Hi, I'm looking for support and someone to share my feelings with about my recurrence. Anyone out there with experience?
about me --
57 year old active, non smoker, with no breast cancer in my family. My first diagnosis, (stage 2a - 2 centimeter - grade 2) - mastectomy surgery - 4 cycle dense dosage chemo treatment - reconstruction - all began in July 2004.
In June of 2005 had good numbers from blood work and examine. July 2005 I found a lump on my scar, it was the same cancer. Had another surgery and I am going through chemo again, AC last time Taxol this time.
After chemo I'm scheduled to do 7 weeks of radiation.
I'm needing to hear from those of you who have been through this and doing well. I'm trying to live one day at a time and not get to far ahead of myself but find myself thinking about another recurrence. I tend to get into the "what if's" if I'm not careful.
Hi Donna,Welcome.I havent had a recurrence but i just had a mastectomy and chemo.Your in the right place for support the women here are great so stay here and someone with your experience will get back to you. Hugs, Tammy
This is the right place to come for support and information. I haven't had a recurrence, but had mast, followed by chemo and rads. I am one month post-treatment. I thought all along that I wouldn't worry about recurrence, but I do. I try not to let it consume my life, though. I'm sure someone here has been through this and will reply to your post. Keep a positive attitude - that is very important. You can get through this!L & H,
Hello Donna! My name is Deb and I was diagnosed w/ a recurrance in Oct, 2003. I had first been diagnosed in April, 2001. I also had a mastectomy, 21 lymph nodes removed (19 positive) 4 rounds of a/c followed by 12 weekly taxol treatments and 36 rads. My CEA jumped from 12 to 29 in a 3 month period. (I was continuing to go every 3 months for checkups rather than every 6). I was in total shock. Same bc cell but a small spot on the sacrum. I am now on weekly regime of Herceptin and Navelbine. Every 3 weeks I get something to help strengthen my bones. (can't remember the name of it) The Herceptin has been proven to help keep the bc from recurring. My CEA counts now are between 2.8 and 3.0. Knock on wood..so far so good.
I know that you are scared. You have every right to be. But I want you to remember that bc can be managed. It is not a death sentence. I have talked w/ the gals on this board and they have given me the strength and courage to face each day. I hated having to think about going thru treatments again. I hated laying awake in the dark wondering if I was going to die. I hated thinking that I wasn't healthy again. I hated the thought of having to have a ct scan and mugga every 3 mos. I just plain hated to think about cancer and hated the words breast cancer. There are still times that I cry and get depressed but now I am facing it head on. I will not let this darn disease get the better of me. There are new treatments that are being approved each and every day. I plan on living a long, long time. Please don't hesitate to come here and voice your fears or questions. You will find the support that your family and friends can't provide unless they have been thru this. Let us help you.
I have not had a recurrence, but have had EXTENSIVE, HEATED, discussions with my oncs regarding this. Finally one did tell me that a recurrence a the scar was completely treatable. I had mast in Dec with 5 pos lymph nodes. I went through the treatment you are going through now. Am finishing rads right now. My taxol was in 12 weekly treatments, easily tolerated, and actually my rads while easy are somewhat painful here at the end, but again totally tolerable. These ladies here on the forum will be with you so stay in touch.
If you will read my posts, you will see my angry responses to both my oncs regarding cancer recurrence. Again, my rad onc has said that your situation is totally treatable and believe me that is quite a positive response from one negative doctor.
Thank you all for responding to me so quickly! I wish I had found this site earlier. And Deb you described me perfectly, with my brain getting so far out in front of me that every day is full of tears and sadness. I'm glad to know that you guys are here to help me get through this. I'm trying to work on having an attitude that is more accepting and enjoy today. I want to be around the people I love and enjoy them and I know I can't do that if I'm worried and sad. I'm reminding myself that's why I'm going through all of this and I don't want to waste a day if I can help it.
I do have a couple of women who live in my area that are survivors and they are terrific with their support. They have told me that while they understand the fears associated with breast cancer they aren't dealing with the reality of a recurrence so I should seek help and understanding from someone who has.
Thanks for the good news JUJU - I heard that a recurrence at the scar area wasn't as bad as finding it somewhere else. Hum, makes me feel like a big baby but I'm still in shock having had cancer twice in less than a year and frankly I'm wondering if I should have had radiation the first time. My onco told me that less than 2% of women who have a mastectomy have a recurrence on the same side and that I was on the unlucky side of that statistic.
I know that wondering about something that happened a year ago isn't very useful - I'm trying to look forward to healing and I want to be around for a long time so I'll do what I need to do.
You guys are great - thanks Tammy, Kathy, Deb and JUJU.
Hi Donna- Welcome to our fabulous corner of the internet! I am so sorry though that you had a need to find us...but we're here for you! I think that people are just plan mad at a recurrance...and I can understand how you must feel. Just think of all you learned and the strength you gained during the first bout will help get you through this second one.
You may want to check the role call to see who we are and where we're from.... I am in Michigan, currently 36.
Hey Donna, One of our memebers whose name is Deb (cupycake) had a recurrence shortly after her original diagnosis and she is now about a 20 year survivor. I am sure she will respond to you when she sees your post but I wanted to tell you there are good stories. The Roll Call is third down in the list on the title page. There are some brief bios and some pictures of us, also. I believe the first post is mine so you will see Gma by the Roll Call title. I am from Fort Worth TX area now, home is WV and OH area. Hugs Mary K.
I am the one that MK was referring to above. I was diagnosed at the age of 33 (20 years ago)- diagnosed on March 28th of 1985. My tumor was around 1 centimeter, no lymph nodes were involved at the time. At the time of my diagnosis they did not feel that I needed chemo or radiation (remember, this was 20 yrs ago) - just a modified radical mastectomy. Well, about a year and a half after that I started having problems with aches and pain in my upper back. For months I went from doctor to doctor trying to get an answer to my symptoms. I was treated for everything from arthritis to pulled muscles, and this went on for about 9 months. I finally decided to go to the Cleveland Clinic with my xrays (which were taken locally) and get another opinion. (by this time I had a pretty good sized lump on my sternum and could hardly click on my own seat belt in the car or get up from the couch by myself) The doctor I went to took one look at those xrays and asked me "if ANYONE had read these in my hometown". By the sound of his voice I knew that he HAD seen SOMETHING in those xrays that the local doctors had overlooked all of those months. He told me that I needed a biopsy and needed one soon. I had the biopsy and found out that I had a recurrence in my sternum.(this was now Dec. of 1988). (explaining the pain in my back, it was referring from the front of my body to my back) . I was then given 6 months of chemo and 33 treatments of radiation. It has now been over 17 years since that diagnosis and I am going strong and living life feeling so blessed to have been given these extra years of life, knowing what it feels like to see both of my daughters married and being a grandma of 3.(something I am so very thankful and grateful for). I feel that there is some reason that the good Lord has kept me here on this earth..........if for nothing else, but to give others like you a reason to give it "ALL YOU GOT" to fight this disease.
Keep a positive attitude and you are going to beat this thing for the second time sweetie. If you have any questions feel free to ask, you have found a wonderful place to come and get the kind of support that you need during this hard time for you.
Hugs and HANG IN THERE!!!!!!!!!!!!! Debbie (from OHIO) ^j^ ^j^ ^j^
"What sweetness is left in life if you take away friendship? It is like robbing the world of the sun"
Donna A: so glad you found us but sorry your a breast cancer buddy too. This forum has been a lifesaver for me. When I first started posting here I was so depressed and upset with what was happening to me. The girls here have help me in more ways then I can explain. Feel free to voice any and all the feelings and questions you have. I know I do..lol Hope you stick around....skeeter1
Hi DOnna- MK pointed you to the role call thread....I am 36, ben posting here for a couple years....but many of us here were together back in 1999 or 2000 on another site. Some of us have met once or twice, others are like regular old family to one another! And others have just found us, and we are hoping to make everyone feel welcome and comfortable.
I live in Michigan, seems we are spread from coast to coast but a lot in Michigan, Ohio and Texas areas. L&H, Lori
Just wanted to welcome you! I know you will get lots of help from the ladies here. I was jst diagnosed in July and I dont know what I would have done if it were not for these ladies. I come from a large family (8) kids Im the youngest and the 1st to have cancer so this site has helped so much. It is great to be able to talk to people who understand what you are going through. Im sorry that you have to be here but we will do our best to make it easier.Hugs:)
Hi Debbie, Skeeter, Lori and Bernadette, what a treat to hear from you.
Debbie I really appreciate your experiences - you're just what I hoped I'd find...someone who had a recurrence early on and was still around to talk about it! I went on your website and saw your picture, you look so healthy.
I'm grateful to hear from all of you. And of course each of you has touched me in a special way. Bernadette you and I were both diagnosed in July so I'm guessing we're about the same place in our treatments. I've had my 3rd Taxol treatment and will have my 4th next Tuesday. Lost my hair for a second time and hate the aftermath of the bone aches with Taxol and Neulasta. What about you? How are you? I'm feeling scared and worried on my bad days and hopeful and blessed on my good days. My hope is to begin to have more good days than bad. I'm still weepy and have the worst case of what seems like PMS that I've ever had. I understand that chemo brings on menopause but I already did that years ago. Man this stinks to go through mood swings and hot flashes AGAIN!
Thank you Skeeter - I will try and voice my feelings - it's good to know this is a safe place to do it.
Lori did you say that some of you have actually met people from this site? Wow, were you all from the same area?
I'd like to find a support group in Denver - there is one in a southern suburb on Wednesday evenings but it's all the way across town in rush hour at 6:00 and I'm not sure if I can make it. Wish there was one up north where I live.
Thanks to all of you for your help today. I feel so much better.
Some of us live in the same area, but we have travelled far and wide to meet! We have organized several gatherings over the years...the first one I went to was in Saint Louis in 2000, about 40 of us met there. The group has gone to Myrtle Beach twice, San Antonio and Cincinatti, most recently in Louisville. A small group went to Vegas too, and some have travelled to each other's homes or family events.
Personally, I appreciated the internet support more than a live group....we could chat and post whenever we wanted, in our jammies even....and this way there seems to be no age barrier. I went through tx at 31, and did not want to join a group where I would be the youngest...but here it does not matter. We are all sisters, and age differences have enhanced our experiences.
You may want to check on a local Gilda's Club, or check with American cancer society for local groups in your area.
Hi, I'm looking for support and someone to share my feelings with about my recurrence. Anyone out there with experience?