Would you share your Stage IV story with us?
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Beautiful pics, fitztwins. Wow your boys look like you too
8 years stage IV is very encouraging. Here's to many more to see your boys into adulthood.
I was diagnosed stage IV 11 years after my original diagnosis. My kids were 6 & 8 when I was 'early stage', they are 18 & just turned 21 now! I'm hoping to see them settled into good jobs and long term relationships before I have to leave!
Like you I had groin pain (for a long time) before anything showed on scans- although a 'bone island' was diagnosed (in my spine) on a bone scan 3 years before my official stage IV diagnosis... Surprise, surprise I have a bone met in that exact place amongst others, including pelvis. (I also have lung mets, & kind of knew things were not right for a while before it was official).
I'm having a chemo break right now before I start a new one in August. Hoping I don't run thru the available treatments too quickly (we don't have as many here in NZ)
It's so nice to 'meet' and compare notes with all the fantastic people here.
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I was like Fitz in that something suddenly just did not look right. Last July I was 6 months late for my mammo so went in and bam, it was BC. Stage IV ILC gone to my liver, right out of the gate. Talk about shock and trauma. We were just getting into the golden zone, kids all raised and out of college, everyone working, we had paid off most of our debt....I know I am luckier than a lot of people, I can still work and travel and get around with relatively little problems. But I am still having some pretty hard times with the emotional piece. I have soooo much left on my list of life, I just cannot accept that it could end this soon. I am trying to stay busy and do things I love , but sometimes it is all too much.
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Hello to all,
I have been a "lurker" for a while but finally decided to send my very first post to tell my history.
I was initially diagnosed with Stage IIB breast cancer after my husband found a lump on my left breast. I was 37 years old and at the time we were considering the idea to have a baby after almost 5 years of a very happy marriage.
I was not worried when we found the lump because there is no history of breast cancer in my family and I was very diligent with my annual check-ups. I even had two mammograms before the age of 37 because I have breast implants. Coincidentaly, my sister's mamogram showed she had microcalcifications so we both were going thru more testing to get to the bottom of it. She was so upset thinking she was going to be diagnosed with BC, I was not.
Thankfully she was clear but sadly I was not. A side note: the mammogram I had while investigating the lump came back negative and the sonogram came back inconclusive although my lump was actually 4.7 cm.. Quite scary! The original breast surgeon told me I could forget about the lump or have it biopsied because at the time the imaging did not show cancer. I chose to have a biopsy and it confirmed cancer.
Long story short, I changed doctors and decided to seek treatment at Johns Hopkins. I wanted to do breast preservation so we did chemo first to reduce the tumor. After the second chemo the lump had dissapeared to the touch and I was hoping to get a complete pathological response. Then I had a lumpectomy but the size of the tumor was pretty much the same in terms of the radius where cancer cells were found. I imagine the tumor was like a piece of swiss cheese. Since I had positive lymph nodes, I was terrified that the cells may have gone outside to other parts of the body but my doctors were very optimistic about the success of the treatment.
I finished radiation and started on Tamoxifen. As of April 2015 all the scans were clear so we started thinking again about taking a chance and stopping the treatment to try to have a baby (there is a study going on to determine if it is safe to stop treatment to have a baby and one of the oncologists was very excited that I could be willing to participate). However, after a lot of consideration we decided not to stop the treatment. Little did we know that the next MRI (July 2015) would show that I was Stage IV.
If I told you what it took to get a final diagnosis, maybe you would not believe it... Or maybe some of you have gone thru the same struggle. Originally the doctors thought I have mets on my pleura but after two painful biopsies they could not confirm it, in fact the last one came back negative. Then an abnormality showed on my lower spine (L4) but because it is bone, it was decided not to do a biopsy but I was diagnosed anyway.
It is such a devastating diagnosis not just for me but for my loving husband and for my entire family. I honestly thought I had months to live. It has been 10 months now since the MRI that triggered the chain of events that lead to the diagnosis, my MO says I am "buying a lot of time" so hopefully I will be able to blog about my experience for many more years.
So far, I am responding well to the treatment. My tumor markers are lower every month and the lastest PET showed a decrease in metabolic activity for the areas suspicious for metastatic disease.
I want to learn from all of you regarding how you have been able to cope and how to keep a positive outlook despite the notion of having cancer that will never be cured.
Thanks to all my sisters for listening.
PS. My apologies for the long blog. I anticipate the next ones won't be as long
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Thank you so much Bebecita for sharing your story here with you, you are such an inspiration to us all.
If you had a photo to add with your story that would also be amazing!
Sending our love to you,
The Mods.
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Hi, I"m new to the forum. I joined today but have been reading for a while. I am 52 years old. I was first diagnosed this past January with IDC and what I thought was stage llB. Two weeks after my mastectomy I coughed and felt a pop in my left side right at the edge of my rib. It was very painful but I put it off as a pulled muscle until my Dr.visit at the end of the week which I was going to find out my chemo and radiation dates.When I told my oncologist about the pain in my side I was sent for a bone scan,ct scan and mri. The following week I went back for results and was devastated to find out my cancer metastasized to my spine, left rib, and left hip /pelvic area and spots to numerous to count. Chemo and radiation was cancelled and I was put on arimidex and monthly zometa.I think I cried the entire month of April. I am now on depression meds which works wonders because I was so miserable thinking about not being here to see my grandchildren get married and maybe see a few great grandchildren.I pray that I do but it's just so hard not knowing. I'm so glad I found you guys because you all seem so nice and very supportive. I hope I will be around for a very long time and get to know you all and learn about this ugly disease. It's going to be nice to talk to people that understand how I feel because you are going through the same as me.
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Hi Tee! Welcome to Breastcancer.org. And we're also very glad that you've found us, and hope we can all help you deal with the ups and downs that come with this desease. Come and vent anytime you need, we're here for you!
PD: Would you send us a photo to add with your story? It can be a picture of you, or something that represents you.
Thanks!
The Mods
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Hi. I was diagnosed in March 2014 with stage IIIA bc. Had a bilateral mx and reconstruction. Did eight rounds of chemo, 5 1/2 weeks of radiation and one year of herceptin which I finished Sept. 2015. Back in May, 2015 I started having pain in my rib area, actually thought I somehow broke a rib. Xrays were done and I was told it was pain from the reconstruction. After continuing to complain of pain for months I had a bonescan which showed normal. Finally in March they decided to do a pet scan which showed a large mass in my lung and growing into my ribs and chest wall. They said they missed it in the xray and assumed the pain was due to surgery. I have changed oncologists and they put me on xeloda, perjeta and herceptin. Ct scan last weeks shows the tumor has grown and I have numerous new nodules. Report says it is destroying my ribs and its unbelievably painful. They will start abraxa next week and hopefully that will help. Im also waiting for foundation one testing to come back. Im very scared. I get out of breath easily now and feel like theres something in the middle of my chest. Ct scan Monday of pelvis and abdomen and the Monday after will be bonescan. I dont even really want to know anymore. Seems like all bad news.
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Hi Momoo, I'm wondering if they did a biopsy on your lung tumor...Also you might want to ask about treatments on the lung mets thread. I'm sure the women there would love to help you. I'm sorry that you find yourself here. Hopefully your Drs. will be able to find a treatment to make you more comfortable and shrink your tumor.
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Hi txmom. They did do a biopsy. It was the same as the first one, er and pr - and her 2+. But they dont know why it didnt respond to herceptin. It just keeps growing.
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Momoo -
I am very interested in what you learn from foundation one. The test is not indicated for stage IV cancer. I assumed that was because the test does provide a lot of actionable information for breast cancers. I am interested to hear that you are having the test done. Why did you choose Foundation One over the other options?
>Z<
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I went out to the Roswell Park Cancer Center in Buffalo which is about five hours away from me. The dr there said he didnt understand why I had no response to Herceptin and he wanted to do Foundation One testing to see what is driving the cancer so he can come up with other treatment options for me. They are calling my cancer "rare" now which i dont understand. The results havent come back yet but I will let you know when I hear from them. Apparently it took some time to get my biopsy samples out of storage.
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Hello all
New to this site but not new to cancer lol. First diagnosed in 2009 with stage 2 BC. Had chemo and double mastectomy with reconstruction. I also had my ovaries removed as preventative surgery because I am BRCA 2 positive. Was put on Tamaxafin and then Armidex after ovaries were removed.I started having headaches in January 2014. I thought it was a sinus infection lol. No such luck. A MRI showed a tumor that I got removed. It was tested and proven to be breast cancer. CT scan showed more progression in my sternum which is when I got my stage 4 MBC diagnosis. Since then I have 2 clinical trials, 2 Gamma Knifes and 1 round of Ibrance under my belt. I currently have 9 brain lesions and cancer in Sternum, hip and spine. I am getting Gamma Knife on Wednesday and starting another Chemo called Halaven on Thursday. My Oncologist is searching for an immunetherapy Clinical Trial for me to go on.
Nice to meet all of you!
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Jaci45, big hugs to you, and happy you found us! Please keep us posted, and let us know how things go on Wednesday and Thursday!!
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Jaci - I am sorry you are hear but anxious to hear about your experience on the immunotherapy trial. If that goes forward, you might consider starting a thread to let us know what the trial is and what your experience is.
If you fill out your diagnosis and treatment information in your profile AND make it public, it is a shorthand way of letting people like you know you are here.
There are specific threads for brain mets, bone mets and ibrance. Probably threads for people on Halaven. The specific threads are where people get into the details of their experience. You will find a lot of hope and support.
>Z<
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My name is Judy. 11 years ago, on a routine mammogram, it was discovered I had cancer in my right breast. My surgeon found 3 tumors and the margins weren't clean, even though I was Stage1. So I had chemo. After the chemo was done, I had an MRI of the breasts and it was discovered I had cancer in the left breast. Still Stage1. I opted for a mastectomy with immediate reconstruction. This April, I was diagnosed with a recurrence. Stage 4 with mets to the bone. No organs involved and a brain MRI was okay. I am on letrozole and Ibrance. I'm having some bone pain, due to the medication. I'm trying to adjust to my new "normal." My husband and I are traveling and I try to spend more time with my kids and 5 grandchildren.
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Hi Judy, welcome to Breastcancer.org. We're sorry for your recurrence, but glad you've found this wonderful community!
Thank you for sharing your story here. If you could send us a picture of yourself or something that represents you, that would be great!
Let us know how you're doing, thinking of you!
The Mods
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Hello. My name is Dee and honestly, I'm not really sure exact dates of dxs, surgeries, chemo etc. I was dxd Stage III C in 2009, and ended treatment in 2010. Two months later I landed my dream job as an infants teacher in the childcare center of a major healthcare provider. After a while, my back started hurting which I put down to all of the bending and lifting required by my job. I was also having trouble with my right knee which my local PA dxd as bursitis and treated it as such. There came a time in 2013 when the pain in my back was making it hard to move so I went to the ER. Both times, the doctors said I'd strained a muscle. Finally I saw a doctor who checked my medical history. Following the usual tests and biopsy he confirmed metastasis to T11. The picture my surgeon took of the X-Ray following vertebroplasty showed more cement than bone. I had to quit my job. From T11, my cancer spread to my liver, more vertebrae, pelvis and hip. In early 2015, the pain in my knee became even more unbearable. Scans revealed that the distal end of my right femur was cancerous. So, back to surgery I went to have it removed/amputated (the end of my femur, not my leg). My chart now states that all PET scans are to cover head to toes instead of from eyes to thighs. I'm not sure of the specific name of the appliance used to replace the end of my femur, but the x-rays of it are pretty cool 
. I'm on a lowish dose of morphine for pain management..not that I have any pain, right? I spend a lot of time just resting. I can't stand to sit or stand for any length of time; unloading the dishwasher makes my back very angry. Personal..I have 5 children ranging in age from 18 - 34, and two beautiful little granddaughters (Nora is due in just a few weeks). My youngest is off to college in the fall leaving two of her siblings at home with us. Both are on the autism spectrum; one also has a lot of other issues..anxiety, PTSD, Bi-Polar, depression etc. My son has a part time job. And..hubby had to quit working in 2014 due to panic attacks/anxiety and we finally learned..autism! I live in a small town on the western shore of Lake Superior. It's beautiful here. Peaceful, woods on one side of Town, the Lake on the other.
I collect Happy Thoughts, inspirational quotes and verses, and memories. My children and granddaughter (s) are my greatest teachers. I believe in living with the "4 Fs"..Faith, Family, Friends and Fun! Blessings on you all!! ((((((Huggelies)))))
PS Can anyone explain..I was originally dxd ER+/PR+, Her2- but now I'm ER+/PR-, Her2-. Thank you!
Here's a larger pic of my avatar. I'm in the middle wearing black. Hubby is behind me, to the left of me is daughter with autism etc., front row is my son-in-law, granddaughter, and my other two daughters.
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Hello. My name is Dee and honestly, I'm not really sure exact dates of dxs, surgeries, chemo etc. I was dxd Stage III C in 2009, and ended treatment in 2010. Two months later I landed my dream job as an infants teacher in the childcare center of a major healthcare provider. After a while, my back started hurting which I put down to all of the bending and lifting required by my job. I was also having trouble with my right knee which my local PA dxd as bursitis and treated it as such. There came a time in 2013 when the pain in my back was making it hard to move so I went to the ER. Both times, the doctors said I'd strained a muscle. Finally I saw a doctor who checked my medical history. Following the usual tests and biopsy he confirmed metastasis to T11. The picture my surgeon took of the X-Ray following vertebroplasty showed more cement than bone. I had to quit my job. From T11, my cancer spread to my liver, more vertebrae, pelvis and hip. In early 2015, the pain in my knee became even more unbearable. Scans revealed that the distal end of my right femur was cancerous. So, back to surgery I went to have it removed/amputated (the end of my femur, not my leg). My chart now states that all PET scans are to cover head to toes instead of from eyes to thighs. I'm not sure of the specific name of the appliance used to replace the end of my femur, but the x-rays of it are pretty cool . I'm on a lowish dose of morphine for pain management..not that I have any pain, right? I spend a lot of time just resting. I can't stand to sit or stand for any length of time; unloading the dishwasher makes my back very angry.
Personal..I have 5 children ranging in age from 18 - 34, and two beautiful little granddaughters (Nora is due in just a few weeks). My youngest is off to college in the fall leaving two of her siblings at home with us. Both are on the autism spectrum; one also has a lot of other issues..anxiety, PTSD, Bi-Polar, depression etc. My son has a part time job. And..hubby had to quit working in 2014 due to panic attacks/anxiety and we finally learned..autism! I live in a small town on the western shore of Lake Superior. It's beautiful here. Peaceful, woods on one side of Town, the Lake on the other.
I collect Happy Thoughts, inspirational quotes and verses, and memories. My children and granddaughter (s) are my greatest teachers. I believe in living with the "4 Fs"..Faith, Family, Friends and Fun! Blessings on you all!! ((((((Huggelies)))))
PS Can anyone explain..I was originally dxd ER+/PR+, Her2- but now I'm ER+/PR-, Her2-. Thank you!
Here's a larger pic of my avatar. I'm in the middle wearing black. Hubby is behind me, to the left of me is daughter with autism etc., front row is my son-in-law, granddaughter, and my other two daughters.
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Momooo - Your cancer is rare because it is not responding to Herceptin. Do you know if you had an ICH or a FISH test? FISH is much more sensitive, and will give a better indicator of just how HER2+ you are. Generally speaking, if your HER2/CEP17 ratio is greater than 3, you should do well on Herceptin. The current first-line therapy for Stage IV HER2+ is Taxotere, Herceptin and Perjeta. I see you received ACT when you were first diagnosed - did they throw Herceptin into the mix? Did they offer to put you on THP when you were diagnosed Stage IV? I would get a second opinion. Best of luck.
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It is not unusual for mets to change profiles...say from triple negative to positive and visa versa....that is why mets have to be biopsied to find this out so treatment will be proper. (((hugs to all)))))
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Hi to all our wonderful members!
Just a gentle reminder that this forum is for our Stage IV members only so we do ask that you respect the reserved nature of this forum.
If you have not been diagnosed but have questions about Stage IV Breast Cancer, you can certainly post in the following threads:
If you are not Stage IV but have questions you may post here'
Not diagnosed with a Recurrence or Metastases but concerned
If you are a caregiver or family member with a stage IV diagnosis, there is also a forum entitled: For family and Caregiver's with Stage IV.
Hugs to all,
The Mods.
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At the age of 33 I found a lump in right breast Feb 2015 I was referred to specialists as cancer was suspected. Ultrasound scan did not reveal any abnormalities, a core biopsy that was undertaken was not done anywhere near the lump/dent because apparently the specialist doctor could not identify a lump/dent even though myself and my doctor could.
The breast ultrasound did not reveal a mass so no further investigations were performed and I got the all clear.
In May 2015 my nipple on right breast was limp/deformed again my doctor sent me back to the 'specialists' I was told that the biopsy had caused the 'bruising' of my breast again I was told no further tests were needed.
In November 2015 the lump/dent much bigger back to the specialists again more tests done including the most horrendous biopsy experience and diagnosed with multifocal grade 2 and grade 3 invasive ductal carcinoma ER+ve and PR +ve HER2- also involved axillary lymph nodes. 5/14 with extra capsular spread.
Straight off the bat 6 months of chemotherapy followed by mastectomy of right breast and axillary node clearance.
During February 2016 hospital admission of sepsis a ct scan was done.
Then 3 months later I am told I have bone mets that have healed so a response to chemo never mind the fact 3 months have past before telling me.
The oncologist told me its a poor prognosis with the spread of mets
Tamoxifen started 10 days after surgery.
Zoladex monthly.
I have been positive of mind throughout the above, I have dark days but it is what it is.
The mind boggles at what I have been through in the last year.
A year ago Independence day I got married the most wonderful day of my life 3 months later all the above followed.
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Dear Cosmogirl, Thank you for sharing this. We know that many of our members truly benefit from shared stories and shared experiences. What an ordeal you have been through! We hope that you will continue to stay connected here with others who can appreciate your story, and offer support. The Mods
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Hi gals and gents,
It all started with big axillary lymph nodes that I ignored for a year even though I work in medicine. After a year or so, I noticed two small lumps at six o'clock in the left breast. I was very fatigued, working full time with a long commute in SoCal that wiped me out and sleeping the minute I got home. At some point it took me three evenings to change the sheets on my bed. Finally I went to see my primary who ordered up a mammogram. The mammogram generated suspicious shadows which led to five biopsies of the left breast and left arm pit lymph nodes. Subsequently ductal cancer was diagnosed, HR2, progesterone and estrogen receptor positive. The oncologist ordered up a PET scan and a CT scan. These revealed stage IV mets---tumors in the chest wall, lungs, whole spine, pelvis, kidneys and right rib cage. The fatigue was crushing at that point and i had to take naps in my office during the day. Perjecta, taxotere, herceptin, zometa ensued..and neupogen for five days after each chemo which was scheduled every three weeks. Hair loss, no taste buds, and fatigue continued to be my main symptoms along with bloody diarrhea several times a day and night which was controlled eventually with Imodium.
Slowly, my energy returned. The breast and axillary tumors were no longer were palpable after six months of aggressive treatment. Seven months into treatment a MUGA scan of the heart revealed sub clinical chronic heart failure along with very high blood pressure readings.
We halted the perjecta and taxotere, maintained the herceptin eight months after diagnosis and added Femara. Slowly the hair returned... pretty silver punk and best of all the taste buds pretty made a magnificent appearance... yeah!! Food glorious food. I think I had lost about 12 pounds in weight over the cause of the year. Three months later, my energy has returned i full force. Enjoyed a three week trip to south east asia -- five countries. Just returned from a full working week in NYC--morning noon and evening. Have picked up running. Go to the gym each morning at 5:30 a.m. before work and am planning to run a five K in Washington DC in November during a scientific meeting that I will be attending.
LIfe is good. Am feeling terrific. I think am one of those lucky super responders....
(A recent PET showed tumors greatly diminished. A small stain showed up on the right upper lobe of the lung. CT has been ordered up. Will keep you fine folks current.)
Giant cyber hugs to all who have been able to make it thus far.... good for us!!!! xoxoxoxo
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Hi all!
Stage iv breast cancer with liver and bone mets starting in 2011. Had lumpectomy, chemo, radiation, liver ablation and tamoxifin after that. Everything was staying the course until about 6 months ago. Ct showed a couple more spots on bones.Was put on Affinitor and Exemestane for 6 months. My last ct scan results on July 12,2016 showed bone mets a little larger and 1 more spot on liver. Uggggh!!!! On July 15, 2016 had my second port a cath put in and on July 20 had my first Paclitaxol chemo. The plan is Paclitaxol 1/week for 3 weeks-then 1 week off. The next day..... Excruciating bone pain that kept me awake all night but gone today, whew! I know that exercise will help that, but so tired from being wide awake 2 nights in a row, and the heat wave we are having in eastern Ontario right now is keeping me inside. Anybody else on Paclitaxol having extreme bone pain? Does it get better? Not really any other s/e - yet.
Interested to read about other side effects that might occur in the future. Thanks and be kind to yourselves0 -
Tsu -
There are people on Taxol on both the very active Bone Mets thread and the very active Liver Mets thread. There is a less active Taxol Thread as well. I encourage you to post there as I know people have a lot of experience with your treatment protocols.
I am not taxol but I will say that when I am not sleeping well the effect on my QOL on top of the usual side effects is devastating. Good job paying attention to the side effects. We have to be well to get well. Keeping pushing until you are sleeping well and the pain is gone.
>Z<
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Not sure how to start. But my name is Ileana and I am 25 years old. Two years ago I was diagnosed with stage 0 breast cancer. I decided to have a bilateral mastectomy especially because I was BRCA 2+. They told me I was fine that my breast cancer was all gone. I continued to live my life. I was in school and I have a wonderful boyfriend. I worked out and hung out with friends. I started to have a lot of back pain and pain in my hip. I worked out and lifted heavy weights so I thought I pulled something. Then an MRI of my lumbar revealed spots in my liver and inflammation in my bones. On June 6, 2016 I was officially diagnosed with stage 4 breast cancer. Bone Mets and liver mets. I am still in shock hoping that I wake up from this horrible nightmare. I started chemo (taxotere,herceptin,perjeta (sp)) on July 8. My first round wasn't too bad. But my second one had been horrible. I'm scared of living like this and I don't know what to do. I haven't been able to return to work because of the side effects. This is very hard
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Ileana-
We are so sorry you find yourself here, but we're very glad you've joined us. This community is very supportive and will be here for you as you begin down this road. We know how hard this is, and how scary, and we want you to know that you are not alone. Please take a moment to read through our Stage 4 forums; there's a lot of great info there, and our stage 4 members in particular are very knowledgeable and welcoming, and can help you through this.
Please let us know if we can be of any assistance.
The Mods
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hi everyone. Zarovka started a new thread last month in the stage 4 forums titled how many are we 2016. The thread was started last month. Z is attempting to count the number of metsters posting or lurking on the stage 4 forums. We are both thinking that people might have missed the thread responding only to threads that are marked as favorites. If you don't mind bumping over to that thread if you have not already it would be appreciated
Thanks so much
Mary Anne
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Only25yo: I can't imagine what you are going through because I am/was so much older when diagnosed with mets. My heart hurts for you, I just can't quite put myself in your place. There is a thread for younger women in the stage IV forums, perhaps you can find some strength and support there.
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