Illinois ladies facing bc
Comments
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Well, you movie stars looked great!!! Interesting topic as soooo many people tell you to "think positive." My boss is one of them that swears by it. He says his aunt was told she had 6 months to live when her daughter was about 6. She said no, I'm going to live to see her get married. Then she passed about a week after her daughter got married. So, he keeps telling me not to think like that but to think about seeing my great grandkids get married!! I think a positive attitude helps you live better and cope better but I'm sure there are plenty of women out there that "thought positive" and didn't make it. It sure it nice to have this on-line support group!
Anyway, like I said, you guys looked great!!!0 -
You looked wonderful,ladies....so fit and full of energy. I too think it is a very interesting topic. I appreciated the woman who said she didn't join a support group to guarantee a longer survival. She, like all of us, is afraid of a disease that causes pain and can shorten one's life and she seeks support (as we do) from people who are feeling her same angst. Like you, Connie, I am very happy to have this on-line support group. Why would anyone go to a support group just because it gave them 18 more months of life?
I also think that a positive attitude increases the quality of the days we spend here, regardless of one's health, even if it does nothing for the quantity of days here.
I have not joined a support group around my home. I have basicly depended upon my family and books and you ladies. I am actually timid about joining a suport group as I am afraid I will get into something I cannot handle. The support groups near me ask that I make a commitment for nine weeks and that makes me nervous. Do any of you have any thoughts on the subject of "real time" support groups. I am not a shy person, just a cautious one.
Again, ladies, you looked so good.
Susan0 -
I too enjoyed the show, you girls were great! It was too short though! I think positive is the way to go, no one wants to be around negative..including us. I like support groups cause you get opinions of many doctors, too...and patient's...you know what I mean...you are all here and enjoy it, too!
I went to Geneva IL support group before I even had surgery thanks to a friend telling me about it. It was great, they were very caring, there were like 12 different ladies and a guy (who likes to show that you live 8 years plus and he's still around)...and the striking thing is that you hear the story of each, and all stories are different...shows you how many stages and kinds and ordeals and I think you really should consider going. It's as nice as this and if you need to get out of the house is another reason..I should, but I missed some due to being chemo sick....and just busy and tired.
THANKS EVERYONE FOR BEING HERE! i WOULD NEVER have wanted to go through my Mom's ovca without a group and now I have my own groups and I appreciate them very much. thank you.0 -
Hi Girls -
Quickly checking - more later, but thanks for the compliments! Hope you're all doing as well as possible.
Susan -
The woman that said: "I appreciated the woman who said she didn't join a support group to guarantee a longer survival"...is our very own JanClare!
Have a great day!0 -
LauraGTO: It was great seeing you guys, again on TV! I thought of you last weekend, there was a gator to be sold at school auction...in the meantime friends are looking for one for me so if you are really interested I will keep you posted! The one at the school had wiring problems so just as well they sold it before the auction.
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Hi all. Yep, that was me in the yellow hat. There's an expanded article at:
http://abcnews.go.com/WN/CancerPreventionAndTreatment/story?id=3406364&page=10 -
JanClare and Laura You two tv stars looked great! I recognized you in the yellow hat, JanClare. You made a lot of sense. I hope they use additional footage for Nightline, because it's too important a topic for short news piece. I never joined a support group mostly because I didn't have the energy to go during tx. I was lucky enough to find this one, and it was a tremendous help. Illinois ladies are tough! The article was interesting too.
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Hi Girls -
Again, thanks for all the compliments...It was fun! But, I hate looking at photos of myself - not to mention TV! They shot my bad side!
LOL But, I really felt bad about the girl they memorialized at the end...hard to believe she was only 31. That was very upsetting.
JanClare and I are walking 3 miles tomorrow and my niece, Shelby Laura, is here and she is going to join us. She wants to "practice" for the Team: No Surrender walk in Sept.
kater -
Thanks for keeping me in mind. Hmmmmmmmmmmm...if a good deal came up, I would consider it. How are you feeling lately?
Ellen -
I missed the news and couldn't find it on their site. I e-mailed them and hopefully they'll get back to me and then I'll post it here.
Connie -
ONE MO CHE MO! Yay...
Nicki - Rita - Michelle - kats - Everyone -
Hope you're all doing well!0 -
Wow! There's lots of new posts since I was last on! I have been having fun with my two little grandsons, but boy am I tired at the end of the day!
I see now why most women have their children when they are young and have lots of energy. I think we are heading for Minnesota on Thursday. It's so much fun to spoil the little guys and then send them home.
JanClare and Laura. Darn! I missed your TV debut! I did read the article link that you provided, though. How very neat!
Susan, congratulations on your new granddaughter. What a delight they are!
I'm doing pretty good during this chemo holiday. The next one (and hopefully the last) is rolling around again soon....Aug. 2nd! Im not looking forward to that!
Well, I have clothes in the dryer still so I need to get busy and then head for bed. I hope all of you are hanging in there.
Ginny, thanks for the phone call. I will get back with you about getting together after my chemo next week. I hope the rads are going well for you.
Rita0 -
Ha Ha! I just had to swoop in and write something because this makes 1000 posts to this thread! Yee Haw! Illinois Gals rule!
Back later!0 -
lAURAGTO: Thanks for asking. Thursday's chemo brought me white spots Tuesday. They gave me antifungal meds and I'm better now. I wonder if I didnt need them before, but by the time chemo comes around, the dr. doesnt ask about your throat! The big rush to feel well is because a Slovenian cousin is visiting Sunday for 3 weeks so I HAVE to feel well to show him around! He is studying to be an engineer if anyone has ideas of where I should take him and he has agricultural interests. He is 25. And works for motorcycle exhaust corporation as well. PM me your email in case i get news on a Gator or two!
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I had my first radiation appt yesterday. It went well. They took a bunch of xrays. It took about 40 minutes total. I have to get weekly xrays and see the dr weekly also. I will be done sept. 7..then it's party time....
JanClare and Laura....saw you all on the news. You guys look great. I was hoping that they were actually going to talk to you all. Oh well...
Ginny0 -
Laura If that was your bad side, I'd say you have nothing to worry about! You looked so cute on tv, but I know what you mean. I don't like pictures of myself either, and my husband loves to take them. Even the cat runs away when he sees the camera coming!
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My surgery for tomorrow (re-excision, port put in, lymph nodes out) has been on and off again all day. The tumor board met on Friday and decided I shouldn't have surgery until more tests were run, because of the path report. The path report detailed the large tumor, but said nothing of the small one. The surgeon was sure he got it and I told him to take all he needed and more. But, since the path report didn't mention it, they decided I needed more tests. I had a mammo done today and the tumor doesn't show up. The radiologist compared the old mammo to this one and showed them to me and the small tumor isn't there. I think the issue is more of there being cancer cells within .2 cm of the inked margin and they feel it might have spread more than we thought. Nothing shows on the mammo and we don't have a good breast MRI facility here, so they are getting me into Memorial in Springfield in the next few days.
I have talked to so many nurses, doctors and techs today, they all say different things. The radiologist said my other breast needs a thorough exam, so he suggested an MRI of that. The nurse coordinator from the cancer center said it needs to be checked, because if they do a mastectomy on the right, they need to make sure the left is clear. My tumors were in the lower quadrant on the inside, I think that is the concern that it has spread from right to left. I had a mammo done on the left, but this has me wondering now.
She said the oncologist is going to call me and I hope he calls soon. I feel like I am being pulled in different directions. I had surgery 3 weeks ago and find all this out today, the day before I was supposed to have surgery #2. I would rather do it right, but this is really stressing me out. I don't know why no one called me Friday to tell me this. They didn't call the surgeon until yesterday, his nurse called me at 8:30 this morning.
I am glad I am going to a bigger facility to get the MRI, I think a fresh set of eyes reviewing my case will be good. I am going to talk to all my docs about the pathology dept at our hospital. I have no faith in them now. I know I fell through the cracks on everything, it has been like that from the beginning. I had horrible pain and tenderness, the lump was very visible, put on antibiotics for a sinus infection and the lump is no longer visible. The lump was not in the same location by the time I got to the surgeon, which was only a few days after my first set of tests.
I don't think I will care if they do a double mastectomy, I hate to go through that on the left if there's nothing there, but this has stressed me beyond my limits today.
Nancy0 -
Nancy, There will probably always be a seed of doubt with all this...but I would truat your oncologist to make the right choices. I had a MRI of the breasts which showed much more clearly the tumor than it showed up on the mammogram or the ultrasound.... so I am glad to have had one. One another note I have 8 more rads and I am done! My axillary area of skin is getting quite irritated...but this still beats chemo. This is more exciting than college graduation. I wish you the best......Pat
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Kater:
Would your cousin like to visit the Chicago Botanic Garden. If you go later in the day, they have concerts on Tuesday and Thursday evenings. The Tuesdays are better. They try to teach you to dance Tuesday and that could be too much.
My husband thinks he should go to the Chicago Commodities Market (corner of LaSalle and Jackson) as they deal with agricultural commodities. They have an observation gallery.
The Museum of Science and Industry is always cool. They also have these archetectual sight seeing boat trips on Lake Michigan that people like.
Does he like the outdoors? Mt husband and I just went up to the Chain of Lakes State Park and rode our bikes....just grogeous. That could be hell for you, though.
I will let you know if I think of anything else. I had to entertain a woman from Thailand who spoke no English and I speak no thai. We just went to "pretty" places and just pointed and said beautiful over and over. I think your cousin speaks English, though.
Ihope you are feeling okay. Entertaining while under the weather is a challenge.
Susan0 -
Chicago Commodities Market: that sounds great! I hope that Izidor will go online and we can arrange for anything he wants to see...in the past we have had Slovs go on the trolley and boat ride...my paternal grandparents came here from Yugoslavia then, Slovenia now (via Ellis Island on the boat), and I met this cousin last May when I was fortunate to visit where my grandparents grew up. My lifetime dream! I hope to go this fall as well as soon as I know what rads do to me! Izidor talked to me quite well, but he tells me this trip is mainly to work on his English speaking skills for his career. I do so hope he has a good time!
DOES ANYONE HAVE IDEAS of how close I can plan a trip, I figure rads through first week in October..my surgeon said I could fly, my arm seems slim and okay...they will be harvesting grapes in October but I think I will miss the initial harvest.0 -
Kater How about the top of the Sear's Tower or Hancock building? Either one is a great view whether day or night. Museum of Science and Industry and/or the Shedd Aquarium are also nice. Concert at Ravinia could be fun if he like music, and maybe not so tiring for you. I don't think I would have had the strength for very much sightseeing during chemo.
Hope you feeling well, and the white spots are gone!0 -
Kate- I have to say that I agree with the Chicago River architectural boat tours. They are outstanding! I love to take my guests on a tour on a nice day. There's several different companies that do the tours- so far every one we've been on has been good. Here is one- http://www.chicagoline.com/archcruise/
Remember you want the river architectural cruise
As for when you can fly- I flew to Sonoma about 3 weeks after rads with no problem. Please remember that you need to go get a compression sleeve before you fly if you have had a mastectomy and lymph node removal. (I can't remember what you had- sorry) Also, if you had reconstruction surgery, you should talk to your PS. I'm not sure what happens then!0 -
Oh, almost forgot! I've made the commitment to do the Avon Two Day Walk in Charlotte, NC this October. It will be one year from my diagnosis, and I'm determined to show that I have my life continuing! My neighbor and I are training together.
I just finished setting up my fund raising pages. If anyone would like to donate, I'd be so appreciative!
Our team is "Striding For A Cure". http://info.avonfoundation.org/site/TR?pg=team&fr_id=1281&team_id=40830
My personal page:
http://info.avonfoundation.org/site/TR?pg=personal&fr_id=1281&px=36152100 -
Thanks for the URL, that sounds great. Thanks to everyone for tourist ideas, even if I don't write each time.
I had lumpectomy, +axillary 13 out (4) the surgeon said I could fly... but he did not mention a sleeve. I figured I would need to read up on that and perhaps exercise each hour or get up, I think it will be like a 12 hour flight. I suppose I could schedule a few weeks after...maybe radiation techs would tell me. Wendyyyyyyyyyyyyyy??? 8-)My cousin sent photos from the highest point in Slovenia yesterday, I doubt Starved Rock would thrill him!0 -
Hi everyone,
Ihave one more regular rad and 5 boosts to go. My left armpit is very red and painful...but I see the finish line ahead and can't be any happier about that.
Best wishes......Pat0 -
Hi everyone, It's been awhile since I've checked in. Finished my last taxol on Tuesday, but will continue on with herceptin (every 3 weeks) for 40 weeks. I will have my rad sim on 8/14. A couple of people have asked me if I celebrated because I finished the chemo part of my treatment. I'm happy to be done however for some reason I don't feel like celebrating until I'm completely done. I still have the side effects from the taxol so I guess maybe that's why:( I also have a swollen arm (not the at risk side) that no one can explain. I am very excited to be going out of town for a couple of days with my family-I just need a change of scenery-it will do me good!
pat-hope your rads continue to go smoothly
Rita-I'm sure you had a great time with the grandsons-have you taught them to golf?
Jan/Laura-saw you on tv-you both looked great!
Wishing a great weekend to all!
Michele0 -
Hello everyone! Wow! We've hit over 1,000 posts to our thread. Now that's proof that we Illinois gals stick together! And so much has happened since that first post. Several of us are about through with another phase of our treatments. We had the chance to meet at JanClare's lovely house, and of course we have our TV celebrities! How exciting!!!
Pat, doesn't it feel good to be counting down the last few days of rads????? YEAH!!! How is your fatigue level?
Laura, unfortunately I missed your TV appearance, but I can't imagine you having a bad side! :-) That must have been exciting. I saw the photo of JanClare with her yellow hat and think she looked pretty sharp!!!
Kate, I hope you are feeling better and getting ready for your visitor. Unfortunately, I don't have any good suggestions for you concerning entertainment. I had thought of Starved Rock, too but see now why that probably wouldn't be too exciting for him. Hey, there's always the casino! :-)
Nancy, I had an MRI on both breasts before I had my second surgery to get clear margins. I think that it's a good decision even if it postpones the surgery a few days. The MRI will tell the story and you want to have all the info that you can. I had my MRI done at Susan Komen Clinic in Peoria. Like Quincy, Bloomington doesn't have the best diagnostic techniques. I think you're wise to go to the bigger area. Please keep us informed.
Well ladies, I'm back from Minnesota and was glad to walk into a quiet house! I had a ball with my little grandsons but gads were they BUSY!!!! And Wow! Am I tired! Still I wouldn't have traded this week for anything. KATS...how I admire you! You must have a high energy level!
Well, I need to get regrouped. I hope all of you are doing well. Hang in there gals! We're getting to the end of this!
Rita0 -
Hi Rita,
You know I feel so much better than I did during chemo. Every now and then, usually on Fridays or Saturdays, I ache all over and it hurts to move anything. I feel washed out and very, very tired....not to sleep tired...just too tired to move. It does not last more than a day and I just push through it. All in all its been some kind of year....since this all started in January. Does the shell shocked feeling ever go away?
Bst wishes.....Pat0 -
Hey sisters, just peeking in to say hi. I miss Illinois (never thought I would say that!). Sorry I missed the TV appearance, too!
Love and prayers, Deb0 -
Rita -
Best wishes to you...I will be thinking of you on Thursday...klick your heels three times and repeat - Illinois girls are tough. Hang in there - it's just one mo che mo! Glad you had fun w/ the grand kids...I'm sure they love seeing you.
kater -
I hope those darn white spots are gone by now!
Ginny -
Best wishes to you w/radiation. I hope it goes well and I hope you have few s/e's! Try to store up some energy for our walk on Sept. 29th. We'd love to meet you!
smerf -
Thanks for the compliment. It's so funny you said your cat runs when he sees your dh with the camera! My beloved little pooch is the same...I have to bribe him with treats just to get him to smile for me! LOL
Nancy -
How's it going? Did you have the surgery? You're going through hell right now...but just hang in there...things will get better. Hope you're doing okay.
Pat -
I agree...radiation is so much better than chemo. You're almost at the finish line...you go girl!
Michelle -
Hope you had a great time getting away...congrats on being done with chemo. You have endured the toughest part. And you managed to remain upbeat. Good luck w/ rad sim...say hi to Dr. Weyburn for me!
Deb -
Awww...you can come back to Illinois and visit us anytime! Glad you checked in...hope you're doing well.
NICKI -
Where the heck is Nicki?
Jan -
Best wishes to you w/the walk...how exciting!
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Everyone...hope you're all doing well...isn't this weather great!
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This is funny....kater wrote that her cousin has agricultural interests and works for a motorcycle exhaust company...my suggestion for her is to take him to a race track that sells corn on the cob! LOL (maybe I'm the only one that thinks this is funny) LOL0 -
I am still hanging in there. I talked to my local Reach to/for Recovery person Friday. She happens to be the chief nursing officer at the hospital, too. She thinks the delay is worth it and the MRI is a very good thing to have done. I agree, but just having such a horrible time back and forth last week was frustrating. I am calling the surgeon today hoping they can go ahead and schedule the surgery based on when the MRI is going to be. One of my brothers and my sister will be here three days after the MRI and I want the surgery then. It will be a huge help to have them around for mom and my son. There are a few things I need to consider when I get the MRI results, which will affect the surgery. If there are tumors outside the area he removed (that didn't show on the mammo), I will have a mastectomy on that side. Another thing is getting a good look at the left side, mammo showed clear, but I understand MRI shows more.
In the meantime, I am making the best of the waiting time by working and finally feeling really good after the first surgery. I am developing a new line of hair accessories for girls and teens, I have been creating them and having girls at church and my teenage nieces test them.
I got my hair cut shorter than it's ever been, but I want a short wig, so I thought this was a good start. It will be easier to care for after the port insertion, lymph node removal and whatever else they take.
Thanks!
Nancy0 -
Nancy -
Let us know the MRI results...Hopefully you'll have a plan soon.
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Girls -
Rita had suggested we think of a way to list our bc stats, so we all know who's had what done. It's hard to remember each of our situations. In the other thread that I frequent - we had the same situation, so I put together a fact sheet, and those that wanted, filled it out, posted it, and then each of us printed them out and keep them on hand, for reference. It's come in handy, because we all know who had chemo, who didn't, who had radiation, who didn't, etc.
But, if you feel this is personal and you don't want to share your stats, that's totally understandable...
Here it is (the easiest way to fill it in, is to copy and paste it into another package, key in the info, and then copy and paste it here):
Name: LauraGTO
Age at DX: 45
Date of DX: July of '05
Which breast: left
Type of Biopsy for DX: Needle Core
Type of BC: ILC, multi-centric, multi-focal & LCIS with Ductal Features
Size of invasive tumor/s: largest 3.9cm (ILC)
Size of in-situ tumor: 1.4cm (LCIS)
Stage: 2b
Grade: 2 (histologic)
ER: positive (80%)
PR: positive (30%)
Her2neu: negative
ki-67: favorable, less than 10%
Mastectomy or Lumpectomy: Mast.
When: August of '05
If Mastectomy, single or double: single
Clean Margins?: micro-unclean at chest wall-posterior margin
Prophylactic Mastectomy: yes
SN Biopsy: yes
Sent. Node Positive or Negative: positive
Axillary Dissection: yes
How many nodes were removed: 11
Positive Lymph Node/s: no
If yes, how many were positive:
Reconstruction: no
If yes, what type: n/a
Chemo: yes
Chemo started: Oct of 2005
Chemo ended: Feb of 2006
What type of chemo: A/C + Taxol - 16 weeks - dose dense
Radiation: yes
Radiation started: April of 2006
Radiation ended: May of 2006
Tamoxifen: yes
AI, (Arimidex, etc.): no
Herceptin: no
How was your bc discovered: BSE
Did bc show up on Mammo?: no
Did bc show up on breast MRI?: didn't have one
Did bc show up on an US?: yes
# of B9 biopsies prior to DX: 1 biopsy - 25 years ago - same breast and same location as largest malignant tumor
BRCA 1&2 status: Negative (for both)
Lymphedema: no
Tumor Markers?: no
Specific notes, complications, remarks, etc. re: your DX, treatment or current status:
I had annual mammos for 5 years. Tumors didn't show up, breast tissue extremely dense. Had an expander put in at Mast. time. Due to extreme and intolerable pain, had it removed 3 weeks later during the Ax. Node Dis. No plan of reconstruction in the near future. Mast. site still sore and underarm is still numb. Prophylactic Mast. Dec. of 2006.0 -
Laura: I do not know what some of those things mean, but I will look at my papers and figure it out later.
Dear Pat,
You asked if the shell shock of treatment ever goes away. My shell shock revolves, not around treatments, but being diagnosed. I would wake up each mooning and with eyes still closed ask myself if this had all been just a nightmare. Then I had this DREAD (fear does not work here) come over me as I realized it had happened. The treatments are getting lost in the shuffle. I will tell people that chemo was not that bad, and my family just roll their eyes because they remember it being terrible for me on those five days post infusion.
I think the shell shock description is very appropriate. Today I had to have a routine colonoscopy (YUCK) and the shell shock feelings of BC came back. I was actually rehearsing how I would handle the news and how I would tell my fam about my new cancer. Well the news was good, but those dread feelings were still there. The treatment or meds for this test are pretty disgusting, yet the worse part for me was waiting for the news. The odd thing is that they only have curtains separating people after the procedure where you wait until the fog of drugs lift and the doc gives his/her reports. I overheard a poor woman getting bad news. Her doctor said, I just really thought we had gotten it all out the first time. My heart went out to her and I just wanted to tell her it would all be okay. Ten hours later, I am still concerned for her and relieved for me. So I do not think the shell shock of it will ever really go away. BC is too big of an event and doesnt just skip out of town after a certain amount of time.
Maybe, I am wrong. I have not even gotten to my year mark (I was diagnosed August 14, 2006) and I think about it more now than I ever did in treatment. I have been told that is normal. When treatment is over, you are left with all the What the hell was that all about?
Rita, let me know how the arimidex goes for you. I do have all the leg and ankle (lets throw in hands and back on some days) pains but I am so grateful to have the meds that I will put up with the pain. I have been on it for 6 months and it certainly has not gotten worse. I am so surprised to read about the number of women giving it up because of side effects. Not me, man!
Nancy, I just know once things get rolling, you will feel calmer. As is clear from above, I know how it feels.
Sorry this is so long-winded!
Susan
PS Get your icky colonoscopies, ladies, if you are over 50. My primary said there is a very slight elevation of colon cancer when breast cancer has occurred. I know, that is a downer. He also said that we spend so much time on the BC that we sometimes forget our other body parts, including our teeth!0
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