Would you share your Stage IV story with us?
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Deb,
I read your story (twice) and was not bored at all. I'd like to hear the rest. After I wrote mine, I felt better just getting it all out and also straight in my mind. There is a really good thread for people on Ibrance and Letrozole loaded with very smart and articulate women. You should stop by and see if you can find help and support there. Lots of other threads for stage IV people, too.
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Djankord1, welcome and thank you so much for sharing your story with us! We'd be happy to feature it in our Members Stories section with a photo of yourself or something that represents you, if you'd like to send that to us via Private Message.
We're sorry you've experienced such intolerable pain, but we're glad to hear they've got you on a good pain management regimen. We hope you'll continue to keep the pain at bay.Here are links to the thread jaycee mentioned above, as well as some others you may be interested in; we hope you'll stop by and say hi:
We're all here for you and hope you'll find great support! We look forward to hearing more from you soon!
--The Mods
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Hello again, I am not sure where I left off, but I do want to say that I was married when I had my bilateral mastectomy, not happily. I remember staying with my Mom and Dad because my Mom thought I needed quiet, and she was very worried about me. My surgery was done on Monday and I went to stay with my Mom and Dad on Tuesday afternoon. I had no idea the pain would be almost unbearable just to try to lift my arms....My husband had taken the whole week off from work and I called him on Thursday and said I was ready to come home. He sat on one couch and I sat on the other for about 30 minutes, then he told me he was going to go golfing. My eyes were wide with disbelief!! I said, "I can't even open a pill bottle!" He said his mother was going to come over and watch me while he went golfing. Our marriage was already going down the tubes, but that truly ended it!! That was in July of 2013. I filed for divorce in October 2015 and he made it very miserable for me. Then I found out just after we were divorced in July of 2016 that he had not disclosed that he had $110,000 in a work savings plan. So I had to get another lawyer and finally after another year, I got half of that money. I have been so stressed since my mastectomy because of the divorce that I sometimes wonder if stress can grow cancer cells.
I got so depressed that I tried to commit suicide in July. I spent a few days at a psych ward and my mom and dad came and picked me up. I felt like the world was going on around me and I was stuck with no way out. I can't work and can't really volunteer either because I never know from day to day how I am going to feel. Luckily, I have a wonderful family and two great kids, but it is so easy to feel sorry for myself. I have been told that I am a very strong person, but I don't feel that strong. But then I think of everything that I have been through by myself and start to feel proud of who I am.
My ex-husband never went with me to any of my tests or biopsies when I was first diagnosed. He was at the Surgery Center when I had the mastectomy though. I really wish I would have had a supportive husband through 31 years of marriage, but he was never there for me. I almost envy women who have a supportive, caring husband or partner because I never had that. You are so lucky if you do!
I feel like it helps me immensely to write down my feelings. I have a notebook full and here I am again telling my story to all of you. I find it very interesting to read your posts. We are all in this together.
Deb
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Djankord1, I am so sorry to read about what you went through and can't imagine you getting through it at all. You are correct that we are all in this together. I will support you through my prayers and any other way I can.
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Thanks for the rest of your story, Deb. This time I read it three times. My husband and I were separated when I was diagnosed. We had been living apart for three years. We spoke often but I was not interested in getting back together as DH was. My diagnosis did it. I caved and I'm glad I did. It is not a perfect situation but works for us right now and I'm very glad to have the support. He retired fairly soon after and does all the house stuff; shopping, cooking, dishes, laundry, all of it like I had done for 35 years, including raising a child. So don't feel like you are the only one in a not-so-perfect family situation. You'd be surprised how many stories I've heard about cancer-broken marriages at my cancer center. Better to be alone than be with someone you don't love and respect and who is not supportive. The stress of that is greater. You are a strong person, as you said, and should be proud. You have your parents who sound great and those two wonderful kids. Count your blessings and forge ahead. It's the only good direction.
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Hi All,
My name isn’t Nina and I am 32 years old, I was diagnosed with stage 3 hormone neg but her2 pos in March last year - I did EC chemo then taxol and herceptin. I had a double mastectomy with lymph node removal under both arms (Cancer was in both breasts and in the nodes under both arms), then completed 6 weeks of radiation to both sides which all failed as the cancer metastized into my liver during herceptin. I then was stage 4, we changed to Tykerb and Xeloda which failed and I ended up with a feel more lesions in my liver with one tumor measuring 6cm plus New lesions in my bones. I am now on Carboplatin and Gemzar with herceptin (I am cautiously optimistic about this combo)
Thank you for this website and for all the support
Xx
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This is my contribution to Pink October, Breast Awareness Month.....
Pink October. Everyone knows that one day will be their last day but, once diagnosed with advanced breast cancer, your life has changed forever. No longer can you fool yourself you're immortal. Every day, every moment becomes precious. Your loved ones and friends mean more to you than ever. Optimism is no longer just a word, it's a mantra to live by. If you have bone metastases as I do, your life becomes extremely limited and painful. Treatments and analgesics affect you physically and mentally and you have to strive to remain the person you always have been. You need people in a way you never did before.
There is no cure for metastatic breast cancer. It can be treated but only for as long as the treatment works. Breast cancer is cunning. It learns to sidestep the treatment and enter through another door.
People tend to think that breast cancer, like most cancers, can be brought into remission but metastatic breast cancer cannot. My experience has been that people think that, with treatment, you will be well again within six months to a year but this isn't the case. Once metastases have set in, you will never be well again. I'm said to be fortunate that I have hormone receptor positive cancer and this is true because it is treatable but still, it is not curable. I'm said to be fortunate that the metastases went to my bones and not my organs (so far) and this, again, is true because bones tend to keep the disease contained within them unlike the liver, lungs or brain (the other sites breast cancer spreads to) but, if you haven't experienced the pain and debilitation caused by tumours in every bone from skull to femur, including the entire spine and every rib, you have never known pain like it.
It's time that breast cancer awareness was brought into the open. The phrase has become worn out because it's been used so much it's started to become ignored but it's not just a phrase, it's a plea from all of us living this way...... remember us....
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Leapfrog- so well said!
Bab
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Yes, very well-said. I wish more people could read your post.
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Thanks Babs and ShetlandPony, thanks very much for your compliments. I posted it on Facebook and received a much bigger response than I expected to. I'd be interested to share it more widely, too, not because I think it's a great post but because my aim is to try to educate people more about metastatic cancer and what it entails when you live with it. If either of you, or anyone else, wishes to share it, I'd be happy for you to do so. Hugs xx
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Leapfrog
What is your name on FB? I definitely would like to share it! So insightful!
Babs
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Leapfrog, well done! May we use this? Perhaps with a photo of you, and your username?
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leapfrog, very very well written. I would check into sending that to your local newspaper. It would enlighten many!
Mary Anne
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Hi all you sisters,
I call myself RoseMary (not my real name). I'm from Finland and I have read these sites quite often. I am 48 years old now, I was 41 when diagnosed. My disease was at stage IV from the beginning. I have bone metastases. One metastase in skull and some more in thoracic spine. The situation has been the same almoust seven years now. My doc do not use word NED but unchanged.
I find the lump myself from my breast. After diagnose I got surgery and then cytostaticis and also radiation therapy.
My current treatment is Herceptin, Tamofen, Zometa and Zoladex. Has been the same all these years.
The medication is only sign of my illness. I work full day and live the life like I did before illness. At least outward ewrything seems normal.
(sorry my poor english)
RoseMary
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Welcome, RoseMary. Come and join us! It is so helpful to have support from others who understand the stage iv life. This discussion board is big, so I suggest you look at the stage iv forum and pick some topics/threads that seem a good fit for you, then post and introduce yourself there. Some places to start:
Stage IV Forum
https://community.breastcancer.org/forum/8
https://community.breastcancer.org/forum/8/topics/...
Herceptin thread
https://community.breastcancer.org/forum/8/topics/...
P.S. Your English is great.
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Thank you ShetlandPony, you are absolutely right, it is helpful to have support from others in same situation. We have our own discussion board in Finnish breastcanser society too, but there is only few of us who writes. It could be many days silence there. Thats why I'm here. I will read those topics you recommended, thank you for those.
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Hi, My name is Lisa..I found the lump in my right breast in 2013..I asked for a mammogram. It did not show up on the mammogram, though the technician saw it on the screen when I pointed it out to her. She said probably a fibroadema..not to worry. In the meantime I had gone to a new primary doc because I had been feeling very weak and tired. He did blood-work and told me I had a huge vitamin D3 deficiency (Less than half the norm)..So I went on supplements. Five months later..lump in breast is still there, though because the mammo was normal and I was told probably a fibro, I ignored it..even convinced myself it was not getting larger..but it was.
So, I went back to primary to get a physical and asked him to check it.
The color drained from his face and he started to talk very nervously..I was sent for an ultra-sound.
Now almost four years later, I was massaging the perimeter of my right scapula because it felt like there was a gas bubble or something in my shoulder. I was pushing hard trying to find relief when ifound the lump at the bottom point of the scapula.
I waited two weeks until making the appointment with mysurgeon. He immediately removed the tumor.He could not believe I was able to find it as it was deep and small and not at all in the usual spot for a recurrence!
So, here I am.
I'm meeting with my MO tomorrow.
BTW- I was just given a clean bill of health NED in June and then again this September..less than 3 weeks before I found out I am Stage 4!
I feel like we are on some weird roller coaster ride!
Blessings & Love,
~Lisa~
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Hi, Lisa
Sorry to hear that you not taken seriously from the beginning.
May I ask which part of your body the desease has spread and how was it found. As you told to got NED three weeks earlier.
Hold on tight to stay on ride
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Thanks, Rosemary..I'm going to my oncologist this afternoon to learn more. So far I was told that the tumor came back in an area that recurrence normally doesn't happen. It was just below the bottom poin tof my right scapula (shoulder blade)..the same side as the original tumor. The surgeon feels that since it is pretty close to where the mx area is, it could be left over cells from the surgery or original tumor. I did 6 rounds of TC back in 2014 and Herceptin for one year, so if that is the case these "left over" cells did not respond. Personally, I have my doubts that it's been there all these years because the original cancer was a grade 3, meaning very aggressive. I'm thinking it would have been larger than the 9mm. by now. I will know more soon however and maybe have a better answer for ya.
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I have been on tomixifen since June 2016, I was also on Goseralin but I opted to have my ovaries and falopian tubes removed in March 2017.....so far so good. I have a check up with my oncologist next week. So far I have beat all the stats so we shall see what's next 😀😀😀😀
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I have been on tomixifen since June 2016, I was also on Goseralin but I opted to have my ovaries and falopian tubes removed in March 2017.....so far so good. I have a check up with my oncologist next week. So far I have beat all the stats so we shall see what's next 😀😀😀😀
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I was diagnosed with Stage 1 BC in 1996 at the age of 39. I had a mastectomy with reconstruction (saline implant), followed by 6 rounds of CMF chemo. In Mar 2017 (21 years later) I was diagnosed with stage IV BC - a pleural effusion. I had the fluid removed, followed by 3 rounds of chemo - perjeta, Herceptin, and taxotere. After 3 rounds of chemo I had a clean scan - NED. In June, I stated hormone therapy - arimidex and faslodex. So far so good, but still have not regained my strength or energy since finishing the last chemo treatment in May.
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Babs, Mods and Mab60.....sorry I've only just noticed your posts. Babe I've given you the URL to make it easier.....https://www.facebook.com/profile.php?id=100008682813392 and in case anyone else is interested.
Mods you're welcome to use my post. I think I've sent you a photo to go with it.
Mab60 that's a good idea. I'll get onto it.
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Hello Marsha,
I am sorry to know you are dealing with this decision. Like Janet, I have been at this a long time. Our circumstances may be very different, and I have no experience, so far, with the chemo you mentioned. I too am at a treatment crossroads.
My treatments for metastatic disease, over the years, have included Xeloda, A clinical trial with Ribociclib, letrozole and affinitor (everolimus) (Novartis), surgery for bone mets and multiple rounds of palliative radiation treatment to bones.
Xeloda was an oral chemo I could take at home. I did experience some side affects but tolerated fairly well. Doc is considering starting me back on it as I received benefit for several months, prior to starting in the clinical trial.
Wishing you and your team strength and clarity in your decisions. This is not easy.
- JeeNee
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Leapfrog,
Thank you for your post. I feel very fortunate to still be here, but your observations on metastatic disease strike a chord with me. More awareness is needed about metastatic breast cancer, as many of us can be living with the debilitating symptoms for a very long time. We did not "beat" it. Treatment and symptoms go on and we focus on quality of life. It can be difficult to process and live with the perceptions of others who care and want to be helpful but either don't understand that there is no fix or cure for this. Just living. Fortunately, finally, there are some wonderful advocates for Metastatic Breast Cancer Awareness who have given me inspiration and courage to keep going.
Wishing you strength and peace.
- JeeNee
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JeeNee,
How long have you been Stage IV?
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JeeNee,
I see now on a different thread that mets since 2007. You give me hope
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grrifff - I'm glad my longevity gives you hope.It is good to have something to share that is positive for others. Its a very long arduous road sometimes, but there is so much that can be done and so much life to live. When others don't truly understand what stage 4 means, it can be an added layer of stress, but you learn to give them the information you feel comfortable sharing and just keep going. Let them be amazed that you are still alive!
I just saw this message because I didn't check the thread. Feel free to pm me anytime to let me know how you are doing!
Peace
-Jee Nee
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@ Jee Nee you give me hope as well. I know this is just the beginning of a new road in this life of cancer. I will have to learn to navigate through it and live with it one day at a time..This truth is not lost on me. Nobody knows how many days we have left on this earth, so we must take it step by step. I appreciate the knowledge that is shared by those of you who have been living with this for years as it is really is such a different thing than when I was diagnosed with early stage breast cancer.
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Neverforsaken -
I'm so sorry your cancer is back. You will find encouragement and support and some wise friends here among these threads. I'm glad I can inspire hopefulness. I don't know if I am typical, but If you go to the "how many are we" thread, you might find some amazingly encouraging stories of people who have survived longer than me. My daughter and family keep me going. I will never give up. Modern medicine is amazing.
- JeeNee
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