Would you share your Stage IV story with us?
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Sue, yup, yup and yup. I wish I had the energy to go through your whole post and point out each item I agree with wholeheartedly but that would be ALL of them. We all go through these things just as you have. You are not alone in any of it. We all really agree about the drug commercials and the pink ribbons. I guess I'm just remembering those because they were at the end. I did read your whole post, twice. It just feels so good to be validated but another person saying exactly what you feel. You are actually even more burdened by your mom's illness which is, unfortunately, not unique but less common.
On the bright side (???), it is not uncommon to go a month without treatment. I go off Ibrance for a cycle when I get a UTI. And you don't have to keep your feelings inside to spare others. They wouldn't even want that, I'm sure. Print what you just wrote here and give copies to your sisters. A very large part of your burden would be lifted from your shoulders. You deserve that right now. As far as my experience with people on BCO, given your DX in Dec, you are WAY ahead of others in your way of dealing with it all.
Come over to the Ibrance thread and talk to others on the same treatment.
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Sue, I agree with Jaycea. It is ok to be scared and angry--we all are at some point. Keep advocating for yourself and good care. Let your close friends know that it is a real battle and not a pink party. I have found even some of my not-so-close friends want to know what I am going through because they are scared for themselves. It is ok with me. I sometimes wish I had known more when my mom went through all of this and I didn't really have a clue. I will pray that you get the support you need. Chris
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Sue, a month just isn't a long time to wait; we were all walking around with mets for a lot longer before they were actually discovered, and some were discovered at an earlier stage of spreading around than others. It's like that after progression, too, if you go on a trial they wait a month to wash out all of the drugs, and in that time you aren't on anything. Its also why its a good idea to go get second opinion, biopsy and sequencing after progression, because in the long run its more effective to be sure you are on the most appropriate drug available than to grab for whatever is lying around on the shelf in the MO's office..
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Hi fellow warriors,
Well I am a newbie for sure. I am 48. In January I was diagnosed with liver mets. In April 2017 I was treated for Stage 2 Grade 3 breast cancer with chemo and rads, so this has been a shock as it is to all of us. I have a husband and 10 year old daughter and I hate the thought of not being here with them. We started my daughter in counseling and her school has been very supportive. I know she will be OK no matter what but cant stand the idea of missing out on her life. I am started on letrizole and Ibrance and am encouraged by the stories of women who have been carrying on for years with mbc. I hope I am one of them! So far acupuncture and CBD oil have been livesavers. I do feel more fatigued but I think a lot of that has to do with INSOMNIA. Now that I increased my CBD dose at night I am better. I had lymphoma when I was 29, but I guess I'll never know for sure if that contributed. Although the cancer was in my right breast I had a double mastectomy to improve my chances of no recurrence. Guess it didn't help much :-( Love to you all it is such a comfort to be able to read the stories of others.
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DianeEliz we are sending you gentle hugs. It's so difficult to process everything, especially when you have a young child. We think you will find a lot of support, and people in similar circumstances in our Stage IV forum. We are all here for you!
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- I was diagnosed with breast cancer in 1996 and had no chemo or radiation, had mastectomy with implant. In 2013 I was diagnosed with metastatic breast cancer to the bone. I have had some treatment with letrozole and ibrance, which worked for a while but no longer works. I was on fulvestrant. I am currently on Infinitor and exemestane. My cancer markers were very low but are now going back up, currently 130.
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Hi Dorothye,
Welcome to Breastcancer.org! We're so very sorry for the reasons that bring you here, but we're really glad you've found us! You're sure to find this Community an incredible place for support, information, and advice. We hope you come back often, engage fully, and share your journey. We're all here for you!
Looking forward to hearing more from you and supporting you!
--The Mods
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I have just received confirmation that I have metastatic breast cancer in the liver, pleural cavity and sternum.
I was diagnosed with stage 2 breast cancer 3 years ago. After a lumpectomy and removal of lymph nodes, with only one showing traces, I commenced treatment with Letrozole. I had follow up treatment with radiotherapy and then got on with my life with regular exercise and plenty of fruit and veg.
A few months ago I started to experience pain beneath the breast and over the breast bone. However I was reassured that it was late reaction to the radiotherapy. In October I started to experience discomfort around my lower back which was diagnosed as possible Gall Bladder problems. An Ultrasound failed to pick anything up apart from some fluid on the lung. A CT Scan revealed the spread and this has been confirmed by a fluid sample taken from the plural cavity.
I am due a liver biopsy on Monday and waiting to see the Oncologist. Lots of friends and family are Praying for me and I would like to start a Prayer Circle for anyone else who needs Help.
Hugs and Prayers to anyone else in the same situation.
Megmac
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Megmac, we're sorry to welcome you to this group, but glad you found us! We know it's hard now, but once you have a treatment plan in place you will feel better. Please continue to let us know how you're doing!
We noticed you added your real name to your signature. We strongly discourage any easily-identifiable information in the discussion boards, so we suggest you change it to something a little more anonymous, for security reasons. We hope you understand.
Again, welcome to Breastcancer.org!
The Mods
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I am a 55 year old single woman living in Jasper Georgia. I have been involved with horse and dog rescue for the past twenty years.
In May of 2016 I found a lump in my left breast, went to Breast care center and they did a mammogram, took about 30 pictures, saw nothing. Now this lump was the size of a golf ball, they knew it was there, but mammogram couldn't detect it. So, we did a sonogram and a biopsy. I had Invasive Ductal Carcinoma. The mammogram couldn't detect it because I had dense tissue in my breast, so don't count on a mammogram to save your life! The breast surgeon said I needed to do chemotherapy before they would do surgery. I disagreed, I told them to take it out and then I would do all the chemo they wanted me too. I also tested positive for the BRCA1 gene. The doctors agreed to take it out. They scheduled my surgery for three months later. Needless to say, in three months, it looked like I had three breasts. The doctors said that now, I HAD to do chemo or risk losing the use of my arms with surgery. I told them "You're right, I DO have to do chemo now, but guess what, I'll be doing it at the greenville cancer center in South Carolina."
So, I went to Greenville. The doctors there were appalled at the size of the tumor (15mm) and I did 5 months of chemo. Then I had a double mastectomy. I opted not to have reconstruction at the time of surgery, but maybe later. (I'm 55 years old, single and not going to have kids, what do I need breasts for?)
I also had my Ovaries removed in July. They found a 10 mm mass on my left ovary which turned out to be benign. However, I died twice on the table during the surgery.
So, I was finally cancer and treatment free, right? Wrong. NOW they say I need to do 5 weeks of radiation, 5 days a week for 5 weeks, ugh. And they waited 11 weeks after surgery to do the radiation. I found out much later that 11 weeks was plenty of time for any left over cancer cells to have already spread and that the radiation at that point was useless.
Jump forward to November of 2017. I get a follow up pet scan and something is glowing in my left lung. Biopsy confirms breast cancer has spread into my lung. I do three more months of chemo and decided I had had enough. I told my doctor no more chemo and to schedule the surgery. April of 2018 I had the surgery to remove the tumor from my lung. I go for a follow up in 3 weeks and they schedule me for a cat scan of my chest. Results of cat scan, I now have ten tumors in my lungs.
So now, I go to my Oncologist's office to discuss options and upon arrival, I am told that my Doctor is no longer practicing there! (Found out later he was fired) I am also told that there isn't much that can be done for me now. They explained that they could give me lynparza, but it only slows down the process and patients generally only live on average of 7 months longer while taking it.
Ladies, you need to be your own advocate, ALWAYS get a second opinion. If you don't think something is right, question it. Question Everything! With the exception of my oncologist and breast surgeon in greenville, all my doctors were women. I now refuse to see a woman doctor, not because I'm sexist, but because of the gross incompetence I have experienced with them.
Edited to add: My IDC was triple negative
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Hi Gardentool,
I'm sorry that your medical team did not provide better treatment. I wanted to encourage you to seriously consider treatment with Olaparib (lynparza). Once we are Stage IV, the best any available treatment can do is to delay progression. I was on a different PARP inhibitor called Talazoparib (talzenna) on a clinical trial for almost a year and had a very good quality of life while taking the drug. Olaparib can be very effective in BRACA mutant cancers and the side effects are moderate for most patients. There are even trials with Olaparib being used as adjuvant treatment in earlier stage breast cancer.
Best wishes! Theresa
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Hi Theresa, I was on Lynparza for 6 months, but alas, it caused really bad vertigo with me.
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Hi Gardentool, I'm sorry to hear that you experienced vertigo on Lynparza (olaparib)! I did not have that symptom while taking Talzenna (talazoparib). I wonder if Talzenna could be an option for you. Best wishes! Theresa
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I am thankful for this site, and the support of all the amazing people on it, if my story can help anyone, I am happy to share it.
I was diagnosed in Nov. of 2013, at the age of 43 with Stage 2 Breast Cancer. I had a double mastectomy with DIEP reconstruction, there was no evidence of cancer in the lymph nodes so I really thought things would be okay. I felt scared, but optimistic. I took my tamoxifen faithfully. Approximately 4 years after my initial diagnosis I started having problems with my menstrual cycle, heavy bleeding, pain, exhaustion, I spoke to all my doctors (primary, oncologist, and gynecologist), everyone chalked it up to menopause. They did ultrasounds, even biopsy's and told me there was nothing to worry about, a D&C would probably take care of everything. I begged my gynecologist for a hysterectomy, but my pleading was ignored. Finally, I realized that even though I was advocating for myself, it was time to make a change because people were not listening. I found a new gynecologist who did not see any reason not to do a hysterectomy, especially where I had been diagnosed with breast cancer. After the surgery, they again told me I was fine, no cancer. A week later they called me back, turns out they somehow missed the cancer that had spread through my ovaries, follopian tubes, uterus, etc. That call was the worst, my 18 year old son was in the car with me. I tried to hold it together, but I was not successful. In an attempt to avoid scaring him, I tried to explain it to him, but I couldn't, I knew what it meant.
When we arrived home, I ran to my room, I had never felt so weak. I locked the door, dropped to the floor and cried. I called my husband at work and told him what happened and that I needed him to come home immediately and talk to both of our teenage sons. I never would have shared the news with my boys at that moment, I would have waited until I had time to take it in, until I had myself together, until I was stronger, but I did not know the news was coming, they told me I was fine. My husband explained it to the boys as best he could. We did not share statistics, but we did share facts. My boys were 18 and 15 at that time.
Next month will be a year since my Stage IV diagnosis. A constant roller coaster is the best way to define the year. I feel like I have accepted this diagnosis and what comes with it, as best I can, but what comes with it, can quickly bring you down, even on your best day. I take Ibrance and Letrozol. So far, I continue to show NED (no evidence of disease). I have made lifestyle changes, because in my heart, I cannot just depend on the drugs, or other treatments, I believe I need to do everything I can, even if it buys me just one more day, it will be worth it. Those changes include a diet consisting of fruits, nuts, veggies, chicken and fish. I have given up alcohol, which at this point, seems so wrong, so very wrong, and all the junk food. I would be lying if I said it was easy, but if it buys me just one more day, something amazing might happen on that day, or it could be just a regular day with the people I love, both are worth it.
Enough of the details, let me share with you what I believe in my heart and what I hope my husband and children will someday believe. I believe that I am lucky, I am fortunate, and I am blessed. You might ask yourself, how can she feel lucky with such a devastating diagnosis, well my opinions changed three days after my initial diagnosis, I was having a pity party for myself while getting ready for work, the news was on, but I was basically focused on why me, life's not fair, I don't deserve this. Then a story about a young girl caught my attention, she had been brutalized by her parents, her entire life, until they eventually killed her at the age of 10. That story has forever changed me. At that moment, I realized how many people never experience love and/or kindness. Can you imagine living your entire life filled with fear? My pity party took on a whole new meaning, I pitied myself for not realizing how lucky I am, I have love, I have support, I am surrounded by kindness. By no means is my life perfect, I still argue with my husband and kids, work makes me crazy some days, there is always bills to pay, but its still good. That child lived a very short life, she woke up in fear, went to sleep in fear, her life was filled with only fear and pain. I promised myself that day that I would focus on how truly lucky I am and that I would not let cancer consume me with fear. The fear is still there, but I will not, can not let it consume me, life is too good for that. I know the day might come when the pain, fear and anger win the battle, but I will fight it as long as I can.
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I was standing under the shower when I first felt the lump in my left breast. My husband was asleep, and I decided not to tell him about it till morning, even though I had a strong urge to share my worst fears. Instinctively I knew my life, our lives, would change from that point forward, but nothing could have prepared me for intensity of the next few weeks.
My GP saw me first up in the morning, and by the afternoon I had a mammogram, an ultra-sound, a biopsy, blood checks and an ECG.
My first appointment with my surgeon the following day confirmed I had breast cancer. I had no idea what that really meant but suddenly faced with the possibility of my own mortality, I felt quite claustrophobic – there was no escape, just an intense feeling of dread.
Next came the MRI, CT and bone scan, then back to the surgeon. Stage IV cancer. What did that mean? I had no idea what the implication of that meant. I was sent off with a nurse who explained what I should expect, including getting a port for chemo, and that I would be seeing an oncologist who would oversee my treatment. I felt numb. I have adult children and all I could think about was how I was going to tell them I might be dead in 5 months time. I thought about all of the things I needed to do, and I cried a lot. It was tough on my husband too. We have always been close, and he was suffering my grief with me.
My appointment with my oncologist was the day before my port surgery. She had a copy of all my test results, and asked me several questions. "If you agree, I'm going to cancel your surgery, and we will put you on the Kisqali trial" I didn't know what Kisqali was, but I didn't really care. I'm a total wimp, so anything to escape surgery sounded like a reprieve to me. She explained that we would treat my cancer similar to diabetes, and that I would take the kisqali and letrozole to shrink the cancer.
That was January 2018. My cancer has shrunk over 50%, and I am leading a fairly normal life.
Every day I think about cancer, but it doesn't rule my life. I like to read the threads on this site, and have started one of my own "Keto" where people can share info related to that lifestyle. I am always heartened when there is a new breakthrough in cancer research, and enjoy sharing insights with others in similar situations.
Jackie.
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Sydney and Jackie, I really enjoyed reading both of your stories. So much difference and sameness among us all. Sydney, loved the story about the young girl. We could all use that kind of attitude adjustment now and then. And what a reason to not answer your phone in the car! And Jackie, I'm really glad your MO got the K going and you are doing well. Sometimes, we put all this effort and time into a post like that and wonder if anyone reads it. Well, I did and enjoyed it very much. Thank you.
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Hello,
I found the lump myself. There is no history of any cancer in my family and I am 65 yrs old. I thought I could skip a few mammograms. Went to get a mammogram and that nurse was one of the nicest, kindest people. She did a bunch of things she wasn’t supposed to do once she felt the lump. I talked with her several times when I did not hear back from my Internist about the results. Went back a week later for a biopsy. The nurse was there again and was very supportive. Then the other diagnostic tests started. Breast MRI, PET scan, etc.
Being told I was stage IV with mets to my lungs was a total shock. Only one lung tumor was large enough to biopsy, but there are numerous other “micro tumors”. I have struggled with telling people. Had to tell my adult children after Thanksgiving dinner! They were/are very concerned. Recently attended my husband’s 50 yr high school reunion. I asked him not to tell anyone. That was my choice not his.
I am very happy that I have responded well to my first chemo. Currently I am living a very normal “doesn’t look like Ihave cancer” life. I have talked to the BS and MO about a lumpectomy, but they do not agree. Any surgery or radiation is for palliative reasons only. I am thinking about a second opinion, but why?
One of the most difficult things for me is getting people to understand what metastatic means. They have no clue that chemo will be forever. I will be in some kind of treatment until death or they find a cure. And we have no idea when either will occur.
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JCSLibrarian, I enjoyed reading your story, too. My husband went to USC (the other USC, South Carolina) and we both went to graduate school at UGA. Even though we are out west now, we love the southeast. Also, you have my initials and I've worked in lots of libraries. We may be related. I have multiple lung mets, too, only one was big enough to biopsy. They are stable now on Ibrance/Letrozole. Someone recently posted on the Ibrance thread that Ibrance is being used in triple negative BC successfully. It is a really easy drug. I'll go find the link and post it here soon.
Thanks for posting your story. All the best.
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Thanks, Jaycee49! I will definitely read up on this medication. My oncologist and I have different opinions on the goal of treatment. I want to think there is a chance for cure or remission. He stresses maintenance and quality of life for as long as possible. I am doing well right now. The chemo is working and my QOL is good. I suppose I shouldn’t complain. I just really do not want to have cancer. Good luck with your treatments
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hi. I was wondering how your ladies mets was found?
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ufcknights: My lung mets was found after a PET scan during the initial testing and diagnosis.
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My mother she have 71 years and she have breast cancer mestases in bones and 2 spot in livr 1.5 cm and she took armidex and stoped and take noe armosin 25mg the doctor say maybe we should take chimo ,we can find chimo without effect ?!! help me i love my mom and i m so scary i can t sleep .............and my mother she doesn t know she have breast cancer i on t tell her and she is very good thansk
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Hi,
My first diagnosis was Stage IV Inflammatory breast cancer, mets to spine. (DeNovo)
Textbook IBC. Doc thought it was mastitis, prescribed antibiotics. 3 months later getting a port installed for chemo.
I am 41, single with 3 daughter's. The only thing I have changed in my life since then is I quit my job as an Electrician, and I have gone back to university to finish my degree as a Historian.
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I was diagnosed with Stage IV breast cancer in January of 2010. I was considered to be Stage IV because I had bone mets. I was treated at MD Anderson in Houston where they were very aggressive with surgery (I kept my breasts), radiation, chemo and finally Tamoxifen. Almost 10 years later I am still "no evidence of disease" but checked and scanned frequently but so far so good!
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thank you for sharing. I am 48 years old and just dx with Stage 4 metastatic TNBC. I was originally dx July 2012, stage 2B. Had chemo, bmx with 26 nodes removed(3 had cancer), radiation and delayed recon. 2 weeks ago, I had a pain in my back that got so bad I went to the ER. After a CT with contrast. I was told I had lung nodules, suspicious nodes and a lesion on a rib. Biopsy confirmed my worst fears. I am currently having the rib radiated and start Abraxane and immunotherapy in 10/18. I have been in touch with MD Anderson and am awaiting an initial appointment to see what they have to say.
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Dear Tracyahc1971,
Welcome to BCO and thank you for sharing your story. We are very sorry to learn of you stage 4 diagnosis and we are so glad that you reached out to connect with our members. We hope that you will stay active here and benefit from the shared experiences of others who are a part of this wonderfully supportive community. Please let us know if we can be of help as you navigate your way around. Please keep us posted on how things evolve and your appointment at MD Anderson. We are here to be of help.
The Mods
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thank you so much. I’m trying to learn how to navigate the site. lol. I appreciate the opportunity to have this resource.
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wow! Your story is an inspiration and offers hope for those of us newly diagnosed. Thank you for sharing.
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I was diagnosed with stage 1 ILC 6 yrs ago. Now, six years later, I have metastatic breast cancer, with recurrence in lymph nodes in my neck and chest. This was on Friday, October 4. On Friday, Oct 11 I had my first chemo treatment. To say this was a shock is an understatement.
When I was diagnosed with BC 6byrs ago, I started a blog, mainly as therapy for me and a way to keep family informed. I am blogging this time around as well. It gives me a format to talk it out so cancer is not the main topic of conversation with family and friends. If anyone is interested:
Trying to stay positive and hopeful.
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