My Continuing Breast Cancer Fight.. metastasized now to my spine
Many of you may already know of my now 8 year ongoing battle with cancer. I am now back in active cancer treatment due to finding out recently that my Breast Cancer which was already Stage 4 Non Curable/Chronic Cancer, has now spread. A very large and intense tumor has been found in my lower spine (bone) and also new and very active lymph nodes. My cancer is now labeled Metastatic Breast Cancer Metastasized to the Spine and Lymph Nodes. My new oncologist says we can only hope to shrink the new tumors but I will still not be able to reach a 'clear' or survivor status ever. I will have to be in active cancer treatment for the rest of my life. This means multiple trips each month to the hospital for injections, blood work etc. along with taking daily cancer treating pills to fight this recurrence. Side effects are numerous with this treatment and I hope I can still continue to work. This will put a further strain on paying my monthly bills and trying to maintain some energy to do those daily chores that I must do myself since I live alone.
Any help will be greatly appreciated and put to good use. I joke that at least this time, my oncologist says I should not lose my hair (I lost my hair during infusion chemotherapy twice now). It has taken me over four years to grow my hair back, although I did look rather good with my bald head or my wigs! I have tried to look as best as I can over the years. My sister even gave me a t-shirt with the caption 'But I Look Good' because everyone, including doctors, say the same words to me when they find out that I have active cancer. I want to thank my sister for her incredible support both emotionally and financially thoughout these difficult years. She and my brother in law along with other relatives and friends have always been here for me and have helped so much through the years but this newest cancer occurrence now needs so much more help since this cancer will now not ever be gone for the remainder of my life.
These past few months have been extremely difficult in needing to find a new oncologist after the discovery of this metastisis. I now have a new oncologist who is very forward thinking and very aware of new treatments. My treatments will now be endocrine therapy since he says chemotherapy and radiation would not be effective in treating these new tumors. The best hope is to shrink them and keep them from flaring up again there or elsewhere.
This treatment involves injections and oral pills. There is a long list of possible side effects. I will be on this continuing type of treatment for the rest of my life. Some research studies have said that life expectancy could be 10 months to two years. So I am hopeful (as well as my new oncologist) that this treatment can keep me going far beyond that expectancy.
Throughout all of these years of cancer, I have continued working (I am my own sole support so I have no choice but to work) and I hope to continue working. My new oncologist is aware of that and is hoping that he can keep any side effects I might have under control. But I will have to do blood testing quite often (at least every two weeks to begin with) as the treatment could cause my white and red blood cells to drop drastically and the medications could increase my blood sugars, affecting my diabetes. I developed diabetes a few years after my original breast cancer.
I also have developed other conditions: chronic venous insufficency (which causes my legs and feet to swell); fatty liver disease, gastroparesis; Hashimoto's (thyroid), asthma and COPD; neuropathy (constant pain); degenerative disk disease; osteoporosis; bone spurs in both my shoulders and now cervical spondylosis in my neck (which now pops and cracks almost constantly with movements of my head. These hurt and I can also hear the noise.) and dry eyes. I have often asked my primary doctor just how many more diseases or health issues I need to have before I appear in the medical journals!
I wish I could say that I am a cancer survivor, free of cancer. Since I will never be able to, I still feel that I am surviving cancer each day that I am still living! I have amazing family and friends who are supportive of me in my cancer battle but after eight years of constantly fighting cancer, I am tapped out! It is a struggle to pay my bills. I am still wearing the same clothes for many years. I can get so tired that it is hard for me to prepare meals or clean my house. Local help has been non-existent. Any help/donations will be so appreciated! Perhaps I am still here to help others fighting chronic cancer to know there are those with chronic cancer still here and hoping that more research can be done to knock out chronic cancer as well as all cancers!
For those of you who may not know about my cancer fight, here is my story. It is a bit long because it covers my eight years of my cancer battle.
In late 2009, a tumor was located in my right lung. After a biopsy, my right lung collapsed! The biopsy report said it was small cell lung cancer. I have never smoked a day in my life. At the time, I was advised by my then oncologist that I did not really have time for any second opinion and should immediately begin chemotherapy and then radiation as I was told this was a fast moving cancer. Having never had cancer before, I believed them and started treatment.
Almost a year later, during a bronchoscopy, samples of the tumor were removed from my bronchial tubes and those samples were then diagnosed as 'carcinoid cancer', NOT small cell lung cancer. The doctor and hospital said 'Oops!' Really?! I was told that chemotherapy and radiation was not the proper treatment for carcinoid tumors! At that point, I did go for a second opinion at another hospital. They were supplied with the original tumor slide and they said emphatically that it should have never been diagnosed as small cell lung cancer but by this time, the tumors were all though my right lung and could not be removed surgically as I might not make it off the operating table.
So now I still have those tumors which thankfully have remained somewhat stable to this point. But about a year and a half later, I was diagnosed with invasive ductal carcinoma..Breast Cancer.
After a double mastectomy, I again went into infusion chemotherapy treatment for eight months. The plastic surgeon had placed expanders after the surgery in hopes that I might have some type of breasts. But apparently he did not notice that infections were still present in that area and after three additional surgeries to deal with the infections, the expanders were removed. So today I still have a very rugged stitch line in that area with excess skin under my arms and that area continues to be very uncomfortable.
Less than five months after I completed chemotherapy for my breast cancer (radiation was not done because it was determined that I had the maximum amount of radiation after my lung cancer treatment) my breast cancer recurred in the original chest area.
I had changed oncologists and was prescribed pills that I was advised would keep another metastasis from occuring. I was told if I stopped taking these daily pills, cancer would return and I would be dead within a year or two.
Within the last year, I could feel that something was happening and I was concerned that my lymph nodes might be active again. I asked my oncologist at the time for tests to find out. Each time I visited his office for regular visits, he would just say 'You are doing fine.'
Finally in July 2017, during a visit with the oncologist, I insisted that I needed a PET scan (test that can detect any cancer in the body). The doctor refused, saying that my insurance company would not approve the test! After insisting that my insurance company would pay for the test (I had not had a PET scan in over four years), the doctor kept saying no. He finally said he would order CT scans.
I insisted that IF something was found on the CT scans, that he would order a PET scan. He agreed.
I had the CT scans and the tests found the newly active lymph node activity. It then took me THREE weeks of calling his office asking for him to order the PET scan for him to finally get on the phone. He again said that my insurance would not approve a PET scan! This was very upsetting to me. He finally said he would write the order. My insurance company approved the PET scan within minutes!
I then scheduled and had the PET scan. The oncologist's office would have received the results within three days. A week later, I called the imaging center and found out my results were definitely ready. I always pick up and keep a copy of the CD and the report for each medical test. At this time, I still had not had any word from my oncologist's office or any attempt made to reach me to discuss the results.
As I read the report, I was not surprised to see that I now had two new active lymph nodes and the test number assigned during a PET scan showed that the levels indicated they were definitely metastatic cancer.
I was stunned to read that I also now had metastatic cancer now on my lower spine as well as in the new lymph nodes! I had not anticipated that, even though several years earlier there were suspicious spots on my iliac bones in that same area. Those should have been watched with tests by the oncologist. But they were not.
It then took me six days to get my oncologist on the phone to ask him when he had received the report and when he was going to call me about this and what plan did he have for treatment? He would NOT answer my questions over the phone and told me that this was 'not urgent!' Really?! He finally said that I should come into the office the next week and that he would answer my questions at that time.
During that visit the following week, he did NOT answer my questions. But he had changed his tune about the 'not urgent'. I asked about what types of treatment should be done. He then consulted his ever present laptop and tried to look up kinds of infusion chemotherapy possibilities and then endocrine therapy drugs.
I already knew before that time that I would need to find a new oncologist as I had already lost faith in this doctor.
So now I had to go on a search for a new oncologist while constantly wondering how much the new cancer was progressing. The tumor on my spine was described on the report as INTENSE, a word that I am sure is very rarely used in such reports. It had measured at 19.17 SUV (uptake number,,, not a vehicle!) (the number where cancer is detected on that scale is 3.)
Thankfully, I now have a wonderful new oncologist at a different hospital group.
So this is my story. Thank you for reading it. I have also tried over the past few years to bring more awareness of metastatic cancers. The research for this is the most underfunded. You may see many people in your life or just passing you on the street who are fighting a metastatic cancer. We don't all look 'sick' but we are going through treatments and have chronic pain. We are just trying to live as normal a life as we can and treasure each day that we are still here on this earth.
DonationsSee top donations
- Cathy "Ladybug" Malone
- Christina Honchell
- Jodi Abel
- Marsha Mallow
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more