Would you share your Stage IV story with us?
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I was dx 6 months after my youngest son was born, April 22 2009. I was 36 years old. I found a lump and dismissed it as my breasts adjusting to the post-pregnancy/breast feeding. My doctor brought me in and ordered a mammogram, US, and biopsy. On the 22nd I received the call that it was + for IDC. I had a mastectomy on the right side and was stage 1 with 0 lymph nodes on sentinel node biopsy.
Delayed reconstruction and was started on Tamoxifen.
August 31, 2011, my doctor was suspicious of a pea sized lump on my mastectomy side. She sent me for an US and biopsy. Results were + for recurrence. CT Scan showed internal mammary nodes enlarged as well. Implants removed, surgeon could not get to sub-mammary nodes because they were under breast plate. Octotype came back high for recurrence. I went through 36 rounds of INTENSE radiation. Afterwards, just 4 rounds of Cytoxan & Taxotere. Again, delayed reconstruction. I received monthly Lupron shots and eventually Femara. Unfortunately, I got my cycle and had to go back to Tamoxifen. Eventually, she moved me to Faslodex.
December 2014, began to feel extreme pain in my right hip. I called my brother-in-law, who is an orthopedic surgeon. He was on vacation and advised he'd see me 1st thing Monday morning. By then, the pain subsided so I cancelled the appointment. I started logging when it hurt, time of day, what I did for relief and whether it worked. I logged this for 6 months (too long).
June 2015, I showed the log to my oncologist. She immediately ordered an MRI which revealed a 5cm lytic lesion on my right iliac wing. Ibrance was added to my treatment plan. I opted for full hysterectomy w/removal of ovaries. Later, she added Xgeva to my plan.
I received regular PET Scans which showed many lymph nodes lit up in addition to activity in the hip as stable. However, my tumor markers (CA15-3) were sky-rocketing. they doubled every week. At the highest/last point they topped out at 4,000 (normal is 0-35). I traveled to Johns Hopkins for a second opinion. Goal - find the cancer. He recommended a change in modality of scans. A CT Scan revealed 2 separate lesions on my spleen. We changed the oral chemo to Xeloda... markers continued to rise. I was vomiting blood and was admitted through the ER. CT Scan revealed progression in the spleen along with other lymph nodes. Endoscopy revealed 3 ulcers from my pain management regimen. I was taken off NSAID and now just use Nycenta for pain management for bones. Brain MRI revealed spread of bone mets to skull.
Chemo changed to Doxil, once a month. I have only had 2 doses so far and they wanted to wait to run tumor markers until and "flare" had dissolved. I go on the 18th. They will also schedule scans at that time.
Bone pain is in control with Nycenta. Spleen pain is horrible. My stomach cramps with every yawn, cough, sneeze, awkward twist of torso, ... you name it.
There is not much literature on-line about mets to the spleen so I have no idea what to expect from a prognosis stand-point. I have 3 boys (16), (13), and now (7). Everyday is a big "will this be a good day? or will I just need rest" ... the fevers get high and I've had several trips to the ER to make sure my counts are OK when they get above 101.
I'm surviving.
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In 1998 I was diagnosed with invasive lobular cancer in my lt breast. Stage 2. lymph nodes neg. I had bilateral mastectomies. 2 years later had hyster and ovaries. I had 4 cycles of AC and 5 years tamoxifen. No problems for 17 years. Early this fall, I saw a plastic surgeon about having a tummy tuck. He did a CT of my abdomen to see if I had any hernias, which would need to be fixed at time of surgery if present. CT showed fluid in my abdomen. I had a diagnostic laparoscopy in Dec 2015. Surgeon said there was a "white coating" covering all my internal organs. He'd never seen anything like it. Biopsy reports came back metastatic breast cancer. I saw an onco at Northwestern in Chicago for eval. CT with dye shows multiple tiny spots on my bones and a few in my lungs as well as the tumors in my abdomen. The good news is that the tumors in my abdomen have not infiltrated any of my major organs there. I started on letrazole. Waiting for a PET scan and the pathology from the biopsy slides. I'm also scheduled for a colonoscopy. One 2 years ago was negative. Hopefully when I go back in 2 weeks I will know what the treatment plan is. Hopefully po meds, altho I will have to be on some kind of monthly injection/infusion for the bone mets. Right now I feel great. Not sick at all. I walk 3-5 miles a day. Not looking forward to taking meds that make me sick. But I will do whatever it takes to contain this disease.
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CarolinaGirl and Firstmate -- thank you SO much for sharing your stories! You are both an inspiration to us all!
Thank you for joining our incredible Community; We know you'll find awesome support and care here.
Welcome!
--The Mods
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In Feb 2015 I had a mammogram after knowing I had a lump near my nipple for several months. Because I had no insurance at the time I waited. By the time I got the mammogram they immediately knew I had breast cancer. I was sent for testing and had my mastectomy in Mar 2015. The sentinal node showed spread to it but none of the other nodes had cancer spread to them. My PET scan however showed spread to bones and liver. I also had pleural effusions both lungs. The thoracentesis showed breast cancer cells in the fluid drained off (one liter off left lung and half a liter off the right). No sign of cancer in the lung tissue. I was started on adriamycin and cytoxin which was followed by Taxol. In Sept. 2015 my blood work shows my tumor markers to be normal. I am said to be in remission. I was started on Femara and will be starting IBrance (now that my wound has healed from the removal of tissue expander from infection). I started Xgeva three months ago. I am an asthmatic, since childhood, and continue to have shortness of breath issues. I understand some of the medications can cause shortness of breath. I am monitored closely and am hopeful that there will be a long time before recurrence.
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Dear sqrlady, Welcome to the community and thank you for sharing your story. We look forward to seeing you on the boards. the Mods
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Thank you. I am looking around and learning a lot of new things about the meds I am taking and side effects, etc. It is good to have a place to talk to others who understand what is going on with me medically.
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I found a lump on my right breast at age 60... 11/2012 and had both my breasts removed. There was no lymph node involvement but was told I had Triple Negative Metastatic Stage 4 Breast Cancer 2014 that has moved to my lungs. I have been on chemotherapy for a year now ...on my third type...my first clinical trial only worked for 3 months...then went on other drugs...again, worked for a while and then my tumors grew. I am now since 1/2016 on another clinical trial with Mifepristone in combination with Eribulin.
I am getting the feeling that we will go through this until all the "tools" in my tool box are exhausted and then there will be nothing left to try and I will die. I am always tired and not feeling good most of the time and yet when asked my doctor what is the point of feeling horrible and tired if I am just going to die anyway. She told me I will probably be dead in 6-12 months if I don't do this...this is giving me more time....but I am depressed, tired, not feeling good....the quality of my life is not good....don't know what to do...and don't feel like doing anything most of the time since I am tired...I am just depressed and really don't want to just hear pep talks...
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I will share my brother's story:
In 2014 he visited his PCP about a strange lump under his arm. The doctor prodded and poked and said it was just muscle and nothing to worry about. A year later, he noticed the lump in his breast. The doctor said it's probably nothing but let's take some images. A mammo led to an ultrasound to a biopsy to a diagnosis of breast cancer. We were all shocked. How could a man get breast cancer? Apparently 1 in 1000 men develop it. Since his lymph node was so enlarged, a PET scan was recommended. That's where they found mets to a few bone lesions. His oncologist recommended weekly Taxol, and that was too strong for his body. He could only handle 5 treatments, and now he's left with permanent neuropathy. We tried Tamoxifen, and that didn't work. Now he's been on weekly Gemzar for about 3 months. His last scan showed moderate improvement, but his oncologist thinks we should switch him to Doxil. I'm scared that Doxil will be his last option. His neuropathy has been so bad that he can barely get up without help. He is depressed most of the time, and there is not a day or hour that goes by that cancer or treatment isn't mentioned. I was diagnosed with breast cancer in October, and I was scared to tell him about it because I didn't want him to be sad about me. Thankfully I am on Tamoxifen now and doing well. We try to keep his spirits up but I can't imagine what goes through his mind. Each appointment is another load of anxiety and stress about what will come out of the doctor's mouth. I don't show my fear in front of him, but I am so sad that he was not caught earlier.
We NEED to educate men (and apparently doctors) on male breast cancer. If he was caught a year earlier, who knows how his prognosis could have been. Early detection is so important. Please don't assume it will go away, and don't be scared of testing. Leaving it alone will only limit your options later, it won't change what's already there.
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Dear loubaby, We are glad that you reached out here and told us your story.It sounds like you might benefit from the support of others who are walking similar paths with stage 4 breast cancer. Would you consider re-posting this in the Stage 4 Forum where others might see it and offer some thoughts of support and care? Let us know if you need help with posting. The Mods
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Dear LovingIsLiving, Thank you for posting your brother's story and for bringing attention to this important issue for men. The Mods
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Hey Loubaby...sorry to find you here..but there is so much support available on this website. You might want to join the Triple Negative Stage IV and Mets to Lungs Forums...I am also Triple Negative Stage IV and my mets are all in my lungs. I have been on chemo for almost a year (May 2015). I am currently on my second line of chemo. I feel there are many, many tools in my tool box and I continue to hope there will be more added as time goes on. Talk to your ONC about the depression...there are many drugs that can help with that. I understand about the pep talks....sometimes you just don't want to hear it. We all have our down days and pitty parties. Hang in there, we are here for you!
Praying for you....Julie
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I wanted to share my story as a male.
I have found it difficult to find a male breast cancer support group and even consistent information on my treatments and side effects.I was just recently diagnosed with metastatic breast cancer.
I found a lump in my chest in the summer of 2012 that I chose to ignore, because I assumed as a male it was a cyst or something else very minor. My sister who is a nurse recommended I go to the doctor, but like most "macho" males, I ignored her. When it comes to males you hear prostate, prostate, prostate. Never breast so I assumed it was nothing. In October of 2012 my regular doctor investigated the lump and recommended I see a surgeon to get it looked at. I am a veteran so all of my care is handled by the VA so my appointment with the surgeon was scheduled about a month out. I attended my appointment alone not expecting to hear anything but a routine opinion. Boy was I wrong. My first sign that something was wrong is when the surgeon investigated the lump, he left and came back with another doctor and had him check it as well. That's when he hit me with the news that he thought it was a tumor. I was shocked. Scared. Speechless. From there everything went fast forward. He immediately called upstairs and had me go up for a mammogram and a ultrasound. During the ultrasound, the ultrasound tech/doctor expressed concern with the size of the lump, and called down to the surgeon and obtained permission to perform a biopsy of the lump, and my lymph nodes. One week before Thanksgiving I was officially diagnosed with Stage IIIC Breast Cancer. Even after the initial news I was prepared for stage 1 or 2, never in a million years did stage 3 enter my thoughts. I had a full mastectomy, went through 6 rounds of chemo, and 32 cycles of radiation. I was on Tamoxifen until my recent diagnosis (Almost 3 years).
Off and on throughout late 2015 I have been battling strange or random medical issues. Severe vertigo. Bad allergies. Headaches. This prompted a MRI and CAT scan of the brain that both came back negative but my random issues persisted. I was finally given a full body MRI that showed some potential question hot spots in my spine, and then a PET scan that confirmed their fears. In January 2016 I was given a MRI guided biopsy where they confirmed my cancer has returned and spread to my sacrum area. Of course the news was devastating. 2 weeks ago I started my treatments which began with a 3.75mg Lupron shot that I will receive monthly, and then on February 8 I begin Ibrance and Letrosole. My biggest challenge and concern is everything I find is based on women with breast cancer when I research Ibrance and Letrosole and when I research Lupron everything is on prostate cancer.
I was finally able to locate a male breast cancer specialist at Dana-Farber up in Boston a couple weeks ago. I have an appointment with him on March 2, 2016. If anyone has any male support groups, feeds, etc. please feel free to refer me as appropriate. I will keep you updated on my appointment results.
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I'm so sorry for all you are going through Ronald.
As you will see I am not Stage IV (thank God) but I just wanted to reply and give you a cyber hug. What a terribly isolating cancer you have - not to be able to research this happening in men must be terrible. I can only imagine if somehow women could get testicular cancer or something like that, then we would know your isolation.
I know there are many excellent cancer specialists out there and hopefully you have found one in Boston who will be able to give you the answers you so desperately need. I also hope you have a good support system, family, etc. and I know you will get good support here on these threads too.
You should search through some of the Stage IV threads and re-post there, some others who are going through similar to you may see your posts and reply.
As the Moderators started this thread, I hope someone will be along very shortly to give you some advice.
Meantime, I am hoping for the very best of treatment for you and a long and as painfree and symptom free life as you can possibly have.
(((((((hugs))))))
GP
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Dear Ronald, We are so sorry to hear of your stage 4 breast cancer and we are so glad that you chose to share your story here. You also may want to visit the Male Breast Cancer Forum where you might find additional information and others to connect with. Stay connected here. The Mods
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Hi Ronald, I'm so sorry to hear of your recent diagnosis. I know on the bone mets thread there is a woman who posts questions for her brother. Maybe you could start a stage iv thread for men with mets. There is also a facebook page The Closed Metastatic (Advanced) Breast Cancer Group. I saw mention of a couple men. You could redirect them to your BC.org thread so things are more private. Just a few thoughts. I'm really sorry. I can't imagine how hard this is for you. XO Dana
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There is no cure for cancer. Any of us can hope for NED no matter the stage.
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Ronald, please join us on the thread "Ibrance 2015". (It continues to 2016.) Most of us are on letrozole with it. I'm so glad you found a specialist in male bc. I can relate a bit to your frustration, as ILC is a way understudied type of bc. You are most welcome here. We have more in common than not, dealing with stage iv. Oh, one suggestion for finding an in-person support group. You might be able to find a general stage iv group for all cancer types that has more men in it.
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Ronald,
Pony has a great suggestion. My cancer support group in Ithaca, NY, isn't large enough to have a separate metastatic breast cancer group, which probably wouldn't be a good fit for you, anyhow. Instead, there is a men's breakfast group, women's noon and evening groups, and a group for those "living with cancer as a chronic disease." I attend that group, which meets twice a month for lunch and is led by the director of the resource center, a really great guy who is a male breast cancer survivor! I hope you find the support you need.
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Hi Elaine,
You've already been through so much in such a short amount of time.
I've heard of the Gerson approach, but didn't feel it was right for me. Yet, I've incorporated whole foods and stopped using chemicals on my body, in my food and around my home (don't forget to change to unscented laundry products and try to wear natural, not petroleum-based, fibers).
I love what you wrote, "My life is so changed from being so active to being comforting to my body and allow it to do it's thing while resting throughout the day. I have many days of feeling good, so I take whatever the day brings and go forward!"
Elaine, I wish you health and well being. And continued attunement to your body's needs by heeding your intuitive knowing of what's best for you all along your way.
warmest wishes, Stephanie
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Ronald, your story of late diagnosis is common for men who get breast cancer, but you'll find most support on the BCO threads that match your diagnosis rather than your gender. I've discovered lots of info and help is available as you go through the various stages of your treatment. There is a site for guys with BC and you can check it out HERE.
I have a male friend who has progressed to Stage IV and he is doing well two years on now. Keep us posted on your progress through the treatments.
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Hello,
I am new to this board but of course, not new to BC.
I was originally diagnosed with ER+ breast cancer in my left breast. This was at the end of 2012. I had a lumpectomy went through chemo and then followed that up with a bilateral mastectomy in June of 2013.
Two months ago, I started experiencing pain in my torso area - the pain moving daily from my chest area to my lower back, to my right lower front, etc. I spoke with my oncologist but I do not think she was worried about it. Chest x-ray showed nothing so she sent me home with instruction to take otc pain meds with a follow up status check with her in a couple of weeks. Pain seemed to be decreasing so all was good. The following week, the pain came back but it was much sharper pain and unbearable.
One CT scan later and we realized that my cancer might have metastasized to my bones. Mostly spine but also my ribs and I now had 2 cracked ribs - tumors had weakened by ribs to the point of them cracking - so that explained the pain!
More tests and a biopsy later, I have a final dx that my ER+ cancer has metastasized,
This dx has really taken me by surprise. I was so aggressive in my original treatment plan, I really was confident that I would be NED for years.
I have started treatment - Faslodex and Ibrance and while I am not happy to be in treatment again, knowing what I am up against and having a plan to defeat this crap feels pretty good!
I look forward to spending more time on this board and getting to know all of you.
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knitlady, we are so sorry to hear of such unwelcome news... and we are so glad that you chose to share your story here.
We hope treatment works well for you. You know you have the supportt of this awesome community, so please let us know if there is something we can do for you.
Best wishes,
The Mods
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Your story is same as my wife as well and she progressed to multiple bone mets after 2 years of NED in Feb 2016. Hang in there and lets pray for each other. She has been prescribed Ibrance + Letrozole.
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In 2011 was diagnosed with stage 4 breast cancer, not surprised, it's in my family. What was surprising was how I found it. I was never very good at self exam, so for a supplementary check I decided to stand in front of the mirror after my shower and look at them, did it for months and noticed 1 day left breast was a tiny bit off centre. Looked for a few more days-same thing-ugh! (Still never felt any lump) Went to the doc, sure enough ther was a lump- BUT, it was on the underside very close to my chest wall!! Just big enough to to push the breast a little askew. wow wow wow! I tell women all the time to supplement their self exam, with just looking at breasts in the mirror, you never know. I had lumpectomy, chemo, radiation and all was good till 2012 when it metastasized to my liver -1 tiny spot, had it removed with laser and since 2012 liver is good, whew!!! But, and luckily, from all the ct's and mri's to keep tabs on my liver, they found it has now metastasized with tiny spots on my hip bones. Was on letrazole for the last couple of years, but onc thinks that the treatment of the combination of aromasin and afinator is tailor made for me and I start that next week-hopeful and anxious at the same time. Here..we..go..
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tsu, thanks for sharing. Did you talk to your doctor about Ibrance (CDK4/6 Inhibitor) + Letrozole (aromasin inhibitor) vs. afinator (mTOR) inhibitor + Letrozole ? I would like to very much how your oncologist made the choice that he / she made. Not arguing against it but just trying to understand in context of the decision my wife's doctor made for her (Ibrance + Letrozole).
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Was on letrozole for 3 years and onc thinks it was not effective anymorea. What I was told was that the combination of afinator/aromasin has been proven effective for post menopausal patients with HR+ breast cancer that has metastasized to bones/liver. After she explained it to me I went and saw my family doc for an opinion and he said the same thing-I sometimes check with my him for a second opinion, and he is all for it too. I hope that clears it up a bit. Also hoping your wife is feeling not too bad. And what a great husband for posting, mine doesn't know one treatment from the next-relying on myself to stay on top of it
Lots of luck
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tsu, we welcome you here and hope that this amazing community of individuals will help support you along the way. Sorry for what you are going through, but know that you are not alone !
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tsu, just wondering, how was it that they found the original spot on your liver? My MO doesn't do any kind of blood test, just says we test only if I have symptoms which makes me a bit nervous. I found mine by looking in the mirror as well, was blow drying my hair without a shirt on and found dimpling. I never had a lump, just a thickness tha had been there for years but had yearly mammograms that were negative so I thought I was good. I had a negative mammogram just 5 months earlier, ended up in 10 lymph nodes. I see that some women have routine TM blood work but my MO won't do it, trying to decide if I should switch to one that will. Hope your new treatments get you to NED for a long long time.
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Unfortunately this is now the protocol. Im being treated at a major university hospital in NYC and I was told the same thing! Its really mind boggling. Im stage one and was told until I have symptoms of stage 4 there is no screening. We have a long way to go in breast cancer research.....
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I had yearly mammograms. June 2015 mammogram lead to a ultrasound Mri and biopsy of breast. Had a bmx with one positive lymph node (macromet). I was graded 2b low onco score of 11, low mitotic rate. No chemo went on hormonal therapy. I kept complaining of low back pain which lead to a cat scan identifying a gall bladder issue but also identified a spinal lesion on t2 which was biopsied and confirmed mets to spine. I had no symptoms from that spinal met. Oncologist said it was most likely there all along. So in 5 months time June to November I jumped to stage 4 but was actually Denovo from jump.
Mary Anne
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