Posted on: Feb 4, 2009 06:25 PM
Posts 1 - 30 (63 total)
Apr 7, 2009 10:14 PM mmliv wrote:
Laura - are we the only three Hoosiers? Then I would recommend that all ladies move here since there is so little cancer!!!!! We've met on another forum...... but I can't remember which one. I live near Richmond.
Apr 26, 2009 08:24 PM jai1950 wrote:
Hi fellow Hoosiers. I just found this thread so I thought I would say hello. I live south of Indy in Franklin. I had a right mastectomy on 3/25/09 and I am having all kinds of problems. I go see the oncologist on Tuesday to see if I have to do chemo or radiation. Surgeon says my lymph nodes were clear. Hope all is well for all of you. Judy
Apr 30, 2009 09:06 PM mmliv wrote:
Hi jai1950 - Appears you are just starting on your journey; I've just finished my surgery, chemo, radiation, and now started Femara which prevents estrogen from being formed in our bodies.
What did the onc say about chemo or rads? I had the Oncotype test done because my cancer grade was a 3, but lymph nodes clear - it showed a high chance or recurrence so I pretty much had to do chemo. I had radiation because I had a lumpectomy.
May 12, 2009 05:48 AM, edited May 12, 2009 05:50 AM by Laughjoyfully
I am here 96th and Michigan - north edge of Indianapolis - just reeling from the shock of mets after 18 years ... glad to see some hoosiers - just found this thread..... feeling less alone now I know you girls are here ....
May 13, 2009 10:42 PM mmliv wrote:
Linda - 18 years! and it is back.... cancer stinks. No you are not alone; we are all fighting.
May 14, 2009 06:56 AM Laughjoyfully wrote:
Yes it does - on my 2nd Onc right now - getting better care - still up and donw - loking for a good real life support group - didn't find one before - I think I need one now. So far they are out of my range - so maybe I will be the beginning of one - I started a Meetup.com group for Indiana so hopefully some women will come out of the woodwork and we can band together.....
May 19, 2009 06:01 PM, edited May 19, 2009 06:02 PM by jai1950
Went to the Oncologist today. I got good news, I don't have to take any chemo. Just have to take Tamoxifen for five years. I can do that. Sure is better than chemo.
Linda-- so sorry to hear about your mets. I will remember you in my prayers. Judy
Jun 24, 2009 09:11 AM Survivor07 wrote:
Oh...I'm here...from Sheridan/Noblesville. Having 2nd bout with cancer. I Started chemo last November to shrink the 12 x 8 cm "mass" (Invasive Lobular Cancer). Had my 2nd mastectomy about 6 weeks ago and am now doing radiation until the end of July. Get my new boobie next summer after everything heals. I can't believe we're the only Hoosiers here!!
Jun 24, 2009 11:18 AM holtbolt wrote:
Calling all breast cancer sisters in the midwest and beyond... can you do me a favor? I know this is off the topic and I hope it's okay to post this but...I am trying to win a contest for my son (to meet his idol - Joe Perry, Aerosmith)... all you have to do is click on this link and click on the thumbs up icon to vote for our entry (legit site, legit contest, MOST deserving young man!)... can you please help me? Just trying to bring a little joy into my son's life after all this depressing /chemo stuff... voting is only June 23-26... please vote? It'll only take a second... help me bring joy to this boy! :) Thank you so much! P.S. It says you can only vote once, but if you have more than one computer I think you can vote twice.. lol We are only in second place by about 30 votes and voting ends Friday!!!
P.S... I'm a Hoosier.. I'll be back to meet you guys later...
Jun 24, 2009 12:34 PM Bee54 wrote:
I'm a Hoosiers too! So happy to see others, I tried to start a thread for Indiana women (or men too) but didn't have hardly any response. I live in Perrysville, A town of 532 (+ or -- a few). Perrysville is 75 miles west of Indy, close to the Illinois line. My BS and PS are both in Indy, my surgery was at St. Vincent Womens Hospital. Had BiLat Feb. 3rd., I get my implants on July 7th, i'm so excited, really sick of these expanders.
So happy to meet you Indiana sisters!
Jun 24, 2009 12:58 PM crazy4carrots wrote:
Hi to all you Hoosiers from a northern neighbour!
I'm always interested in learning about why the states have different monikers -- as in Empire State (NY), Keystone State (Penn). Those I understand! So here's the question:
Why is Indiana called the Hoosier State?
P.S. I've been to Indianapolis
Jun 24, 2009 04:25 PM, edited Jun 24, 2009 04:29 PM by O3132W
Hi Hoosiers! One more joining the Indiana women with the big C. I live in Indianapolis, near Greenwood. Age 72 and recently dx DCIS and will be having lump. surgery on June 30. Depending on the pathology results my intension is to have the three (3) week shortened radiation course. I have been told that they do that at Central IN. Cancer Center located near Community Hospital (South) Has any other hoosiers had this. I wonder about the side effects and/or after effects. PM me for add'l info. Good luck to all of us. Cathey
In answer to the question: I have always been told of the story from ages ago when all in Indiana was farm land that when a visitor approached a cabin and yelled that the cabin would yell back "Who's air?" which later became hoosier. Thats what I was told growing up in Indiana.
Jun 25, 2009 11:37 AM Laughjoyfully wrote:
I am not too far from you - or from Cathey. I had/have trouble finding local support and still working my Onc - seeing number three today - I am so tired of going in scared - what will I find out he should have told me months ago? That is my pattern. I went to George Sledge, but his nurse was the pits at communication and he is never available. A really nice man - knowledgeable - but he never ever sent me or my Onc a report as promised. $500.00 down the drain. I need the whole package - I have started a local support group on Meetup - but in spite of lots of interest of those wanting support and sending them all invites, only two have joined anld they do not participate.. soo .. where are all the Hoosiers? Is there a secret society to which we are not invited??
Jun 25, 2009 01:09 PM O3132W wrote:
Sounds like you are in it without guidance. Personal Message me with your Dx. Have you had a sterotactic biopsy? I think I can provide you with some info that might help you. Have you ever heard of a Nurse Navigator? Do you have any dealings with Community Hospital or St. Francis Hospital? Have you every heard of I.W.I.N. foundation? Have you ever heard of CICOA? Simpathy helps us a lot but practical advise and detailed information helps also. Good Luck to us all. Cathey
Jun 26, 2009 10:57 AM Survivor07 wrote:
I see Dr. Jenelle Miller (Oncologist) at Hematology, Oncology of Indiana down by St. Vincents (down on 86th street). I absolutely adore and trust her completely! She is extremely good about translating medical lingo into terminology that I can understand. The nurses there are also absolutely SUPERB!! HOI is such a wonderful place that has aided in my recovery.
Jun 26, 2009 02:41 PM, edited Jun 28, 2009 12:59 PM by Laughjoyfully
My new Onc is with that group - LOL. It is Dr.Birhiray, and he is going to consult with my original Onc and give input on my treatment. He figured out my original DX was Stage III - I never asked then and they didn't tell me. although they didn't think I would survive, my tests came out well in the end and here I am:-) Of course now 18 years later I am "out of the blue" Stage IV. Anyway I was so glad to meet him and his staff are super. He knew about every topic,study and trial I brought up and is looking at some treatment I know about and he didn't. Super super man.
I had no support the first time round - I called two or three places - eventually 8 weeks after surgery someone turned up from Reach for Recovery, I had asked to talk to someone before my surgery, 11 weeks earlier! However, I had a great Onc and surgeon. I am a proactive self starter, but this time, without a proactive Onc, etc (they retired) an immediate terminal prognosis, my nephew (my cancer buddy) who was doing so well, suddenly dying 10 weeks ago from Chemo, my brother dying suddenly three weeks ago from heart problems and my family being thousands of miles away in England - it was all too much - even for me!
St. Francis was supposed to help me as my #1 Onc is with them but in a month they have not called me back, he is still looking into that and still no call back. The Wellness Center took four weeks to return my initial call, called back when I was on the phone just getting the news of my brother's death and didn't call back as I asked them. Oh the positive side: I have a great Interventional Radiologist Surgeon. My dentist of 15 years (I saw today) is a Zometa expert and is very supportive as are his staff, so now I think I will be OK. Oh and the head nurses at my original Onc, finding I had been "left by the wayside' are now fully supervising my treatment - and have helped a lot. No one there wants me to leave after 18 years - so we shall see. They say my experience and my willingness to speak up will teach my oncologist and St. Francis to do a better job. They had no idea I wasn't getting tests and info allowing me to make the decisions that were needed in a timely manner. They gave me two surveys to fill out and the best mark I could give to any question was a 2, almost the worst possible. I hate to think what happens to those who do not realize they are not getting what they should. Being a really nice person is not enough in an Onc or a salaried support person - you have to DO the job too.
I have stayed with Methodist for my Mammograms (22 years) and they often give my number (with my permission) to other women who come through there and for some reason have no support or are not comfortable with what is offered. Now I have experienced how those people felt. I am so glad I offered and was always willing to be there for them until they had some support one way or another.
In the meantime, I have been treated with herbs by Solomon Wickey - trimmed my diet of all foods containing soy - (you would not believe where it is sneaking in), I have never eaten "junk" anyway so suger etc is not an issue for me. I have consulted with the world authority on Homeopathic Treatment of Cancer - he is also an MD, and am under his care. I have been doing special exercise to stimulate my healthy bone marrow to produce more platelets. Amazingly with no other treatment my markers have dropped and frozen. My platelet descent which was at 10,000 per week is now slowed to 2300 per week. I am now on Femara four weeks, and will see next week how the markers and platelets are doing.
Let's keep this thread growing - ask on other threads for Hoosiers to come here and band together. i think it could be a good thread for us.
Jun 30, 2009 12:07 PM Bee54 wrote:
Where did everyone go? I know that there isn't very many of us but i thought that this little group would stick together, support each other and become friends.
DFW so sorry about your husband and so sorry your going through all of this cancer stuff. Take care & if you need to talk, i'm here or pm me.
hugs to all,
Jun 30, 2009 12:46 PM, edited Jun 30, 2009 04:22 PM by Laughjoyfully
I am here Bee, This is the way of groups - some thrive and others take a bit more work to keep up. Hopefully if the few check in once a day we may grow and help each other.
DFW, you poor thing, gosh you certainly have had it rough. I wish NOLA was commonly known with DIEP when I first had BC - now it is too late - but then I would have had it and not lived 18 years with one very large breast and all the exacerbated back problems that brings. Oh well - at least I am here - and had my first Zometa infusion today. Onward and upward .. my old school motto,
Jun 30, 2009 02:00 PM Bee54 wrote:
Linda i'm so glad that you are here too, i could use some friends. I hope all the others come back, it doesn't sound like any of us live to far apart either. I come to Indy next Tuesday for my exchange, I'm so excited to get these TE out, just hope they feel and look good, would like to wear some of my other tops that i can't wear now because my boobs look so strange in them. LOL Don't know what i will do about nipple & areola, i'm thinking of 3D tat. I need to find some pictures of them so i can decide for sure, but no hurry right now.
Take care Linda & thanks for answering me.
Jul 3, 2009 10:19 AM Debbi5108 wrote:
I go to the center for womens health in Indy actually more like Greenwood and my PS Dr. Jackson comes from Columbus up to there and I have my surgeries done at The surgery center behind Community South. Dr. Hahs is my Breast Dr. and my onco team was at my local hospital in Greencastle, IN and my rads team was in Avon, In. I go to find out my exchange surgery date the 16th of July. I hate to hear all the trouble you fine ladies have been dealing with my heart goes out to you and I am also here to listen anytime.
Jul 3, 2009 12:24 PM O3132W wrote:
Debbi5108: Talk about coincedence. I go to the Center for Womens Health in Indy also on CL Rd and my surgeon is Dr. Hahs. I had my Lump. at the surgery center behind Community South on tuesday and am now waiting for my path. results. Dr. Hahs said there is no Lymph node evolvement after a Sentinel node biopsy. She does suspect a small invasion outside of the duct which I will find out more when the Path. reports come in.I have found this site very helpful since I had my Ster. Bio. at the Center a month ago. I also attempted to have an MRI at the Center but my rib cage was injured in the process which made me postpone my lump. a few weeks. I am 72 years old and have two children who are taking such good care of me. Until the occasion arises one never knows how much love is in a family. Makes me feel so protected and loved. Three days after surgery, I am healing slowly but seem to have such little energy and I feel very weak. I am told that I need to eat more protein and drink more water, and I am trying. Did you have or have you heard any value in having a oncotype test and does medicare pay for it? If you know. If you wish PM me. Cathey/Indiana
Jul 3, 2009 10:43 PM Debbi5108 wrote:
Cathey, On the onco test I believe they will not do it if you are er/pr + however Dr Hahs should be able to tell you that, you will probably not have to do chemo or rads due to it being caught so early, I think we are very lucky as all my kids have taken care of me as well and only one was my biological bu the chosen ones were and still are just as great as ever, the anesthesia is probably why you are still a little weak and have less energy. The surgery center was awesome and I have never had better care I have an appt at Dr. Hahs on July 16th. I am so happy to hear there are no lymph nodes involved and your prognosis is wonderful and as for medicare paying Yes if the doctor says its necessary.and you may pm me anytime as well . Hope to hear from you soon.
Hugs and Laughs ,
Jul 3, 2009 11:49 PM O3132W wrote:
Debbi: Right now I am a little confused as to my Stage (stage 0 or 1) but the path. reports should clear that up. Dr. Hahs originally told me that she recommended a Lump and then rad. I guess that the Path. report should clarify that as well. If she suggests that I have Rad, I am optioning for the 3 week shortened radiation and upon inquiring at the Indiana Cancer Center and Rad.Onc Dr Tharp I found that he can perform this shortened rad if I am a candidate. Guess I will have to wait, like everyone else, for the results of the Pathology report and Dr. Hahs recommedations. I am diabetic and was shocked when my B/S went up to 358 after the lump. I understand it now but at the time it was a surprise to me. It is back to normal now but WOW on tuesday. Good luck to us all. Cathey/Indiana