2 weeks) and my mother to focus for even a second at the same time for a picture.
The Illinois Fair was on the news tonight. I never even knew we had one. Very cool.
Susan0 -
Jan- I had a mastectomy and lymph node removal on the left and a lumpectomy (benign) on the right, and it's the right arm that is swollen. I can't help but wonder if it has something to do with the port on the right side. That's what they're looking into now.
The side that did not have any lymph nodes removed can get lymphedema? Maybe my next step would be to go to a lymphedema treatment center b/c my onc. never indicated that it could be that.
Michele0 -
Gosh...miss a few days and man...there's lots to read! Illinois girls are tough and chatty!
PAM*** -
It's hard to truly think that "it's nothing" when something like this comes up with us. But...my friend just had the exact same situation and it WAS scar tissue. We have renamed it - SCARE tissue! Hang in there...keep us posted...we're here - prn! (all you nurses will know what that means)
Hi Rita & Jan - where's kater...oh I bet she's hanging out with the visiting Sloav.
Nanc -
I TOTALLY agree with Jan and Susan, etc...don't rush into reconstruction! I have yet to decide if it's right for me, and it's been two years since I had my first Mast. I've heard/read not so positive stories about girls that rushed into it without having time to research options and INTERVIEW plastic surgeons. Good luck to you...fingers and toes are crossed for NO positive lymph nodes. Your Onc. is a doll! Good for you.
wendy -
Good luck with the back probs. - hope all went well at the dentist.
Susan -
"Yes, about twenty times a day." LOL B/4 I had the Prophylactic Mast. I could totally relate to that answer! LOL
Michelle -
The arm condition has got to be a source of aggravation not to mention concern. Hope the CT doesn't detect anything. It seems logical that it would be from the port... Let us know. Take your time with the form...no hurry.
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EVERYONE -
Hope you all have a great weekend.
I will post team info later today...0 -
A quick hello. Gotta take the dog for a walk. I will try to catch up with you all later.
Nicki0
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