Would you share your Stage IV story with us?
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wallaby715, I was diagnosed with stage 3 only to have a pet scan same day to find out it was stage 4 mets to bone and liver. Started on taxatere, herceptin and perjeta, just went through my 3rd to, lots of se with diarrhea being the he worst. Wishing u the best of luck, plan on flying to Florida in march, daughters wedding
Hugs, Paula
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Wow so inspiring thank you for sharing! There is always hope!
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Please do keep sharing. We'd like to post your stories here, with the others: Member Stories
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I was just diagnosed with stage IV estroge/ progesterone positive, HER2 negative. So far it is just in the bones. In august I had a clear mammogram. Did a self exam in late October. Biopsy and doctors here in Georgetown, TX told me I should have chemo and double mastectomy. Said I wanted a second opinion and went to MD Anderson. There they diagnosed Stage IV in the bones. I am waiting to start letrozole and ibrance. I will have treatments/medication here in Georgetown and go to MD Anderson every three months for evaluation. Received one Zometa infusion and will have that on a monthly basis. Looking to be in touch with others in a similar situation.
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LoraineM - We're sorry you are joining us, but welcome! You'll find Breastcancer.org a community full of knowledge and support.
Besides the Stage IV forum, you may want to join also the Topic: Starting Chemo January 2017 to meet others going through chemo right now, as well as the Tips and Shopping list for getting through Chemo thread for great tips and practical advice, and the Bone Mets Thread.
Hope this helps. We wish you luck with your treatment, please check in and let us know how you're doing!
The Mods
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I had been waiting my entire adult life for the diagnosis. In my twenties I often had fibroid tumors removed. Then as science progressed and radiologists said they could detect which lumps were cancerous and which ones were not, I was always on a "wait and see" basis each time I found a lump. My other was diagnosed two separate times (6 years apart) with BC. My great-grandmother died of BC (early 1930's). My mother's cancer each time did not require chemo. They caught it early enough and she opted each time for a mastectomy.
In August 2012, I found a lump in my right breast. Mammogram confirmed there was one, but the radiologist recommended a "wait and see" 6 month course. I was not happy with that and visited with a surgeon who also said, follow the radiologist's recommendation. In February, 2014 the mammography showed it was still there. They recommended a biopsy. Invasive Ductal Carcinoma. Early finding implied there would be no need for chemo. May 2013 double mastectomy performed. Since the biopsy, the tumor had grown and therefore, I would require 4 treatments of taxol/?? can't remember. Struggled with reconstruction and infections for the next 6 months. In February 2014, final reconstruction completed.
Maintained quarterly visits with my Oncologist. Regular CBC panel drawn each time. In November, 2015 she thought it would be a good idea to get a basis for a CA 15-3. My number came back about 3,900. I was immediately given a PET scan. Tumors were in the bones and the base of my brain. Started on Faslodex. My CA 15-3 numbers just kept getting worse. In February 2016 they opted to give me the CA 27.29 test. That number too, was well above 3,000. I attempted in August to start Ibrance. October 1, 2016 went to the ER. I had blood clots in 4 lobes caused from the Ibrance. Stopped immediately. Now it is January, 2017 and the pain is getting worse in neck, shoulder, right hip, back. I have just started 5 mg. of Afinitor. Wish me luck. I am okay with the fact I am dying. I have planned everything. I handle estates for a living and understand how important it is not to burden my family with final needs. We refer to this as your will is maturing.
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sailawayaussies, get on the bone mets thread here. There are other treatments available. what about Falsodex, Letrozole? what about chemo?Are they sure it was the Ibrance causing the blood clots? I think you may want a second opinion. love and Hugs MJH
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Sailawayaussies, I see now that you were on Falsodex, and I see that Ibrance can cause the pulmonary emboli. I am worried about you. Seems like your MO's were lax in the past. Good luck with the Afinitor. What about clinical trials? MJH
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I found the lump in my right breast in November 2008. On December 4th I was diagnosed with breast cancer, a little over 1 cm. I had a lumpectomy where they found micromets in two lymph nodes. It was triple negative BC, which I didn't know much about, but the more I learned the more scared I got. I started ACT chemo in January 2009 and wasn't finished until June. The hair loss was a real blow to my self esteem. Before I was due to start rads, they did a follow up mammo. They found DCIS in the same breast. I was beyond devastated. That summer I had a bilateral mastectomy with lattismus dorsi reconstruction. No rads.
My mental state suffered severely. I was in agonizing pain from the surgery and became addicted to painkillers. I also developed anxiety attacks and PTSD. I suffered from nightmares about doctors and hospitals. I was prescribed antidepressants but they were not much help.
Three years later I found a lump in the exact same spot and knew it was back. After an excruciating biopsy at the breast surgeons, I remember going back to the car with my husband and just sitting in the back seat screaming until I threw up.
They removed my new lump and the implant and I had 35 rad treatments. Then I had to go through reconstruction again for the right breast. It was grueling. I developed a lot of fluid that hurt and kept having to be drained. I blame this on the fact that one of my kids brought home lice and we all got it and I was constantly using my arm to try and get them out of my hair. Terrible timing, not that lice are ever welcome.
My marriage took a real hit from all of this. My husband did not try to understand what had been done to my psyche and how and why I'd changed from the person I used to be. He got sulky and cruel with me until he finally just checked out of the marriage and set up with a new woman. I finally got the proper psychiatric help I needed and was actually happy when he finally moved out. No more walking on eggshells, I could finally be myself!
In April of 2016 (a most horrible year) I started coughing up blood. I went to the ER where they found a mass in the upper left lobe of my lung. I had the lobe removed by a thoracic surgeon and yes, it was metastatic BC. I've managed to deal with this mentally much better than I did before. I know that I'm going to die from this. So I'm focusing on my kids, making sure they're set up for the future and we have good times together. My oncologist is trying to get me into a clinical trial but things are moving very slowly. I do have a wonderful boyfriend now who is very sweet and understanding and I forget about all this when I'm with him. So life goes on...
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I wish to be removed from membership from this site. I guess its a closed forum to only old friends & I also didn't join to be treated rudely or as if I'm stupid. apparently some are gods & their advice is all that matters. I seen some say that patients should do or not do certain things. I think that is dangerous. Well I known you dont care what I think so just remove me
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I live in Oslo, Norway and was diagnosed initially in 2014 with Stage 3, had several rounds of chemo, then in 2015 had a double mastectomy, three months later the cancer came back. While all this was going on I fell in love and moved to Norway with my now husband. I was diagnosed with Stage 4 in April, started new rounds of hormone and chemotherapy treatments. June to December I was on Taxol, Herceptin and Perjeta, December to February just Herceptin and Perjeta. Three weeks ago I found out the tumors were growing so now I am back on Taxol weekly and Herceptin and Perjeta every three weeks. I will post my next episode on Monday. I appreciate this forum. I cannot post the link to the video or the video sooo....0 -
Hello. Keep up with all appointments and there are stage 4 treatments and people living for 20 years, never give up.
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Hello everyone. I was diagnosed with Metastatic Breast Cancer, Left Breast/ Sternum/Lymph in 2013, at age 50. I received Surgery, Chemo, Radiation. Pet Scans and the usual diagnostics, since my initial diagnosis. A few months ago, I began having increased sternal pain. My Oncologist, stated nothing showed up on Pet Scan. Repeat Pet Scan showed large mass to sternum. MRI revealed further mets. We are now treating the symptoms of this dreaded disease. However, I am very fortunate. I have faith in God, a wonderful husband, and excellent physicians. So many people do not have the support that I have received. This can really make a difference.
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Emberlea, Andrea and recky1 - Welcome to BCO! And thank you all ladies for keep sharing your stories here with everybody!
The Mods
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Hello. It has been 10 plus years since I was on BCO (DCIS 2006 with bilateral mastectomy and DCIS again 2007 with radiation, Tamoxifen). It was a safe place to connect with others.
Fast forward a decade with the allusion I was cured.
October 2016 after having SOB with minimal exertion (I was a runner and fit), I was diagnosed with Pulmonary Tumor Emboli Syndrome- breast tumor cells had invaded the arterioles in my lungs, very rare. The CT scan showed widespread liver mets (Er+, PR-, Her2-). Didn't see ANY of that coming.
I was hospitalized 3 weeks and given emergency AC. The chemo saved my life and it also has given me more "time". After completing 4 cycles AC my disease was stable. I am now off oxygen, and on Ibrance 125 and Letrozole. My first CT since starting I/L will be in April. I feel good and walk 1.5 to 2 miles/day. I am happy.. and well, the Celexa helps.
As a returning member of BCO, I have learned that people with stage IV still enjoy living AND not afraid to live; working, exercise, travel. I have learned from others about treating side effects from the cancer drugs, about clinical trials, about the many lines of treatments open to me and how to numb that port prior to flushing and blood draws!
But most importantly, I see love and support from all the postings that I have read - thru the good and unfortunately, the painfully sad moments. All of it.
Thank you for this online community.
SandiBeach57
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Hi
My name is Liz and I was dx Stage 4 just yesterday (15/3/17)
I was originally dx in 2011 with IDC of left breast. 1 axilla LN positive and involved intra mammary. I did a Taxotere, Carboplatin and Herceptin followed by rads and 6 years on Tamoxifen. Like many others, I thought I'd beaten it and was busy teaching and raising 3 teenagers. I am now 46 and my daughter only 14.
My mets appear to be in a small chest mass, close to my sternum. 29mm on last scan. The biopsy was only a few cells, a poor result really and I am going for an immediate second opinion. There are 3 other suspicious area- a mild thickening of my upper GI and endometrium. MRI ordered.
My shock, grief is of course brand new and raw. Thanks to ladies on this forum who have been there for me, holding my hand whist coping with their own treatments and fears.
I meet with an oncologist on 23 March and it appears chemo will be on the cards and this should put me into menopause, failing that they will shut down my ovaries as this mass is ER positive.
Very scared but these stories give me hope and inspiration. Here I go right at the very start of my stage 4 journey: the place none of us wants to find ourselves in.
Liz
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Jackboo09 - I hope they shut down or just get those darn ovaries out, cut off it's food and it shrivels and dies. I had a recurrence on Tamoxifin and it really gave me other side effects like uterine thickening, cysts, a hot mess in that area. My gyno said your ovaries make estrogen well into our 50s, even if not enough to ovulate and cause menstruation. I met a lady who is 6 yrs stage IV last spring who had a small tumor out of her lung and one on her spine. Herceptin every 3 weeks and she is still NED! Heres to hope and long life after estrogen for us both! God bless...
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Hello 7of9
Thank you- your story of the lady 6 years on has lifted my spirits.
May I ask what happened after the womb lining thickened. I have stopped a Tamoxifen. Lining was 11mm which I believe is borderline for major concern. Knowing my luck I'll have to face surgery on this area too.
Best wishes
Liz
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I was diagnosed with Stage 4 metastatic breast cancer June 28, 2017. I have never missed a mammogram and never any issues. This news definitely stopped me in my tracks. I am ER/PR + and HER2+. The cancer has spread to my liver and my lymph nodes. I have been going through therapy since July. The chemotherapy and the dissolution of what I thought were strong bonds with people was definitely the hardest for me. Being sick has shown me many life lessons,which has enabled me to become a better person. I like many other women, truly had no clue about stage 4 breast cancer. This diagnosis was definitely the icing on the cake. Just prior to the diagnosis, I left an abusive relationship of 30 years. I felt like I was being punished. Still do somewhat. I currently have the NED status (no evidence detected) from my last pet scan. Everyday is a gift and I can only trust in God that some miracle treatment will be found before the cancer is back. God speed
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Do you know someone personally that has survived 20 years with Stage 4? Just curious. All the odds are so bleak for Stage 4.
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I know several on other forums here. They are amazing and I plan to be one of them. God bless
~M~
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my name is Rebekah/Becky and I'm 41. I have 3 children all teenage boys. I married my amazing hubby in 2015.
Well the journey started 11 years ago. I had a lumpectomy and a full node clearance followed by chemo and radiotherapy. I did really well on the treatment and I had a very positive attitude. It had gone and that was that.
2 years later a lump was found on a routine mamagram. This time I had a double macectomy and reconstruction and treatment as above. Still thought that's it we've done this.
3 years ago I started having significant pain in my back upper thoracic part. I was told the scan was clear and then spent the next two years going out of my mind with pain. Seen by many different people to help the pain but nothing worked. The pain team gave me a booklet explaining how to cope with long-term pain. I felt everyone thought I was making it up. I started drinking a lot as this gave me some short term relief.
August last year I rolled over in bed to get out and something happened and I was in agony. I couldn't get out of the extreme pain. After a week of this I started to lose feeling in my legs had pins and needles in my hands. I had difficulty in weeing. I took many trips to the gp but they didn't really seem alarmed even when my walking went down hill. I needed supervision and my walking was all over the place.
Thankfully my mate is an OT she called in took one look at me and took me to A&E. Within the hour I learnt that I had fractured one of my vertebrae and it caused a spinal compression. This was due to a tumor on my spine. As the day went on my condition was explained to me and my husband.
The operation by an amazing man saved my legs thankfully. It's taken me a long time to recover and get my walking back to be safe on my own. Now that has happened I am struggling with the cancer mentally I can't get my head around that it's here to stay. It is overwhelming me on days. I've met some amazing people through this illness. They have such strength. I feel terrible that I just can expect it.
I need to find some tips of getting on with living my life on my good days and not let it take over my head and my life over now......
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Hi Kimmy and Becky, we're sorry you are sharing your Stage IV story here...but wanted to say welcome! We're glad you've found this amazing Community to help you along the way!
Becky, besides this thread, you may want to join also the Living with Metastatic Breast Cancer topic, and the Need Your Tips for Members Newly Diagnosed Stage IV topic. We're sure you'll find tips and support from other members under similar situations. Hope this helps!
The Mods
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hi ya travelnsurvivor.... my names Rachel. I'm fascinated by your story of going into remission from stage 4. I've been told by my onc that stage 4 is not curable.... they can delay the inevitable and give me pain relief but that I won't get rid of the cancer. Did your doctor tell you something else? Or are you one of those miracle remission types? Either way I'm pleased for you.
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My journey started in Aug 2016. I found a lump and went to get checked out then the doctor being concerned, refered me to the Well Woman's Clinic who set me up with a mamogram. I was then refered to a surgeon who had me do a needle biopsy and other tests. The mamo and needle biopsy results were positive for breast cancer in my left breast and the lymph noids in the armpit. There was also a lump in the lymphoids in the left side of my neck. I was set up for a bone scan, CT scan, biopsy on the neck and to see an Oncologist at the cancer center. I met the Oncologist in September who gave me the rest of my test results. He told me the cancer was not localized to one breast and that I have stage iv breast cancer that matastasized because it was in the lymphoids in both armpits and positive in my neck. He set up two more tests. First was blood work to see if I was positive for HER2 to get hormone treatment because the offending tumor was estrogen receptor-negative, progesterone receptor-negative. The other test was a Pet scan in Halifax; a more in depth type of CT scan to see if the cancer was in any other parts of my body. The blood work came back negative to hormone therapy. When I saw the Oncologist again he said my diagnosis went from stage iv breast cancer to stage iv triple negative breast cancer because HER2 was not positive and the Pet scan showed two spots on my lungs. The only treatment available was Chemo. I also had genetics testing to test for BRC1 and BRC2 gene to see if it was passed on to me. He wanted to do a round of four sessions of two types of drugs (nickname:Red Devil) then another round of four on a different drug. They would both take place every two weeks as an iv of the drug going into my body along with getting a needle by the VON for five days in a row starting two days after each treatment. The needle was to boost my white blood count so I would not get sick because the chemo kills the cancer cells and some of the good cells. There are side effects from the chemo but different for each person. On the first round I got nausea(no throwing up ) and my migraines I had for years that went away came back bad and my taste buds changed. With each doctor appointment when he did a basic physical found no difference after session three and decided to start round two earlier. With this chemo you get bone pain, flue like symptoms, neuropathy(nerve type pain that can cause numbness in hands and feet). My side effects was back spasm and bone pain after first session, and with next two sessions it was bone pain, and after fourth session it was a bit of bone pain then three days of bad neuropathy then three days of mild neuropathy. After only the second session with another basic physical, it was working and the tumors were shrinking. Doctor said he could add two more sessions max on this chemo drug. Got my genetics results in December which stated I do not have the gene and that within the last six months they have been able to test other genes, which I decided after talking with the doctoto get my sample further testing. The future is still unknown so for now, two more sessions of Chemo then back to Halifax for the Pet Scan. Second last treatment Jan 3, 2017 and found out today that I have to go back to Hali to do my test on Jan 30th. Final chemo on Jan 18th! Did last round of needle on Jan 24th. Had my PET scan and the results came back as 90% shrinkish; no remission because this type is not cureable and will never be 100% out of my body. A 1cm of tumor still left in my breast and in my lung. The other genes that were tested also came back negative, and still no answers as to how I developed this rare agressive type of cancer. Waiting on approval for a maintenance drug to keep the cancer at bae and lessen the chances of it getting worse and returning quicker. My Oncologist gave me an extra chemo after I got my results because he did not know how long it will take to get this meeting and at the three week mark is when this cancer could start to flare back up. Will be getting radiation but undecided on surgery and this drug till after a meeting from the tumor board. Will know everything on Feb 23! My oncologist was able to get the maintenance drug which is a six moth pill to take only after surgery if cancer is still present in the tissue(multiple). If there is no multiple positive reading in the tissue then he will keep the pill for in the future if anything were to flair up. Surgery is on March 3 and it will be a single mastectomy and lymphnoid removal in one armpit..Surgery went great and I have no pain just some stingy stretching sensation. Not on any meds just still taking my turmeric like I have since day one and before cancer. Got my results back from surgery. In the breast was told in Sept the size was 18mm and when removed it went down to 9mm and only less than 1cm of cancer found in it. The lymphnotes were only 7 in the one armpit and only 2 of them were found positive! Had another PET scan on April 13,2017 before I am able to start radiation. The results came back that besides what was left over from my surgery that it was back in the lymphnode area under the right armpit. The Radiologist could not really see anything on the scan and when he checked way up in the armpit with his finger could not feel anything. He called my oncologist to see what he thought about it and if radiation should go ahead or not; and he said yes to go ahead. Doing mapping on April 26th then waiting to start my five weeks of radiation.
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Thank you for sharing your story with us, Erinr28! We hope your mapping and radiation treatment goes well. We're all here to support you!
The Mods
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Hi everyone. I was dxd with stage IV BC in May that had metastasized to my core bones and liver. Prior to this, I was very diligent with my mammograms, and had no pain or additional symptoms other than fatigue and a little back pain after I had been sitting at my desk for a long period of time. What 63 year-old does not have fatigue? But I also wondered why I was so out of shape all of a sudden. I struggled to walk up the hill to my office. Last May my mammogram was clear but there was a slight shadow under my arm. I went in the next day for an ultrasound and the tech saw an enlarged lymph node. She did an immediate biopsy and I drove myself home on the busy San Diego freeway with an ice pack under my arm. Three days later I received a phone call at work from a surgeon who told me my test was positive for cancer. My husband and I both work at the same university, so I shakily walked down the hall and informed my husband I had cancer and we had to go home. That was all of the warning he had, but it was all I could do. He has been my rock ever since.
A PET scan and MRI the following week revealed the extent of my many tumors that had metastasized to all of my core bones, spine, clavicle, ribs, right arm, hips, etc., thyroid, and enlarged lymph nodes, but thankfully nothing in the neck or head. There was no lump in either breast, but since my results of ER+/PR+ HER2- were consistent with breast cancer, that was my diagnosis. My surgeon referred me to an oncologist/hematologist since he could not help me. My oncologist, who is the same age as my daughter, immediately placed me on targeted therapy of Ibrance and Femara, and I receive Zometa every 3 months. I tolerate the combination well with mainly increased fatigue, occasional nausea, and thinning hair. Following my PET scan in January, my oncologist informed me ALL of my mets were resolved, including my liver. This is amazing and I credit it to my amazing support system, and prayer. My doctor was surprised the liver is also clear. I still have activity in my lymph so I remain on the Ibrance and Femara since it is working. After 11 cycles, I am doing fairly well. My immunity numbers are low but not too scary. My daughter and 2-year-old granddaughter lives with me and brings home multiple viruses from daycare, but I am able to fend off most of them with care wearing a mask around her when she is sick, and sanitizing everything before I touch it. I was even able to fly by myself to MO and meet my new grandson!
My only current complaint is increasing fatigue due to the meds, but I am thankful for the extension of my prognosis. I plan on watching my three (so far) grandchildren grow up and celebrating my 50th anniversary in 6 years. The picture was taken when my family all came home when I was first diagnosed.
To GeraniumRose: My doctor told me the same thing. But if I can do well, so can you. Don't let your oncologist or diagnosis determine your motivation. There are many good people working hard for your survival. God bless!
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I am/was a caregiver to my beautiful wife, Amy. She was my best friend and always will be. It has been 5 and a half years since Amy became an Angel. We started with stage IIb triple negative bc. This website provided me/us with so much information and comfort during our 14 month battle. I cannot express how much the support and information and friendships Amy and I received from this site meant to us. The strength and hope we gained through these friendships helped us through each and everyday of our fight. I often think of those who fight this horrible disease every day and pray for those who fight the fight. Thanks to all for the support this site provides and prayers to all. Luvmywife
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Thank you IntoLight and Luvmywife for sharing you inspiring and courageous stories.
It's so important that these stories and experiences are shared with others.
All of you here are true hero's
With love,
The Mods.
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I know this is long, but it includes my whole cancer story, with all the trials and tribulations and problems that can unexpectedly occur along the way.
Sept 2011 I went in for normal mammogram. A few days later they called me and said they wanted me to come back for more. I wasn't worried, many of my friends had had this happen, and it was always nothing. When I went back, they did more images, and the nurse told me to wait while the radiologist reviewed them. She came back and said he wanted some more images. This happened twice. Now I was getting nervous. She then said the radiologist wanted to talk to me. He told me there were some calcifications, but not to worry, because the majority are always nothing. So I wasn't too worried. I was then sent for a Stereotactic Biopsy. This is a brutal procedure. After being poked and prodded, squished and stretched, cut and inserted with a metal clip, I went home to wait for the results. Again, I was told most likely it's nothing, it's just calcifications. Well, I was against the odds, it was cancer.
Met with an Oncology Surgeon and I was scheduled for a Lumpectomy, followed by radiation. I took off time from work, and with my family around me, was in the hospital, all gowned up and the IV going. I was waiting for the last step before surgery, to be wheeled down to Radiology, so they can insert the guide wire to the metal marker clip. Waiting and waiting and waiting, while nurses and doctors kept going to the phone. I'm way behind my surgery time now. Finally, someone comes and wheels me downstairs on the gurney, and parks me in the hallway of the Radiology Dept, and I'm told they will bring me in shortly. Again, a long wait. I am finally brought in, and the Radiologist tells me a mistake has been made. He said at the time of my Stereotactic Biopsy, it was noted that there were two other areas of concern found, and that it was recommended those areas should be biopsied before any surgery, as the results could change the outcome. Neither Radiology nor Surgery know how this got missed. I should never have been scheduled for surgery. So they wheel me back up to the hospital, take out my IV, and discharge me. They tell me to get something to eat and drink, since I've had nothing since the night before, and then go to Radiology, where they are going to do another Stereotactic Biopsy right away. I, and my whole family, are in shock and very frustrated.
The first brutal biopsy lasted an hour. This time it was longer, and I was in agony on that horrible table and fighting back the tears. When I couldn't take anymore, I meekly asked the doctor if he was almost done, and he said no, sorry, but he needed to do another whole area. After two hours on the table, and more marker clips inserted, I was finally able to sit up, but I was so shaky, and the nurse said that's because they had given me twelve vials of lidocaine. It kept hurting during the procedure, because he had to go really deep, and such a wide area. They set me up an appt with the surgeon, who would give me the results. Again, sent home to wait and worry.
The surgeon said all areas were positive for cancer, and now instead of a lumpectomy and radiation, I needed a mastectomy and most likely chemo. I would need to meet with the Oncologist. We decided to do a bilateral mastectomy, which would give me the best odds of no recurrence. I also met with a Plastic Surgeon, to discuss the different types of reconstruction available. Even though it seems most do, he would not start the recon process by inserting the expanders, at the same time the mastectomy is done. And now I am glad, because I decided to go flat. I wish I knew that at the time of the mastectomy though, because they did a skin-sparing procedure, and I was left with all the extra skin and blobs left behind.
I woke from the surgery, in the most excruciating pain I've ever had. Later, my whole family told me they had to keep leaving because they were crying, even the men, they couldn't take seeing me hurt so much. (Now we're learning this is a sign for PMPS). And I always had a very good pain threshold, so they knew it must be bad. I was sent home the next day, which I was not ready for. This was a thousand times worse than my C-sections, and they kept me for 4-5 days for those. I live alone and had a very hard time dealing with the recovery, not to mention, the horrible drains. A week later, at the surgeons check up, she removed one drain, but the other side still was putting out too much fluid. I wanted that thing out of me! Another two weeks, and the drain stopped working, it kept sucking up air, because the incision wasn't healing, it started opening up in spots. She opened up the entire incision, took out the drain, packed it, put me on antibiotics, and scheduled another surgery. During surgery, she cleaned it out, cut some more, put in a new drain, and closed me back up. Finally it started to heal, and I got to lose the drain after having it over a month.
By this time, I'm a month late starting my Chemo treatment, and it's Christmas week, I asked them to let me wait a few more days until after the holiday. During the Mastectomy, they took the Sentinel node, and it appeared to have no cancer, so they didn't take any more nodes. But when the Pathology report came back, it was positive for cancer cells. My Oncologist said they were microscopic, and the chemo should take care of them. ER+ PR+ HER2- I did 4 rounds of Taxotere/Cytoxan. And was to follow up with 5 years of Tamoxifen. Six months later, I knew I would never do reconstruction, and I couldn't stand the extra skin/fat/tissue left behind, so they scheduled me for a surgery to revise the incision. I thought this would be an easy surgery, but it was not. They took everything, and pulled it so tight, my breasts are now indented, and the incisions go all the way around my sides to the edge of my back.
Five months later, while doing another MRI, they found a tumor on my spine, and it was pressing on my spinal cord. So another surgery, a huge surgery (Thoracic Laminectomy, done by a Neurosurgeon) to remove the tumor. Fortunately it was benign, it was a Meningioma tumor, and it was so hard and calcified, they had to use a drill to get it out. They couldn't remove all of it, because of nerves that it was effecting, which would have paralyzed me. But they got most of it, and released the pressure on the spinal cord. After only one night in the hospital for the bilateral mastectomy, this time I was in there for 9 days, and five of those I had to be flat on my back. Went home with 28 huge staples down my back. Recovery was hell, they said I lost 50% of my muscle/body strength. Plus, my body was still healing from the three breast surgeries. Four major surgeries in a year.
Next I got a DVT blood clot in my leg. Most likely it was from the spinal surgery, but since Tamoxifen can increase your risk for blood clots, they changed my meds. I wasn't in menopause when first diagnosed, hence the Tamoxifen, but chemo put me into instant menopause, so they switched me to Arimidex, for the next four years.
I was diagnosed and suffer greatly with PMPS, and well as Post Laminectomy Pain Syndrome. I have nerve and muscle damage and pain issues, from my chest, arms and armpits, and from my lower back all the way up to my neck. I can't stand or walk long, or even sit in most chairs comfortably. I use a cane/walker/wheelchair. I can't lift or carry anything even slightly heavy. I have a Pain Management Specialist, and am on Morphine 24/7, and still get a lot of breakthrough pain. I also have neuropathy in my feet/legs.
I just finished my five year mark and the end of Hormonal therapy, the end of this March. And the first week in April, I was in the ER from uncontrollable flank pain, and they did a CT scan. They ruled out the kidney issues they were checking on, but found enlarged Axillary lymph nodes. From there it's been a blur. Was sent to my Oncologist for follow up, who sent me for PET scan. It showed multiple Axillary nodes, Mediastinal nodes, Pre-Tracheal nodes, and a spot on my scapula and spleen. Next was visit with Radiologist to do Biopsy, he did two Axillary nodes, both came back positive (as expected), ER+ HER2-.
So now I have Stage IV Metastatic Breast Cancer. They can't do surgery to remove the nodes near the heart, so they won't do surgery to remove the others. I started on Xeloda the middle of May, for my first line treatment. I am still in disbelief, and am so scared. I truly don't know how I'll be able to keep up this fight, because with all my other medical issues, there are already so many days I'm in too much pain, or too fatigued, or just don't feel well enough to to do anything. I am praying the Xeloda works for me, a few days into my first cycle I had to stop, and then reduce the dose, because of the side effects.
If you've read this far, I thank you! And I thank you for this wonderful site. In a few short weeks, I've already learned so much, and found so much helpful information. Not to mention the invaluable advice and support from others going thru the same thing. 👍🏼💜🎗
Four generations of special birthdays: my Mom's 80th, my 50th, my son's 30th, and granddaughter's 1st
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