Where are all you survivors?

survivor1952

I joined this group months ago but no one seems to be posting at all anymore. Thats really disappointing because as survivors we need to share our journey & each day for us is a victory. Please share your story of diagnosis, treatment, fears, successes. It is amazing how hearing the stories of others gives us strength and hope.

I am a 12 year survivor. During my yearly mammogram a mass was found in my left breast. I had a lumpectomy & sentinal node removal of 3 lymph nodes. Two days later I was called to return for additional surgery as cancer was found in one of the sentinal nodes. My incision was reopened two weeks later & I had the remainder (27) nodes removed. They were all clean. I did chemo, radiation, 2 years of Tamoxifen and 4 years of Arimidex. I still dread my yearly mammogram. I go into anxiety mode about a month before it each year - I am there right now, my mammo is Dec. 11. The recurrance fear never leaves.

I just read the book "Dancing With Fear" by Leila Peltosaari. It is tips & wisdom from Breast Cancer survivors. I laughed, I cried, I thought about things again that I had forgotten about. It is an amazing book to read whether you are a new survivor or a multi-year survivor.

I would love to hear your story.

wilmawm

I was diagnosed last June - can I call myself a survivor yet?? I had a 6-month follow-up mammogram on my right breast; it was fine. The cancer was in my left breast. I had a lumpectomy and sentinel node removal in July - the surgery went well; clean margins, no cancer in the lymph node. I had convinced myself I wasn't going to need chemo, but I was wrong. I started chemo in September and had my 4th and final treatment last week! Yay! Chemo has been much easier for me than I anticipated - I've had virtually no side effects other than hair loss and some tiredness. I get a break for a few weeks - I',l be starting radiation treatments in January.

I'm trying really hard to improve my odds by eating healthily and exercising regularly. Thanks MFP for helping with this! I have let the anxiety get to me a few times, though, and have binged/stopped exercising for days at a time. Other times I fear I'm getting almost too obsessive about tracking my food and exercise with MFP and my various electronic toys - my phone, my fitbit, etc. Is it a way to focus on something else and essentially ignore my cancer?

This "journey" feels so odd to me. In some ways I feel as healthy as I've ever been. I'm essentially at my goal weight for probably the first time in 30 years, I feel good, I exercise an hour every day. But I'm not healthy; I have cancer! It's surreal.

To all you survivors who have more years with this than I do - how do you dewl with the fears about recurrence? I try not to worry, but it's difficult sometimes! For example, I sometimes have these random pangs - not pains - in my breast that had (?) the cancer. It's the sort of random thing that never would have bothered me before; it's not pain, it's just a random feeling. I don't even know how I would describe it to a doctor. I guess I should say something. But I don't want to be a hypochondriac.

survivor1952, thanks for starting this thread, and thanks for mentioning the Peltosaari book. I'm going to have to read it; I would imagine it would speak to some of the fears I've been experiencing!

I too look forward to hearing more stories.

survivor1952

Wilmawm: I was told that as soon as you are diagnosed you are a survivor.What a positive image to have of yourself!

Congrats on finishing chemo!!! I was not so lucky with side effects. 12 years ago they did not have all of the anti-nausea drugs available today. I had bad reactions to the anti nausea drugs as well as the chemo. I was scheduled for 8 rounds of chemo but had to stop chemo after 5 rounds. The oncologist said not to worry he felt 5 rounds were good.

Radiation is pretty easy, you just get extremely tired with it. You will have a permanent suntan breast for a few years too.Radiation makes the breast tissue firm too, I had a firm breast like an 18 year old! One firm, one saggy (I was 47 when diagnosed)

I think everybody always has that fear of recurrance. You just hang in there. I do the same thing with every pang, pain, tingling feeling, that is so normal to worry.

jerseygirlatheart

I was diagnosed July 2010. I was one of the lucky ones who was diagnosed in early stage 1, it was found by mammography. I had a

lumpectomy and sentinel node removal and then 7 weeks of radiation. No chemo. Mammograms can save your life. It saved mine.

It could save yours. People dont realize a mammogram can find tiny calcifications like I had. They were tiny specks in a cluster that

can't be felt. If I did'nt get that mammogram when I did it would have been worse. I would rather take that time to have the

mammogram and be alittle uncomfortable then not to.

survivor1952

Congratulations! I am always so happy to hear someone say positive things about mammograms. There are those news articles that pop up occassionally about some new study that disputes the need for mammograms and to that I say @#%& !!! My mammogram saved my life too, the dr told me by the time I would have felt my tumor it would have been too late for treatment. Monthly self exams are great but you do need the mammogram. Glad to hear your sentinal nodes were clear. I had cancer in one of mine & had to have all the nodes removed 2 weeks after my lumpectomy/sentinal removal.

Glad to hear you are doing well in your third year. I hope more people participate in these threads, it really does help to have support from other survivors. God bless you all and keep you healthy!

irhyme

Hello group (friends I haven't met?)

I am a little over a year cancer free. I was diagnosed with bilateral stage 0 bc on January 26th, 2012. Because I had two primary breast cancers and I've also had cervical cancer and a rare malignant skin cancer, (also Guillan Barre - but that's neurological) I decided, along with the tumor boards blessing, to have a bilateral mastecomy and reconstuction. I have been dealt some bad genes!

My bilateral mastecomy was on 3/1/12 and my final reconstruction surgery was 6/11/12. So, I'm one of the lucky ones - they removed the sentinel nodes and they were clear and since I did the whole shebang surgery, I didn't need radiation, chemo or meds. I just have to go get checked every four months and I still sweat that appointment.

Oh, I failed to mention that my diagnosis was the result of my FIRST routine mamogram. Yes, a mamogram saved me... I caught this super early. I was 41.

I joined MFP to help me lose the 50 lbs of weight I've put on over the past 12 years. I am a mom, wife and full time worker. It's hard to make time for myself but I realize that I have a higher chance or recurrence - thereby reducing my chance of being here for my daughter - if I don't. I love the program because it already has many of the less popular natural foods we get at our natural food market. The other programs I've tried don't have them and I really don't like creating custom food.

Well, I need to go roast some brussel sprouts so I will catch ya later! Thanks for "listening!"

survivor1952

Welcome "irhyme"!

dolphins4ever

Hello everyone! I too was hoping this would be an active group of fellow survivors! My journey seems so long and drawn out but I think I am finally back to normal (whatever that is).

In about July or Aug of 2010 while in the shower I felt what I thought might be something on the outside edge of my right breast. At first I didn't really think too much about it. I was only 38 and had already had a couple of mammograms by request because my mom had post menopausal breast cancer in her last 60's. As some time went by the spot seemed to be getting bigger, I mentioned it to a co-worker and my husband. They of course told me to get to the Dr but it was like I already knew but didn't want to know? I finally was convinced to make an apt for my yearly physical with my family Dr. (I had a hysterectomy at age 26 due to pre-cancerous cells in my cervix, they felt that since the tip of the cervix had the cells that the uterus was at risk as well...turned out not to be, so luckily I had 2 children already otherwise that would have been devastating... but now in hind sight with a bitter divorce and an ex that spend every minute of his life trying to turn the kids on me and whatever else he can do to make me suffer) So, it's Oct. 2010 and I go for my physical, I mentioned to my Dr. and point out the area. She insisted it was just a cyst because it moved around? Sometimes it felt bigger than others, so I thought it was sometimes closer to the outside wall than others? A bit of relief set in. I was having a mammogram anyway so they marked the area I pointed out and took several shots of that area. It was determined then that I needed to schedule a biopsy. Ok, now the little bit of relief was gone now! I can't recall how long of a wait there was between the mammogram and the biopsy, at the time everything was happening so fast but now trying to recall the details isn't so easy. So I have a biopsy a week before Thanksgiving, so maybe my initial apt was closer to the end of Oct? After taking several samples the radiologist came right in the room and said they would be sending out my samples for further testing. Now I am in a bit of a panic...I said "does that mean it's not a cyst?" He said "I can tell you that it is definitely NOT a cyst" At this point I wanted to puke and everyday after that for the week until I would get the results! So, the day before Thanksgiving 2010 I went to work and my husband came and picked me up so be with me as I got the news. That morning was awful, I was shaking, wanting to vomit, anything and all my co-workers were saying it would be fine, I was too young but I knew deep down exactly what they would be telling me!
We got to our 11:30 apt with the Dr. that delivered both my children and she came in, sat down and said to me "There was absolutely NO signs indicating this...you have invasive lobular carcinoma" My heart fell on the floor and my hubby started crying. My Dr. had already lined up for me to see the Oncologist and Surgeon that same day. She gave me a hug which was odd because I have been Dr'n with her for 20 years and she had never given me a hug? I sent a text message to a co-worker that said "It's cancer, I won't be back today!" Went up to second floor, discussed my options as far as surgery, chemo, radiation & therapy. Then I went to the third floor to meet with the surgeon and we discusses my surgical options. My head was spinning, I had handfuls of pamphlets and quite frankly, I was scared to death!! Next test on the list was an MRI of my breasts, this test showed us that I actually had 3 lumps in the same breast stacked on top of each other and the smallest, deepest one was very close to attaching to my chest wall. A lumpectomy was now no longer an option, they would need to remove to much tissue to Keep it breast looking. Now I had an even tougher decision to make...remove one breast or 2? I put lots of thought (almost every minute day & night) into this and talked to people who had done both and almost everyone that had only had one removed wished they would have just had them both removed!
So, on Dec 16, 2010 before they are ready to take me into the operating room, they confirm with my that I did indeed want a bilateral mastectomy. Yes, yes that is my final decision! Why you may ask? Well the law for insurance company is that they must make the old breast look like the new breast, so if you are going to have surgery on both anyway, we might as well start from scratch, RIGHT? Our clinic and hospital in Northern WI doesn't have a plastic surgeon and I was pretty atament that I didn't want to have my surgery 1 to 3 hours away. Surgery went well, they removed like 10 lymph nodes and I believe 3 had cancer.

In January I had a port put in on my right side, I found this procedure to be worse that the mastectomy. I don't know why but I was so miserable for 2 weeks before it mellowed out. I began my chemotherapy on Jan 10, 2011. I had 4 very intense treatments over 8 weeks that I couldn't work through because I worked in a bank around people and dirty money the Dr said NO because I would have no immune system. They warned me I would lose my hair but I wasn't expecting it after the 2nd treatment!! Being a girl of the 80's hair was my life. I was devastated, I would cry in the shower and bring the gobs in my hand to my husband. We went and had my head shaved and I wore scarves mostly. I've never been a hat wearer so I still wasn't comfortable with it and the wigs felt to fake. I learned that it was cheaper to pick out a color of material to go with an outfit and have one co-worker or another sew some "hems" all around the edge. I had so many colors! I donated them to the clinic when my hair came back in late August. After my first 4 treatments I went back to work but for the next 12 weeks I went once a week for a treatment of a different "cocktail". I used very little nausea medicine but did experience tiredness. Working 8+ hours a day was about all I was good for. After those 12 weeks I switched to one treatment every 3 weeks of herceptin which I was spose to get for a whole year.
Well, in Aug 2011 my echo showed heart damage! Stop the herceptin treatments....now we spend the next 10 months doing different things to try and get the heart function back up but were not successful. The cardiologist determined I would get no more Herceptin and basically hope for the best (I did get it during the 12 weekly treatments and then I think 3 more after that). So now in July of 2012 I get the go ahead to pursue a plastic surgeon an hour away. We went to see her and she went through all the details of the different types of reconstruction. More confusing decisions! UGH! She was wonderful! She gave me a suggestion as if I was her sister and that is exactly what I did! I went 3 hours away to St. Cloud, MN to an amazing micro plastic surgeon Dr. Houle. He preformed a DIEP Flap procedure Oct. 31, 2012. For those that may not e familiar, he removed my lower belly roll and created 2 (larger that I was hoping for) very real looking breasts! He did an amazing job! I m so lucky and so grateful! I now have to tummy roll (which leads to my pants falling off) and 2 new plumper breasts. I was a D to start with and I am atleast that now (I'm still wearing the bra the plastic surgeon gave me at my first post op apt..I'm chicken to try any on in the store! I have decided to not bother with getting a nipple done. I do not miss the cold weather indicators! (ha ha) I did get a staph infection in my abdominal incision but was caught way early, they put me on antibiotics and cleared it right up! I am healed 100% now and I am ready to start walking and watching my calories!
I have battled with my weight my whole life and the steroids I was on during chemo helped me really balloon up. I lost about 80 pounds before the reconstruction, I was so worried about what I was going to look like!
This has been an interesting walk down memory lane...and chemo lost most of my memory. Had to ask my husband a few questions...lol
Hope I didn't bore you all, but looking forward to "hanging out" with other survivors! I was also told that you are considered a survivor as of day of diagnosis! I take the tomoxifen for 5 years!
Thanks for caring,
Tami

survivor1952

Tami - Wow! Your story is awesome. Yes, I too wish this was a more active survivor site. That was my intention when I started it.
We alll have different stories to share. The best support comes from other breast cancer survivors. I am at 12 1/2 years now & I am very open about talking about my journey. I wish you continued success with your health and hope you & the others will remain here & continue updates. Thanks, Rosemarie