Would you share your Stage IV story with us?
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mab60 This infuriates me! I don't understand why this wasn't found on initial diagnosis. I don't understand why we are not screened for mets initially. Just doesn't make sense to me! Anyone?
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dtad spine met not found initially because there was no scan to that area. Ultrasound Mri and biopsy after mammogram were of breast only. Low mitotic rate minimal lymph node involvement on one node and low onco score obviously did not warrant further testing with current protocol. I am at a very large cancer center
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Hi All, first of all, I am Canadian and feel bad to say that might be the difference. When my biopsy showed cancer-and lymph nodes were positive,I was very quickly sent for a battery of tests: ct, ultrasound, bone scan, mri, mugga scan, chest X-ray, and all was good. After chemo, surgery and radiation (about 6 months from diagnosis) I was sent for ct and mri-both showed "something" very small on liver-week later had ultrasound guided biopsy and 2weeks after that had ultrasound guided ablation of the spot. After Mir showed spot was burned, I went every 3 months after for mri's -still good as of 3 weeks. The doc that did ablation said it was smallest spot he ever treated. I feel very fortunate that I didn't have to deal with insurance at all. I remember all those 3 hrs in the chemo chair feeling very sad for people that had to deal with cancer as well as insurance companies. I felt very cared for right off the bat. Take care, all of you
❤️💛💚💙
Tsu
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Mab60 I understand that it wasn't done because thats the current protocol but.... IMO its just not right!
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When my wife's BC was detected through mammogram followed by ultrasound, they immediately did biopsy of the suspected area in the breast. As soon as biopsy confirmed cancer, she was sent to do CT scan, Bone Scan and sentinel lymph node biopsy. All of that confirmed that the disease has regional mets (lymph nodes) but no distant mets. Brain was not checked with MRI.
However they said they will only repeat the scans if she complains of any symptom, not otherwise or not periodic. Two years later when she complained of back pain for 6 + months they finally did a CT to find out extensive mets on spine and pelvis (bone only). She visits a major cancer institute in the US. Again brain MRI was not done as they said, they do not do brain without symptoms. We visited another famous cancer institute for 2nd opinion and they confirmed the same protocol.
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I was told that you could have bone Mets and not have pain at all - shouldn't be waiting for symptoms. If they already know you are stage 4 then there should be some kind of periodic testing for sure.
Tsu
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I was Dx De Novo after a clear mammo the year before. (ILC here) As soon as they biopsied the breast and it was positive, they did the nodes, positive. Then all the other stuff began. Had a PET scan, bone scan, MRI to the brain. Mets in liver....Had a live biopsy to check HER status. I now have a PET every 3 months or so until I am stable for probably 6. Then it will probably move to every 6 months. Insurance pays. the only thing I have not had that I wonder about is onco score? My TM's are checked once a month.
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I was just told that I have stage 4 Mastectic Cancer, I initially had breast cancer in 2013, I underwent a double Masectomy with a tram flap procedure. I had Chemo from June-December 2013 & Radiation in 2014 going for 6 weeks. I was just approaching my 3rd year of being cancer free, I was so excited. I went to my Onocologist in February, and she said "Let's do a cat scan" so...I did. Results came back 3 days latter showing I have enlarged lymph node with a mass, my Onocologist, then sent me to have a bronoscopy to have the mass biopsied, it came back showing that I had cancer. I then went to my Onocoligist, she then wanted for me to have a Pet scan. This is also the point in which I find out that I am Type 2 Diabetic, double blow...So until I got my sugar down below 200, I wouldn't be able to have the pet scan. So now I have to wait another week or so. Worried about my cancer & Diabetes & where else in my body my cancer has spread. I finally got it below 200, It went down to 114...My primary put me on medicine to help lower my sugar. It did, now I am ready for the pet scan. Monday couldn't come fast enough for me. Wednesday My Onocologist called me into her office to tell me the results of my pet scan, my husband & I were so worried. My Onocoligist walks in and says immediately, "You have Mastectic Breast Cancer"., I was floored, what do you mean? She said " you have the same kind of cancer you had 3 years ago, we must have missed a lymphnode, it has spread into my chest, lungs, abdominal walls, pancreas, & liver...You have stage 4 Cancer". It is uncurable, I can give you some medication if you would like, one is for Quality of life or you take take this other one which would give you Quantity. My husband & I were shell shocked. I asked why was I taking that pill then for the last 3 years, the one you said would keep the cancer at Bay...Anastrozole 1mg? She the. Replied " It must have not been strong enough for you". Needless to say, I fired her...I have my 1st appointment with a new Onocoligist at the Karmanos Institute, next Thursday the 7th of April. I am hoping that he can give me some answers, if not, I don't know who to turn to, I feel so lost & alone. If any of you can give me a light at the end of this tunnel, It would be so ever greatly appreciated
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Don't give up, new Onc might have totally different idea on a better treatment for you. It sucks, I know... I had breast, metastasised to liver and bones. I had ablation on the liver 2 years ago and every ct since its been good. For the bones, (new) I am taking aromasin and afinator. The one thing, I think is to keep on them about the testing and ct scans so there are no more surprises. I have ct every 3 months-the mets on my spine are only 3 months old-they weren't there 3 months ago.they double checked with a bone scan, and sure enough that's what it was. Let the onc know you want to try everything possible. I've been stage 4 since 2011. I hope that helps a bit, just don't give in yet-there could be something out there that can slow everything down. I am no DR. But I know a few people now that are still around and still fighting, even though a couple years back they were told that not much could be done. New onc will know that you are willing to try just because you fired the first one
Good luck, and hope you have a different out come with the new dr.
💚💜❤️💛
Ps. my sister just passed away after fighting over 20 yrs of stage 4, had breast, liver, bones
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Dear JM,
What stunning news to go from everyone thinking you are cured of breast cancer to being told to choose treatment plans - quality or quantity of life. And having to deal with a new diabetes diagnosis and treatment plan in the middle of everything.
Though I have mets in many of the same places as you, they came slowly over many years.
JM, I can only guess how you are feeling - shocked by how suddenly this came on, abandoned by your onc, having to find your own way, grieving loss of your "cured" status, wondering whether your cancer grows slow or fast, confused about what your future holds and how your diagnosis and treatment will affect your loved ones.
Your news has come so suddenly and it's too early to adjust quickly.
What I might suggest is seeking the pony in the room of horse shit.
Encouraging signs: You are seeking a second opinion. You didn't mention having any symptoms or pain from the mets (though I do know that cancer in the pancreas can cause diabetes). You are strong enough to take up the necessary tasks. You have the support of your husband. And you are reaching out to us. And palliative care (not hospice care) is there to help you deal with the effects of cancer and treatment - many of us engage it at the outset of a mets diagnosis. You probably have family, friends and well wishers who can come together to support you now.
Though this is sudden and stunning news, you may find help in places you can hardly imagine now.
I encourage you to branch out in forum 8. There are separate topics for liver, lung and peritoneal (abdominal wall) mets. And some really good ones for different treatment approaches - as that clarifies for you.
JM, do lean into bco, we will respond when and how able.
Sending waves of warm healing light, Stephanie in California
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JM, What a whole bunch of stuff to quite suddenly have to deal with. I felt overwhelmed and shell shocked as well at my Dx but as things settled down and we started a treatment plan it has become somewhat easier. I applaud your courage at firing your Dr. You need someone in your corner who will treat you with compassion and optimism. I hope you will be armed with questions when interviewing a new one. I know they will have a treatment plan for you that could very well blast the crap out of those mets. There are many women here who have had extensive mets everywhere that are still getting along after a long time. As Stephanie suggested, look into the other threads here that address specific situations. I have found it a invaluable lifeline. Best wishes for you and please let us know what transpires.
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Three months after having my first baby and my second week back at work I starting having pain in my side. It didn't last very long so I ignored it. My right breast burned a little after I breast fed but I chalked that up to a clogged duct. One night after work the pain in my side was so bad I went to the ER. I thought it was a gall stone. Turns out my liver looked like Swiss cheese. I was admitted to the hospital where they did several ct scans and mris. One CT scan showed tumors in my lower spine. Two weeks before I was picking up my baby and my back seized up. I thought I had pulled a muscle but turns out it was the tumors. I had a liver biopsy which revealed the breast cancer but no one could feel it. CT scan of my chest showed a huge lymph node. It wasn't until I had the PET scan that they finally found the source. And 3 days after I was diagnosed I turned 32. 32!!!
Since I started the chemo my liver and back pain are gone. The liver pain at one point was so intense that I couldn't breathe properly. I couldn't walk or sit up. My biggest fear is the pain.
I have changed my diet and I got a personal trainer. I'm hoping this will complement the work the chemo is doing. I have to beat this for my baby girl'
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JillianClaire- I too was diagnosed with BC 3 months after having my 4th baby. Others were 8, 5, and 2 1/2 at the time.After throwing the kitchen sink at it I was diagnosed as Stage 4 two years later with brain and liver mets. Well, my little baby is 5 1/2 and I have been living NED for the better part of 3 years. I wish you all the best. May we both be able to watch our babies grow up
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JillianClaire, welcome to BC.org! We're glad you found us, though we hate that you have to be here...
We wanted to say thank you for sharing your story and for the lovely picture, you both look beautiful!!!
Best wishes. Please keep us posted on how everything is going, we're thinking of you!
The Mods
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Welcome Jillianclaire, I am so sorry you have to be here but think you will find a compassionate and understanding group. What a beautiful picture! Your baby is just precious! What a lousy thing to happen to you at such an otherwise joyful time. You may want to visit the "People with liver mets" thread to get a lot of helpful information and wonderful support. There are women there who have been doing well for years. Their experience and feedback has been an incredible lifeline for me. I am so glad to hear your treatment has already helped with the pain. Hang in there and take it one day at time! Please check in to keep us up to date on how you are doing!
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jillianclaire
I was diagnosed while still ebf my 1 year old at the time. I too had pain that I chaulked up to clogged ducts. Wasn't till I broke my collar bone that I had any clue cancer was spreading everywhere.
There are so many amazing meds out now we will have the chance to watch our babies grow up.
Wishing you all the best
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Hi All,
I am 58. 3 years ago I had IDC Stage 1 BC in my left breast. I opted for bilateral mastectomy to be sure I wouldn't be back the following year. No chemo, as I was Borderline. Although, I am Estrogen receptor positive. I had breast enhancers put in a year later. I noticed a wrinkled surface at the corner of my left breast scar after this surgery. I inquired, but was told it was likely a stitch left behind given that surface response. When I had the silicone implants put in they told me they would cut out that problem and it would extend scar a bit, but it would be fine. It came back. Plastic surgeon did liposuction to correct 4 months later. I waited for healing. Plastic Surgeon moved out of state and I moved to another state. Scar never got better, in fact, it got worse, the area hardened with streaks of pain would fly through the area. I contacted a plastic surgeon at Stanford (closest and best hospital to where I now live) and he suggested a biopsy first. Now, I find out that I am Stage IV IDC with metastases to my sternum and bones. Beyond that, the PET scan found live one lesion in my head, near my cerebellum and one on my vocal chord. 28 years ago I had surgery on my head with follow-up radical radiation and no reoccurences. These may simply be scar tissue (I pray). The vocal chord was a result of nerve damage and had had Teflon injections in the 1980s. Yet, the PET scan is showing activity. I am currently having my MRIs, both past and present, compared. Systemic treatment for the IDC is Palbociclub and Letrozole with monitoring and a monthly injection of Xgeva. I begin this coming Monday. I wondered if anyone has undergone this treatment and what their feelings were during and post treatment. Thank you very much.
LaurenG
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My path to Stage 4 had a few curveballs and some twists and turns...
In April 2014, I felt a lump in my left breast. I had had Shingles right above the lump a few weeks before and thought it might be some swelling or inflamed glands leftover from the Shingles. I decided to have it checked my PCP. She sent me for a mammogram and breast ultrasound. The mammogram didn't show anything, even though we could feel the lump, but it did show up on the ultrasound. A breast biopsy was ordered 3 days later. My surgeon told me at that time that he suspected it was cancerous and would call me to confirm once he had the path report back. I was diagnosed with IDC on Good Friday, 2014.
My surgeon immediately referred me to our cancer center and I had an appointment with my my oncologist within a week. The size of the lump was within the limits for a lumpectomy, but my onc wanted me to have a mastectomy. While I was making that decision, he ordred a battery of tests because he believed we should know if there was cancer anywhere else before proceeding with surgery. My the end of April I had had a PET and bone scan. I had a brain MRI done at the beginning of May and immediately received a callback. Something odd had shown up on the brain MRI, but they weren't sure what. My onc didn't think it was a met but was concerned that I was suffering a brain bleed. My local hospital life flighted me to a larger, urban trauma center. Once there I was evaluated by the head of their neurosurgery department and also their neuro-oncology department. Another scan was ordered. I was diagnosed as having a cavernoma. Four different doctors, 2 oncologists and 2 neuros, reviewed my films and agreed it was a cavernoma and that it had probably been there all of my life. A cavernoma is like an aneurysm, but on a vein instead of an artery. If they bleed, it's not castrophic, and therefore they are typically monitored with imaging and left alone. It was in my right temporal lobe.
I had a mastectomy performed 2 weeks later. All of my nodes were clean. I was staged as 1A. My onc ordered an Oncotype test. I was a 12. No chemo nor radiation was ordered. I started on Tamoxifen and began to get back to living my life.
In February 2015, I went to work and suffered a grand mal seizure. I was life flighted to my neurosurgeon's hospital. Thru another brain MRI it was determined that the cavernoma had bled, causing the seizure. I had a craniotomy performed 3 days later to remove the cavernoma. During the surgery it was discovered that the cavernoma was in fact a breast cancer met. It was less than 1 cm in size. The pathology of the met was identical to the original tumor in my breast. My onc and neurosurgeon speculate that it probably formed at the same time as my breast tumor and remained dormant until I began taking tamoxifen after my mastectomy. My onc theorizes that the tamoxifen "shook up" the brain met, causing the bleed that led to the seizure. A month after my crainotomy, I had GammaKnife radiation performed on the tumor bed. The high def brain MRI at the time of the GammaKnife revealed no other brain mets.My treatments since then have been hormonals only. I took tamoxifen until November 2015, but side effects caused me to stop. My onc started me on Lupron injections in January 2016.I will begin taking Arimidex soon.
My last brain MRI was in March 2016, it was clear. My last PET was in September 2015. It wa salso no evidence of disease (NED).
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Dear Lauren and Goodie, Thanks so much for your stories. We really appreciate your taking the time to share yourselves with others. We know that they will be meaningful. The Mods
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I am new to posting; have 'lurked' and gotten some much needed info and encouragement since last October.
I was first diagnosed in November 2008 and had a lumpectomy (1/09), chemo (2/09-4/09), and radiation (33 treatments 6&7/09). Sentinel node dissection; no node involvement. Clean margins. I was not given any adjuvant therapy.
Thanksgiving Day 2013 my daughter and I put the turkey in the oven and went Christmas shopping. When we returned home, I had a seizure in the driveway. It lasted just a few minutes. I took an aspirin, propped my feet up and then went to bed later that night.
The next day, my entire family loaded in our van to head into DC. I had another seizure before we got out of the driveway. My husband told our children to go back in the house and he took me to the hospital. Our local hospital did a CT scan and informed me I had a large mass in my brain. I was taken to Johns Hopkins. We had to wait 10 days to have surgery because I took an aspirin on Thanksgiving! The surgery removed 99% of the tumor, and I was home for Christmas. I had 3 days of cyberknife 6 weeks later. My MO put me on arimidex.
One year later I had one day of cyberknife for a very small piece missed on the first go-round. Eight months later I was having my second craniotomy to 'clean up'.
About a week after my second brain surgery I started having terrible pain in my sternum, left collarbone, left shoulder and shoulder blade. My MO said it didn't seem cancer-related, but he would schedule an MRI if I wanted. I did. MO called with results, saying nothing appeared on the scan, so it wasn't cancer. Three weeks later the pain was worse. I called MO office, explained who I was and that he gave me scan results and while I was certainly delighted it wasn't cancer, it was still very painful so could they suggest a doc I should see. The nurse put me on hold then came back and said "the doctor says of course there's pain, you have a lesion on your sternum." I was a million things at once -- stunned, angry, speechless, confused.... I made an appointment for the following week.
My husband and I sat in the MO's office while he told us that I had a lesion on my sternum and a few spots on my liver. Again, stunned, speechless. Was someone going to tell me this? If I hadn't called, how long would the cancer be growing before I was finally informed?!
Needless to say we fired that MO that day. I met with a new MO a week later. He said I also had cancer in my left axilla lymph node. He put me on afinitor and aromasin and scheduled me with the radiation onc the following week. One proton zap to the sternum and the pain is virtually gone.
Unfortunately, the afinitor/aromasin combo did not work for me. Bone mets basically stable, but nodules appeared under left arm and progression in liver. I am currently undergoing radiation to the left lymph node, and I just had a liver biopsy. I finish rads in 4 days and meet with the MO for the biopsy results and treatment plan in 5. My brain is currently clear.
I am frustrated and scared but try to keep a positive outlook. So many amazing new treatments. We are trying to stay away from IV chemo until absolutely necessary (although with progression in the liver, that's probably where we're headed) and trying to find a good clinical trial at Hopkins new Immunotherapy Clinic.
I know I am fortunate to have had about 2 years with very little treatment intrusion on my life, but I desperately want to get and stay stable for a very long time. I have 3 children, and I want to see their graduations (1 from high school, then all 3 from college), weddings, beginnings of careers, grandchildren.....
Thanks for letting me share and for having such invaluable information and support.
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Mom of 3, wow, what a story. Thank you for opening up to all of us here, and sharing all you have been through, and your strength.
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As with many of the ladies who have recently shared their stories, I've been following posts for quite some time. I decided that it was time to introduce myself to this incredible group of women who have helped me deal with the last few months since I reluctantly retired after 30 years as a school-based speech-language pathologist. Although the breast cancer primarily metastasized to my bones, it also caused a significant loss of my voice, which is devastating to an SLP. Laryngeal plastic surgery, along with voice therapy, helped me regain some speech, but certainly not enough to conduct any type of effective therapy sessions. In the first few weeks after retirement, I found myself withdrawing from people because I could not speak clearly enough to be understood on the phone, or even in person. I also discovered that augmentative communication systems are not nearly as effective out in the public as I had thought when I recommended them for some of my students! Things have improved, but I still spend a great deal of time at home. I discovered this forum earlier this year, and have learned much about how all of you deal so well with your individual situations. I admire your optimism, resourcefulness, humor, and spirit of camaraderie!
When I was first diagnosed in 2007, I was the fifth of seven educators in my school to have been diagnosed with breast cancer since Katrina hit the Gulf Coast in 2005. Interestingly enough, the disease seemed to target the administrative and support staff, including our principal, school secretary, both school nurses, our librarian and her assistant, a school counselor, along with me. Fortunately, no one else has been diagnosed to date; all of my peers are doing very well; and I am the only person who has since been diagnosed with any progression at all.
After a very tiny tumor (.2 centimeters) was discovered in the fall of 2007, my treatments included a lumpectomy, followed by a mastectomy due to an unclear surgical margin, and several reconstructive surgeries. No radiation or chemotherapy was recommended, and I took Femara for five years. I was seen regularly for clinical visits, as well as for mamograms, Several times, I asked my former oncologist about PET Scans and Tumor Markers, but she indicated that they weren't necessary because of my excellent prognosis (I've sense found a backbone and am much more assertive about my treatment plan). Thinking back to that time, I remember that I started having bouts of back and hip pain a few months after I stopped taking Femara. I attributed that pain to probably muscle strain due to "overdoing it" in my yard. During that same time (2013-14), I experienced chronic hoarseness (not such a great thing for an SLP) and scheduled an appointment with an ENT. He discovered a paralyzed vocal fold, and ordered a CAT Scan of the neck and upper chest area. The results showed a tumor pressing on the nerve which innervates the vocal folds, along with many other suspicious growths in the chest area. He contacted the oncologist and I was seen for a PET Scan, which showed involvement of the spine, ilium, scapula and sternum. A biopsy indicated that it was a progression of breast cancer. My husband and I immediately started searching for another cancer treatment center and were fortunate to find a wonderful facility near our home. After four chemotherapy treatments in spring 2014, a follow-up PET-CAT scan showed NEC. I listed all of the past and current treatments on my profile, so won't reiterate here. There has been some uptake in the ilium within the last few months, along with gradually rising TMs , so my oncologist has pushed my PET-CT scan up to next week. With your help, I'm prepared to deal with whatever happens!
I'm attaching a picture from my last day of work. Since then, I've tossed out all of my professional clothes and am usually totally unpresentable due to grub and grime from the yard or paint from household projects!
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Hello AngelaO! I'm browsing through the website, not sure why your post caught my attention, maybe it was the wonderful photo!
Wishing you the best with your PET scan results next week! I will say that, in my experience, TM's seem to track pretty closely to spread, but spread is just spread, it's not the end of the world! I think it's fits and starts...spreads, stops, spreads, stops, etc. So I'm totally hoping for good news on your scan but, if it's not the news you're hoping for, try not to fret too much...:) (But, if I'm reading your DX correctly, you need to get your a#! on Ibrance! Best,
LynnFish
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Hi TSU...Good for you! I admire the Canadian system, and regret the misinformation we in the US get about your healthcare system! I wish that I didn't know that my treatment is dictated by the profit motives of US insurance companies!
Feelin' the Bern!
LynnFish
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Thanks for your message, Lynnfish, and for the good wishes on the upcoming scan. You are exactly the type of person that got me hooked on this site. Many of you seem to be several steps ahead of your doctors. I also love your attitude that progression is a challenge- not a death sentence.
I struggled with trying to complete those drop-down choices when completing the profile, and never could figure out how to make "current/ongoing treatments" stick. I have been on Afinitor/Exemestane since last June, and the first few scans were great, then started to show that the cancer was returning just to the ilium. During my last visit, my oncologist talked about my going on Ibrance because he didn't think I could tolerate a higher dose of Afinitor (bad side effects just on a low dose).
Now that I have time on my hands, I've been carefully reading your and other's posts on nutrition, and the information makes so much sense! My mother-in-law, who is eighty, went on the vegan path several months ago.. She just shocked her MD with her great CBC results; and has lost a ton of weight. I also need to read more on the adverse effects of sugar and carbs. I've read some recent posts about not eating either for a couple of days before scans and blood work, but I need to go back and read some earlier posts for more information.
Thanks again!
Angela
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I am a 56 yr old female who was dx back in Oct/2001 with stage 2B infiltrating ductal carcinoma, Estrogen positive. Had a modified radical masecteomy implants put in. Was in a clinical trial for taxotere and adriamyacin.. Have been good for close to 15 yrs. Was dx with stage 4 in lungs, bones (chest and back) Feb/2016. I am to have 6 rounds of taxotere and cytoxin. Have done 2 rounds so far. Became nuetropenic after first round so took Nuelasta and the bone pain has been immense. I am new on this forum. Scared....
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Partia,
I am also new to the forum; I just joined yesterday, but have been following posts for awhile. I didn't want to go to bed tonight before I welcomed you. I can only imagine what a shock it must have been for you to have been diagnosed with Stage IV after almost fifteen years since your first diagnosis. One silver lining is that the recurrence came at a time when the medical profession is so much better equipped to deal with advanced cancer than they were even a few years ago. The ladies here seem to keep up with the cutting edge of every treatment available, so you've found a powerful resource, as well as a group of individuals who can actually empathize with what you are going through.
I also received Taxotere (but only four rounds) when I was diagnosed two years ago. The side effects were horrible, but it was very effective. Although I had no organ involvement, there was a tumor in my upper chest area and one in my larynx. I pretty much worried myself through the whole chemotherapy experience - afraid that it wouldn't work, or even if it did, that I would end up having to have a laryngectomy, which would have ended my career as an SLP. HOWEVER, the follow-up scan showed absolutely no evidence of cancer! While there has been a slight return since that time, just in a small area of my ilium, it is relatively stable, and I am as active as I ever was before the diagnosis. I'm praying that you will be able to share a similar success story when you're finished with your chemo!
Angela
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Dear Partia - Gosh, I'm so sorry to hear what you going through! For what it's worth, let me mention that in my experience things tend to stabilize and become almost normal feeling at about the place where you are. Get the treatment figured out, and give yourself time to get used to it all. I'm not sure what advice to give and am reluctant to give any at all, but here goes: In the phase that you're in, my advice is that you just sort of surrender to it...do exactly what you feel like doing every minute that you can...cry, quake, laugh at life's cruel ironies, lie in bed if you feel like it, binge watch TV, eat ice cream in the morning...whatever you feel like, even if it looks crazy to other people! Do not "try" to be strong...because, again, IMHO, this just prolongs the process of regaining your footing. Dive into and swim in the grief, fear and misery, and I do think that soon you'll find your buoyancy. This is all more on the emotional side...Re: the pain...gosh, I think your doc can help you with that plus maybe there are some alternative treatments you can try....I'll let others comment more on that...It sounds like your pain is worst that what I've experienced to date, so please don't be put off by my weak advice, but I would try lots of motrin or whatever before you go to Rx pain meds. The times during which I felt the worst pain (not as bad as yours, I think...), I came to realize that the pain bothered me mentally as much as physically. I would tell myself "OK, this hurts like a pulled muscle, or flu, so let me deal with it along those lines...the fact that it was a symptom of something as awful as cancer was better set aside, mentally...
Unlikely that this helped, so again, I'm so sorry for what you're going through...
Best wishes, LynnFish
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Hi Dear Partia and Angela - Welcome to Breastcancer.org. We're glad to see you've found our community, although so sorry for the reason that has brought you here.
We hope you're finding the information and support you came for here. As you can already tell, this is a warm and caring community of others with experiences and information to share. By the way, thank you for sharing your story about your Stage IV diagnosis!
If you need help navigating the forums, or have a question, please don't hesitate to contact us via the private message function.
Kind wishes,
The Mods
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Funny, I don't think I ever posted my story here.
In 2004, I had just turned 40, when I noticed that something didn't look right with my breast, I never felt a lump and it occurred to me I should schedule a mamm. I had already had 2 and was diligent about checking monthly as my mom had BC at age 49.
Well, sure enough BC. Stage IIIC, 17 lymph nodes involved! I guess I am an overachiever. They did a bone scan and lung scan in the hospital to see if I was stage IV right away. I wasn't. Triple +++. Herceptin was approved shortly after I finished AC/TAX in June 05.
I went almost 3.5 years after treatment when I started to have pelvic/groin pain. Well, after a few months of dinking around, we did another scan, and then biopsy. It was June of 2008. STAGE IV. crappers. Bone (hip pelvis) and a few lung nodules.
I have lost my hair 4 times,
I have have several chemos, 1 clinical trial. 3 bouts of radiation (breast, hip and spine). I have great success with Herceptin/Tykerb. Almost 3 years. My sons were 4 when I was first diagnosed. My goal is to see them graduate from HS. They are just finishing up their Freshman year.
Here I am when I was first diagnosed. age 40.Here I am with my family (small boy is my nephew)... in April. A few chemo pounds later.
Age 51.
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