Long-Time Survivors

[LisaJ]

Happy Holidays. I am so thankful that I have found this site. I have been on so many others and this is so positive. I tend to get really down sometimes and every time I read this site, I have hope. I was diagnosed with stage IIIA in November with 7/12 nodes positive, ER/PR (-), HER2 +++. All my scans came back clear. I have started my chemo regimen and for the most part I am doing fine. I have a beautiful 2 year old named Emma who is the light of my life. It scares me to think that I won't see her grow up. I was wondering if there are any long-term survivors around. In my gut I feel like I am going to beat this and it is merely and inconvenience. Am I crazy to think that? I want to have a long life and see her grow up. I am so scared.

[RhondaH]

I felt the same way as you (I have a 5 yo son) and I searched and searched. What I've been told and you will find that the further out from dx you get, the more normal your life will become and you will not frequent such websites as much if at all. Their there, just keep searching.

Rhonda Hoffman

[saleboat]

Hi Lisa-- sorry to hear of your recent news, but glad that you found this site. I was diagnosed at Stage IIIC back in April and there were times that I didn't think I'd see Christmas. Everyday I tell myself that it is realistic to think that I'll be here until I'm 95 (I'm 35). The shock of the diagnosis was the worst part of it all (for me), and getting used to the long-term implications are not easy either.

I've copied in a link from another site that has a lot of great Stage III survivor stories. There is reason to be hopeful!

I hope your treatment continues to go well for you.

http://www.breastcancer.org/ubbthreads/showflat.php?Cat=0&Number=216452&an=0&page=0#216452

[Joe]

My daughters were 6 and 4 when Christine was first DX'ed in 1990, they are now both in college and we will be celebrating their 22and 20th birthdays in January.

She felt just like you and the thought of my daughters were enough motivation to keep her fighting.

Take it a day at a time and enjoy each precious moment.

Merry Christmas,
Joe

[Mar]

I am 2 years out from my cancer diagnosis. I have finished my chemo, thank the Lord. My latest scans and lab work are all negative, which is wonderful news. I have been shocked to find that I still deal with fear daily. My fear comes like a light switch, flipping on and off, mostly in alone moments. It comes and goes like that for me. I have decided to accept it and face it squarely at those times. I silently tell this fear that it will NOT rule my life and that everyone has uncertainty in one way or another. I will NOT let cancer take my life BEFORE I am dead. That is my DAILY choice, to chose life and hope and faith. Take all the chemo and other treatments your doctors suggest and then that is the best you can do. Love your famiy and your friends and hold them dearly. We both have a huge thing called HOPE. God bless you as you fight your cancer, new friend.

[ELAINE]

Lisa -

I was diagnosed with stage IIIA breast cancer Nov., 2001. My doctor felt certain it was fairly large so I had neoadjuvant chemo before surgery. The tumor responded well and surgery followed. I had a mastectomy on the right side and decided to wait on reconstruction. When I went for my follow-up visit, the pathology report had come in. It was AWFUL!! The tumor was still 7 cm and I had 35 positive lymph nodes. Needless to say, I was terrified. My treatment consisted of high dose chemo followed by radiation and Herceptin. I started taking Arimidex in June, 2002.

Fast forward to today, Jan. 10, 2006. I am doing great, no problems and everything is looking good. I'm not sure when I reached the point where my obsession with cancer went away, but I realized about 3 months ago that I hadn't even thought about it for awhile. I know it's hard to imagine, but each day will bring you closer to that point. Stay strong and remember that you can get past all of this.

[saleboat]

Elaine- thanks so much for logging-in and sharing your story with us. I was diagnosed in April with 3C, 15+ nodes, so to read your story serves as inspiration and lessens the 'what if' fears that are natural at this stage.

Jen

[Unregistered]

I was diagnosed Dec 1999 Stage IIIa, 9 positive nodes; my kids were 12 and 9 at the time. They are now 18 and 15 - I'm in my 7th year; no recurrence. Keep the faith. - Gabrielle

[Ruth]

This is the first time I have been back to this website in almost a year but I wanted to post to Lisa's. I was diagnosed in 6/03 and at the time had a 9 month old daughter also named Emma and two boys 6 & 8. It was a very difficult next 15 months as I went through treatment and fear...however I have moved on from fear and now have a crazy 3 1/2 year old, 3rd grader & middle schooler. Not to forget the most wonderful new love & more romance that I ever thought possible! I was diagnosed w 10/16 pos nodes; HER2 pos;
ER/PR- and I remain NED. I am almost done with reconstruction and love my new bumps! I have implants & so many told me I wouldn't be able to because I had so much radiation...but proved them wrong! They look great (better than they ever were).

Please don't give into the fear just remember that it is NORMAL and as time passes and life isn't consumed with the treatments your fear will lesson.

Bless you and the best of luck ~ Ruth

[Mar]

It is wonderful you haven't had any recurrence either. So glad you have had more children and have a great love in your life. I have a wonderful husband who I have been married to for 27 years. Sounds like we both had aggressive cancers that we have survived. I have been reading that many women aren't hit with profound fear/worry until AFTER they finish their treatment. I think, in my case, having to deal with post chemo related Neuropathy (from Taxotere) triggered my worry/fear, with a little anger thrown in too. I am coming to terms with it all and have come to understand Neuropathy and WHY I am in so much pain EVERY DAY now. My doctor is treating my pain, which has been the key to moving on with my happy life, though there aren't any medications that can cure chemo related Neuropathy, so far. Every day no doctor tells us our cancer is back is a fantastic day, one to be celebrated with our loved ones and friends. Isn't it! Have a great weekend. Affectionately, Mar

[maryb]

Can you please give me more info on your implant procedure? (I also had radiation, and was told I could not have implants) I don't want to go through that TRAM flap stuff...thanks in advance and God bless! Maryb

[maryb]

Dear Lisa, I was diagnosed in May of 1999...at the time, I had a 3-year-old and a 6-year-old daughter and I was certain I would never see my young daughter start school...I was ER/PR+, her2+, with 15 (out of 36) nodes test positve...I have done 5 years of Tamoxifen, then started Femara (and will be on it for 5 years, I think) and as of May 1st, I have just electively started Herceptin on a weekly basis without any evidence of metastatic disease....(I never thought I would live long enough to be able to take this in an adjuvent setting).......there are long-time survivors!!! so keep the faith! Maryb

[Ruth]

Mary,

I'd be happy to tell you about the implants. I heard initially from other BC survivors, nurses and one PS that I most likely could not have implants due to the my radiation. I even had extra boosts of radiation because of the number of pos lymph nodes I had. Many PS won't do this and I understand why...the failure rate is high (like 70%). I had a few things going for me to have my PS feel that I would be a success story. I am relatively young, never smoked (that was a big plus), my radiation onc said that my skin was one of the best he had seen throughout the radiation...no burns, peeling or even redness, and I understood going in that the risk was high for failure. The PS felt I was in excellent physical condition and that the site of radiation showed no skin damage or scar tissue. I also had enough muscle left. That was another important factor. I had the expander placed under the muscle last Nov. with minimal cc's initially. At that time I also had an implant placed in my left breast to eventually match the new breast we were making. I went every two weeks for VERY small fills...that was also important I think. Once I only had 25cc's put in. If you didn't have radiation they can put in 100cc's or more! Radiated skin doesn't stretch as well, nor heal as well. This took 4 months...a long process and not the most fun part. But in March I had the exchange done (I am a small size C now). He took a section of my left nimple and grafted it on, took a line of skin at my bikini line and made the areola. It doesn't look like a perfect breast but I have to say that it is still awesome! It feels completely natural and is healing wonderfully. No complications at all. I know it is not permanent and eventually (about 10 years) I must exchange the implants but it was so worth it for me. I need to massage the implants weekly for the prevention of scar tissue but that is also something that all women with implants should do. I know it is not for everyone. I was limited to what I could do because of my size so I definitely was going to try this first. I don't regret it for a moment! I got three PS opinions and more opinions from my Onc and general surgeon....they also both said to go for it. My Dr. was wonderful and he is extremely experienced with reconstruction. He goes to weekly meetings for advances in breast cancer therapies and truly has his heart around this. I wanted a PS that knew more about breast cancer than most.
Hope this helps you in some way.
Peace ~ Ruth

[dawn]

Lisa,

You sound so much like me and I too just found this site. It has been my daily lifeline, re questions, fears, pep talks, you name it. Someone is always on board or had been in the same situation to help you along. I was just diagnosed in February, have a 2 year old daughter, Emily and a 5 year old son, Kyle. That was my first fear, my kids. I had my sister almost on medication at first telling her to take care of my kids, to be their mother. I went as far as asking her and her husband to sell their home and move in with me and my husband because my kids needed her. Of course, she has been my shadow since this has started and Im so grateful for that. But I think I've finally moved on and dont think daily of what will happen. When that creepy thing happens to me now, I just look at my kids and vow to myself to watch them grow up and to be there for them. No one knows for sure but then again you can go outside today and be in the best of health, and get into a car accident. You never know, my co-worker tells me "You will go, when it is your time" I plan on being a long term survivor, as Im sure you will too. Our kids tend to bring out the mother bear in all of us, and no one knows a fight like a mother bear!. Good luck and keep checking this site, there's so much information and help.

Dawn

[fitztwins]

Mary, your posts gives me hope. I was dx in 2004. IIIC too. My twin boys had just turned 4. My goal is to make it to there HS graduation. Then I will re-negotiate an extension!

[maryb]

Dear Ruth, thank you so much for the info.....because I had lobular carcinoma(which has a propensity to appear in the other breast), I have been thinking about reconstruction with implants after a prophylactic right mastectomy.....I have to believe this is still less expensive than an involved procedure.....thanks again and take care!!!! Mary

[maryb]

Dear Janis, there is ALWAYS hope and I wish you the best of luck....I don't know if you are a religious person, but speaking for myself, if I didn't have faith, I don't think I would be here today....each year brings us closer to a cure, I hope.....take care Maryb

[Theresa McNiel]

Dear Lisa: I have met a woman who lives hear me who has lived with metastatic breast cancer for 16 years. Met another woman who has gotten 9 years out of Herceptin, from mets dx. Just read an email from someone who was in the ICU for 2 weeks with extensive mets to liver, bones and lungs, thought she was dying. That was 5 years ago and she's doing fine. So...the more you read and talk to people, the more long-term survivors you find. You must never put your foot in the grave until you are really really sick, and even then you probably shouldn't because some people come back.

I myself have yet to respond to any treatment (I'm stage IV, tried mastectomy, radiation, Epirubicin/cytoxin, Herceptin/Taxol/Carboplatin, Herceptin/Navelbine, five surgeries including getting ovaries out, numberous alternative supplements/treatments) so my cancer has just progressed steadily since dx in 11/03. I'm hopeful the new Tykerb/Xeloda (lapatanib/capecitabine) will get me some stability, I'm trying to start it next week. The key seems to be to get some kind of response to a drug. Herceptin has worked wonders for some, pity it did nothing for me. There are so many treatments to try out there, you should take heart.

Theresa in Hawaii

[Jan Currence]

Just joined this group this week. Found out about it from someone on the BC Mets List. I was first dx'd in 1994 and had a mastectomy, 6 cycles of CAF and 5 years of Tamoxifen. I was Stage IIB with a 3.5 cm lump, lymph node and vascular invasion. At the end of chemo, a lump was discovered in remaining breast and I opted for a simple mastectomy. Pre-cancerous cells were discovered, so I was happy about my decision. Was doing well until this spring. Had a hard fall onto my back in a local restaurant. There was an unmarked step from our table down to the next level and I didn't notice it. In any case, within two months, I could barely breathe. I had been treated in mid-May for bronchitis by my PCP. Then, when I went for my annual gyn. exam, he couldn't hear any breath sounds on the left side. We went to a community hospital ER, thinking I had pneumonia. Not so...had a completely collapsed left lung. They admitted me and took5-6 liters of fluid after inserting a tube into the chest wall. They had done a needle aspiration and sent the material to pathology. It came back full of cancer cells. That was also when I learned that I was Her2 +, ER+ and PR- (was PR+ in 1994). Community hospital reported lower spinal mets, but cancer center I've gone back to did x-rays, confirming those spots are still just arthritis. One of the docs had put me on Megace for appetite control, because I had lost about 30 pounds in 3-4 months. I had no appetite at all.
Now, I have an almost too active one. The current oncologist told me that Megace is also used as a hormonal treatment and that he would leave me on it for a while to see if it will help. I had bad side effects from Arimidex and Femara. He also mentioned putting me back on Tamoxifen or another hormonal drug if this doesn't show progress. X-rays from last week showed no fluid anywhere, but scarring in the affected lung. As far as the tests show, I don't have any active tumors...just the cells that showed up in the fluid that is now gone. It will be interesting to see how things develop and I'm interested in learning more about Her2 + on this board. I am 57, married and have 2 adopted children. The youngest left for college while I was in the hospital in June. I had expected to have to adjust to an empty nest, especially since we homeschooled for 19 years. But, I didn't plan on having the cancer come back the same week as that happened. My husband was downsized from a great job in 2000 and is not teaching at a tech school. He works a split shift Mon-Thurs and sleeps in the afternoons. That makes things even quieter around here. I've experienced the positives from meeting online friends, so I am hoping to make some here. I also have fibromyalgia, diabetes and hypertension. I've had two car accidents...the last one being in 2004. I am still in therapy for that, including at-home electrical stimulation for the muscle spasms in my back. Now that I've rambled enough, I'll sign off and read some more of your posts. I have already learned quite a bit from the few I've already read. I will be praying for each of you as we go on this journey together. The long time survival of many of you or those you've written about is very hopeful. Thanks....Jan Currence

[Jinete789]

I am just diagnosed, going through pre-adjuvant chemo and was terrified when I got my HER2 positive result, thinking it was the final straw. thank you to all of you for these posts.

[Mar]

I just saw your email. I wanted you to know that I was terrified also when I was told I was HER2/neu with overexpression, with three lymph nodes involved, and that I was hormone negative, and that my cancer was quite aggressive and was likely to return. I just celebrated five years in remission, since my surgery, the first week of August. Take heart from that and know it is possible to beat this disease and live many years. I just had CT scans and bone scans done that didn't show any sign of return.
Each day is a gift of sweet sweet time. I am STILL learning to not have moments of fear. After all, I am human.
I suffer long term side effects of nerve damage(I have severe nerve endings pain that causes me agony) to my arms, legs, and groin area(called Neuropathy) from Taxotere, one of the chemo drugs they gave me, post surgery. I go around singing "I can do all things, through Christ, who give me my strength". It helps me when my pain gets worse and I am weary from coping with high end type pain. I have lots of family support and encouragement and that helps too.
Good luck to you as you go through your treatment. I will pray for you in this fight so many of us have faced. God bless you.

[ElaineM]

Hi,
I was diagnosed in January, 1999 and plan to live into my 90's. Many advances in breast cancer treatment were made since I was diagnosed that have helped me. Many more new medicines and treatments will be developed in the future, so if you take good care of yourself, are proactive and assertive with your docs you have a good chance of being a long term survivor. Stay positive !! Have hope.

[Mar]

That's a wonderful attitude. Each year I survive,(5 years now), has brought me more confidence that all my surgery and chemo treatments DID destroy all those monster cancer cells.
Being a nurse and having doctors and medical professionals speak bluntly and not sugar coat my prognosis in the face
of an extremely aggessive cancer made me more realistic.
The good news is that I have learned to live in the present and find great joy in every experience and happy memory I make. I have become a survivor who assists other women going through surgery and chemo whenever I am asked or see the need. I am also educating oher survivors suffering long term side effects to seek treatment from their doctors.
I don't know 100% I'll live to age 90. But, I am alive in the present. I'll take that and live with gusto.

[Gabrielle]

Hi Friends,

Just wanted to say I've completed almost 9 years. Still NED. Hang in there.

-Gabrielle

[lkc Gumby]

Hi Ladies,
Just wanted to add my story for the new girls. I ws dxed May 05.
Stage IIIC, 12 out of 14 pos nodes ( 2 nodes completely replaced by tumor ) primary tumor2 cm + , No clear surgical margins after final MRM,,lymph & vasc invasion, IDC, with lobular involvement and Pagets! oh yeah ER/PR Negative, grade 2 -3 , AND her postive!!! Blah..blah.. blah...
I had a prop. LMM, which showed atypia, and hyperplasia.

Fast forward to today -3.5 yrs later. I have No evidence of disease, I have yrly PETS, I had bilateral recon ( implants) back in 2006, and have gotten my life back pretty much to normal. You will too. It's a hard road, but doable.
God bless, life is good.

[Mar]

My goodness. You are indeed blessed that your treatment worked. I just hit the five year marker from my diagnosis date.
Still in remission. My oncologist told me yesterday I don't have to see her again for an entire year, unless I need her beforehand.

[schoolteacher]

Ladies,

Thanks for all the positive stories. I go for my fourth chemo Thursday, and I really need to hear them.

Amelia

[juanita]

made it 4 years in september and my rad onc told me i don't have to go back for a year! good luck to everyone!

[Mar]

That is wonderful. I saw my oncologist yesterday too. I don't have to go back to see her for a whole year. Lets have a wonderful year. Mar

[Soccermom]

Just saw this and wanted to say...Congrats !!!!Gumby...enjoy life!

Hugs,Marcia

[Leah]

This is my 12th year living with bc.
I'm usually not on these boards anymore but someone private messaged me so i started reading. I do now have stage lV and am getting treatment, but have been for several years. It isn't 'normal' but it is my normal now.
Seems I will be around a long time still.
Leah

[Mar]

I was just popping in to say I sure hope you are hanging tough and not too sick. God bless.

[Leah]

Have you tried any of the medications available for nerve pain ie. neurontin, or just regular pain meds? I don't think you should have to 'deal' with the long term side effects of cancer treatment. There is help available.

[Christine]

hi!, long time friend. I have been thinking of you, but was affraid to call, to hear another dooms day report from you. Nice to hear you are more positive about your survival and keeping your communication on our support group message board.
For me..........it is sooooo nice to hice to hear from you. Hope the other side of your family life is getting good results.
Call me if you wish.
Hugs, Christine

[pmm10414]

Thank you so much for this site. You read so much and much of it is so scary. I started treatment at just had 3d AC treatment today. Already schedule for Taxol and Herceptin prior to surgury. You long time survivors give great home. Thanks for this site.

[Mar]

I just read your posted message. I stopped right then and prayed for you, asking God to be ever near and give you strength as you weather the side effects of yesterday's chemo treatment. you have great courage and will get through this storm. Let me know how you are doing, when possible. Mar

[pmm10414]

I am doing OK this morning except feeling a little nausea more than last time. I hope it will only be a few day. I ended up staying in quite late. I pray every night that the Lord above willl help heal me and make me strong to get through all this.

[schoolteacher]

Patty,

I hope you are feeling better.

Amelia

[elcalabrese]

I guess I qualify as long term. I started Herceptin in March of 2002 and have remained stable.
el

[asahizuru]

Hi LisaJ,

I posted my story in Profiles in Courage so I wont go into any detail here. I was dx 19 years ago Er/Pr neg and her2 positive. In UK herceptin was not available back then and I didnt get on to that until 2004. I had by then exhausted all available chemos and it was looking like I was heading for Phase1 trials. My onc then checked out my her2 status from previous tissue. For me it has been my miracle drug and I have had no further progression. My extensive bone mets are stable.

Asahizuru.
xxx

[pmm10414]

I started herceptin 3 weeks ago and am also on Taxol. I have been in pain and have neuropathy (got it from AC too after onc said it was impossible). Anyway, all the news from all of you is encouraging. I pray each day the Lord heals me. They are doing chemo before surgury and all are surprised how much shrinkage has been achieved thus far. I have 8 more treatments then surgery and radiation. It is scary having this tumors still in me, but all agreed that the size of my tumor dictated this course (along with lymph node involvement)

[Jackie07]

I was first diagnosed in 2003. Though I've got some bumps along the way, I am glad to say that I have made it close to 6 years. And my latest biopsy were 'benigh' - the surgeon stated that she had never seen anything like it - the 'clip' inside of my old underarm surgical site had got pushed up to the surface of the skin and made it look and feel like a 'growing' lump.

ps. Now I'm headed to the 7th year in mid July, 2010. [3-4-2010]
ps. Headed to the 9th year in mid July, 2012. [11-15-2011]

[asusa12]

I had the best wig in 2006 when I was first diagnosed. My stylist shaved my head and I cried. Now my own hair is back and so is my cancer - mets to bone. Spent the interim 2007-2009 traveling to places -I- wanted to visit [with tour groups]. Now on Tykerb and Xeloda and no one will give me any timeline. Love my job; love my life; love my son. Don't want to miss a thing, but probably I will.

[Jackie07]

Bumping this thread up, so our new members can find it more easily.

[Nancy L]

Inspirational story of a 17 year stage IV survivor. Does anyone know the website she is refering to in this interview---the one for just stage IV survivors?

http://www.nytimes.com/2010/04/27/health/27case.html

I had read some place before that 2% of stage IV patients survive beyond the expected but I didn't know the other specs. Good for Dr. Love for taking a look at why---maybe she will learn something that helps the other 98%.

[bejuce]

Kathy posts on the Stage IV board at breastcancer.org as pointed out by someone at the Young Survival Coalition site.

So much hope here!

[Jackie07]

I clicked on the hyperlink on the article, and this is the site she's talking about:

http://community.breastcancer.org/topic/8

I think the 'Living Beyond Breast Cancer' site is also devoted to stage IV long-term survivors. www.lbbc.org (http://www.lbbc.org)