CA-125xiety !

Recently there have been a number of articles written about "scanxiety".
You may read one written by an ovarian cancer survivor here.  Another was posted on Medscape aand titled Cancer 'Scanxiety' Is a Real (Terrifying) Thing. You may read it here.

In response to a tweet about that Medscape article I tweeted:

#gyncsm Yes scanxiety is felt by many cancer patients. As is "CA125- xiety" https://t.co/fOLABfVnYg

— Dee Sparacio (@womenofteal) February 11, 2017

Well the past few days my CA-125xiety has kicked in.

This morning I went for the blood test so the results would be ready for my appointment with my gynecologic oncologist next week. Am I anxious? My brain says I shouldn't be nervous. I feel ok for the most part although I have been more fatigued recently. 

I've read many articles about screening using CA-125 and CT scans. One study reported last year in JAMA Oncology says, "CA-125 tests and CT scans are still routinely used for surveillance testing in patients with ovarian cancer, although their benefit has not been proven and their use may have significant implications for patients’ quality of life as well as costs".  I get it. My CA-125 result was in the normal range up a few points when I recurred in 2008. I shouldn't worry, yet I do. 

It is a funny feeling and hard to describe to one who has never been in this type of situation.  I am merrily going along in my new normal and then a sense of dread comes over me. I get anxious about finding the time to get things done. I hesitate making plans a year or two out. I start to rethink what brings me joy. What should I not be doing right now? What should be at the top of my priority list? Spending more time with family and friends goes back to the top of my list if other commitments were heading to the top.  I go on a cleaning out spree. I get rid of things I won't need if I recur. I get upset with people who "Sweat the small stuff".

I am uneasy because I know, maybe too much, about ovarian cancer. It is a sneaky disease. I know women who have gone years and out of the blue have a recurrence. Sure I can eat healthy and exercise but there is no magic pill that I can take to prevent my cancer from returning. How I wish there was.

It is difficult to get over this feeling. I try all those things that have helped me cope with this sense of apprehension in the past but I am not always successful. I will feel much better when the myQuest app sends me a notification that my results are ready to view. Good or bad at least then I will know.

Until then I will just try to enjoy each day.

Dee
Every Day is a Blessing! 

Anxiety and Putting Things in Perspective

Last Wednesday's #gyncsm topic was Dealing with Anxiety. As usual when preparing for a chat I researched some resources and thought about my own personal responses to the questions we were asking. You can find the questions etc on this page.

When I was diagnosed I felt anxious about :
My port functioning correctly ( It worked for 9 years.) 
The chemo working 
Getting an infection when my blood counts were low (This never happened)
Waiting for CA-125 results
Waiting for CT scan results (Frequently called Scanxiety by patients and survivors.)
Having enough energy to get anything done around the house.

When my treatments ended and I was in remission I became anxious with every ache and pain in my abdomen and pelvis or with every upset stomach. Then I recurred and all the things that made me anxious when I was in treatment initially came right back to haunt me. And then of course I added a few new anxiety provoking things. My cancer recurred on my liver and spleen so I worried after surgery about not having a spleen. Then I became anxious when I experienced a severe allergic reaction to carboplatin and needed to be on taxol only. Would a single agent do the trick?

Over time I learned to deal with my anxiety although even while NED ( no evidence of disease) these past few years I still get anxious waiting for scan and  CA-125 results.

Then a few weeks ago something different happened. I hurt my knee. It was a weird pulling type of feeling and in a day or two it was back to normal. Then two weeks ago I felt it again and then last Thursday night after working with my dog outside - POW - the pain was so intense.

The next morning I couldn't put my left foot down without feeling a pain behind my knee. A quick trip to my primary care physician lead to a referral to a orthopedist ( which happens next week) for a possible torn meniscus. I also got instructions to rest it and ice it. The pain I could deal with by taking a few Advil. But what upset me most was that I had to cancel plans I had for the weekend. Canceling those plans raised the same feelings I had when I was in chemo and had to miss so many events with family and friends.

Then the "not knowing"anxious feeling came back too.
Not knowing what the actual diagnosis for my knee pain will be.
Not knowing what the treatment would be.
Not knowing how long it will take to heal.

I was telling my husband how I was feeling and he turned to me and said "You got through cancer treatments you can get through this too". Kind of put it all in perspective.

Dee
Every Day is a Blessing!

Science , Communities and Life with Cancer- The 3rd Annual AstraZeneca Bloggers Summit

On June 24th,  I attended the 3rd Annual AstraZeneca Bloggers Summit.  The day gave me an opportunity to meet other bloggers and to learn about social media and topics of interest to cancer patients and survivors.

What I learned at the Summit can be separated into three areas-science, communities and life with cancer.

The Science:

Photo provided by AstraZeneca

Deborah Torgersen-Paul, PhD (Executive Medical Science Liaison, AstraZeneca) presented the Evolution of Science and Understanding Cancer. Dr Torgersen-Paul began her presentation with a discussion of how the Human Genome Project changed our understanding of cancer.  She then went on to explained the role of oncogenes, tumor suppressor genes, cell death from chemotherapy and apoptosis( a cells normal death). She described driver mutations and how small molecules (such as Parp inhibitors) are used. She also discussed immunotherapy (which I heard a lot about while at the ASCO meeting this year). Some cancers don't stimulate the immune system as well as others so if we can find ways to boost our body's immune system the better we can destroy the cancer cells.  She also described work going on in immuno-oncology in which chemotherapy and immunotherapy are given together.  Lastly, she spoke of the research into circulating tumor DNA (ctDNA) , also  called a liquid biopsy,  and its role in screening for different cancers.

 After the presentation we took a tour of the Phase 1 laboratories at MedImmune where the Summit was held.

Oncology Bloggers at the Summit had the opportunity to see the MedImmune Phase1 labs.

Our Communities:

Photo provided by AstraZeneca

Ciaran Blumenthal (@momfluential) , a social media and marketing expert provided insight into "The Story of Us: Best Practices for Growing Communities Online". We ( the oncology bloggers)  were all at the summit because we share our story with a community of followers. Ciaran began by defining a community and the differences between online and "in real life" communities. She then talked about how characters can develop the community - content creators, experts, influencers and supersharers. She stressed the importance of the Hashtag in social media. From my own experience, the #gyncsm hashtag has been important in growing and sharing information among members of the gynecologic cancer community especially between our monthly chats. She then went on to discuss online platforms - blogs, Instagram, Twitter, YouTube, Pinterest and the strategies that can be used to grow a community. She stressed how content is key!

Life with Cancer:

Photo provided by AstraZeneca

Sage Bolte PhD, director of Life With Cancer,  presented the afternoon sessions geared toward different aspects of living with cancer.

Did you know that patients should be asked their distress level at each doctor visit? Studies have shown that 50% of all cancer patients experience a high level of distress ( emotional , mental, social, spiritual) during treatment. Lung, pancreatic and brain cancer patients report the highest levels. One in four cancer patients will experience depression. It has also been found that patients with lower quality of life experience more depression. When a person has situational depression it has been found that as the stressors patients experience subside so does the depression . When clinical depression occurs medication and therapy( cognitive or behavioral) may be prescribed.

Then Dr. Bolte talked about anxiety and fear.  I could definitely relate. To this day when I have to have a CA-125 test or CT scan my anxiety level shoots through the roof.  And it was good to see some of the things I use to calm down were listed in Dr Bolte's list of things to do to deal with anxiety.

• Stillness- prayer, mediation, allow to grieve, acknowledge ( I have a favorite mantra.)
• Motion- exercise, journaling, etc ( I love to paint when I am  anxious.)
• Ignore- this is ok for short periods of time ( When I learned my friend had passed last month I did choose to ignore it for a few hours. )

For the last session of the day, Dr. Bolte talked about Sexuality and Intimacy. Health care providers are as reluctant as patients to discuss the impact surgery and treatment have on the sexual life of their patients. A number of sexual challenges occur when a person has cancer:

• Cancer itself
• Psychological Distress
• Cancer Therapy
• Side Effects
• Alterations in relationships

One of the physical problems associated with the instant menopause many women enter into after gynecologic cancer surgery or due to cancer treatment is vaginal stenosis- a narrowing of the vaginal canal. There are a number of techniques ( dialators, lubricants ) that can be used when the condition develops.

As I was listening to Dr Bolte I noticed that the key word she kept using was communication. Cancer patients / survivors should communicate with their partner, spouse, family, friends and physician so everyone is aware of what you need and don't need. I can agree with that 100%.

One of the best parts of the Summit was being able to spend time with the other bloggers. Since I follow most of the bloggers online it was wonderful meeting them in person. Below is a list of my fellow blogger's names as well as links to their blogs and twitter handles. 

Katie Brown - Lung cancer
Website/blog: www.lungevity.org & www.iamkatiebrown.com 
Twitter @LUNGevity & @brownbeansprout
 
Dian “CJ” Corneliussen-James - metastatic breast cancer
Blog http://www.metavivor.org/blog/
Twitter @METAvivor

Katherine O'Brien - metastatic breast cancer
Website https://ihatebreastcancer.wordpress.com/
Twitter @ihatebreastcanc

Jennifer Campisano- metastatic breast cancer
Blog http://www.boobyandthebeast.com/
Twitter @Jcampisano

Alana Ray Osborne  - general cancer
Blog: http://www.powerfulpatients.org/blog/
Twitter @alanaray40

Thank you AstraZeneca and MedImmune for such an informative day!

Dee
Every Day is a Blessing!

The things that make you go Ugh!

In November I had a CA-125 blood test. It came back 21.  The previous result was 14. I went for a retest in December and it came back 20. So it looks like it is now stable but at a different level. Keep in mind that my CA-125 was 17 when I recurred on my liver and spleen in 2008 so of course there is concern that my number was trending up - even in the normal range.

I decided to look more closely at the test results sheet because the results were reported as normal < 35 and I had thought the normal for the tests I had been having was < 21. 

Here is what I found on the sheet: 
" THIS TEST WAS PERFORMED USING THE BECKMAN COULTER CHEMILUMINESCENT METHOD. VALUES OBTAINED FROM DIFFERENT ASSAY METHODS CANNOT BE USED INTERCHANGEABLY. CA125 LEVELS, REGARDLESS OF VALUE, SHOULD NOT BE INTERPRETED AS ABSOLUTE EVIDENCE OF THE PRESENCE OR ABSENCE OF DISEASE.
"

So I went back to the report from August 2014 and sure enough the  normal for the test was reported < 21. 

The report said:

" THIS TEST WAS PERFORMED USING THE SIEMENS (DPC) CHEMILUMINESCENT METHOD. VALUES OBTAINED FROM DIFFERENT ASSAY METHODS CANNOT BE USED INTERCHANGEABLY. CA 125 LEVELS, REGARDLESS OF VALUE, SHOULD NOT BE INTERPRETED AS ABSOLUTE EVIDENCE OF THE PRESENCE OR ABSENCE OF DISEASE."

Ugh!  "Look they went and changed the method!" Maybe that is why my CA-125 went up. The last time the method was changed the lab followed it using both tests for a few months to see how the results correlated.  I was in treatment then and we were following it closely to make sure the chemo was working.

Being the research "hound" that I am I got on Google and investigated how the tests are done and what the difference was between the two methods.

I learned that both tests -  are chemiluminescent immunoassay tests. They use a monoclonal anti-CA125 antigen alkaline phosphatase conjugate and paramagnetic particles which are then separated in a magnetic field. A chemiluminescent substrate is added and the light generated by the reaction is measured with a luminometer. The light produced is proportional to the concentration of CA-125 antigen. 

From what I read the Beckman test uses two mouse monoclonal antibodies while the Siemen uses one mouse antibody and one rabbit monoclonal antibody. I am going to assume that is was causes the difference in results since all the tests were being done by the same lab.

The up and down of CA-125 results causes enough anxiety without having a different  method which could be the cause of the change thrown into the mix. 

I probably should have looked more closely at the results when they first came in before getting nervous. 

I will be seeing my gyn onc in February and had a CT scan today so I think I will have my answer if it is something I should really worry about. 

Dee

Every Day is a Blessing!

 

It Was Only A...

Stomach bug.
I know that now but I still went through a few days of worry.

Last Friday I woke up tired. And I can't say that I had a sleepless night. Rather I felt rested but after a mid-day lunch with ladies from my community I came home and took a nap. Maybe I should say I went back to sleep for almost 2 hours. And I thought - gee I felt really tired right before I was diagnosed the first time. Did I think I had cancer then? No. But here I was tired and the first thing that came to mind was cancer. The second thing I thought of was the high pollen counts and how maybe I was tired due to allergies.

The next morning my stomach was upset and I  didn't feel like eating but I told myself "get up and out and you might feel better". And that is what I did even though I didn't feel energetic at all. We went to evening Mass and I ate breakfast food ( scrambles eggs / french toast) for dinner just because I didn't want to eat anything to heavy. But within an hour  I got what I call, "grumbly in my tummy",  and had some abdominal pain and cramping and felt even more sick to my stomach and ,well,  let's just say I visited the bathroom more times than usual.

Of course when I woke up on Sunday feeling full and not wanting to eat because I was nauseous my thoughts once again went straight to - bloating , feeling full quickly, upset stomach- the symptoms of ovarian cancer. Oh cr*p, I thought. Just when I thought I was out of the woods. Then of course I started calculating if it was a recurrence would I be done with treatment before my son gets married next year. And I started thinking about how I might have to cancel my attendance at MedX in September. See how my mind works and worries. I spent the day reading and my diet was tea and toast and a little plain pasta for dinner.

Monday I woke up feeling pretty darn good. And now, well,  I feel back to normal.

In a few online groups that I participate in the topic of worrying about a recurrence at the least bit of abdominal discomfort comes up quite frequently. So I know that other women go through the same anxious periods. So even five years out from finishing chemo for my recurrence my thoughts still go directly to another recurrence any time my stomach is upset. Not sure if and when these thoughts might go away forever but I am glad to put this incidence behind me. I just keep having to tell myself - give the symptoms time ( at least 2 weeks ) before I get too nutty.

Dee
Every Day is a Blessing! Blessed by a husband who deals with my recurrence fears with a smile.

Scars

Recently the #bcsm community discussed the invisible scars of breast cancer. It was an interesting and fast paced chat on Twitter. Later one survivor described her scars in a blog posted on Nancy’s Point  http://nancyspoint.com/breast-cancer-is-a-string-of-losses/ . I tweeted that gyn cancer survivors have invisible scars too and then decided to write about it here. 

Scars can be both visible and invisible. I have a number of visible scars. I have a scar on my neck from thyroid surgery in 1982. From my initial hysterectomy and debulking surgery in 2005, I have an eight inch vertical scar that begins at my belly button. From my liver resection and spleenectomy in 2008, I have two scars. One that travels 10 inches horizontally across my abdomen below my rib cage and another 4 inch vertical scar that meets up with the scar from my hysterectomy.The scars together have the shape of a capital letter T. 

These scars are starting to fade since my last surgery. But harder to fade are the scars that are invisible to others.These scars are very individual just as every woman diagnosed with ovarian cancer has a similar but different journey with the disease. Some of these scars can be physically painful while others can be emotionally painful. 

My first invisible scar is the neuropathy in my toes. Sometimes my toes are numb and sometimes my toes feel as if someone is sticking a knife into them. No one can tell when my toes are  bothering me but me, unless of course you have caught me taking off my shoe and rubbed my toes. 

I have trouble remembering the names of everyday things. Instead, I describe what it is I am talking about. I have written about this happening a few times in this blog. I read things and reread things and reread things again. I write entries for this blog and leave blank spaces because I can’t remember specific words. It takes me multiple tries to write what it is I want to say. ( Three days to draft, reread, rewrite this entry.) When I give talks I write the speech and then practice it over and over again. I am happy when my family can tell me the word I am missing and help me out.  But at times not remembering has brought me to tears.  I am sure that the invisible scar of chemobrain as survivors call it or cognitive impairtment as professionals call it  is due to the life-saving 16 chemotherapy treatments that have put me in remission. 

Instant menopause has brought it’s own set of invisible scars. Sure I was 50 and not having another child when my ovaries, uterus etc were removed but that doesn’t mean  the physical changes that have occurred due to the surgery are any less painful. Some women in their 20s and 30s are dealing with loosing their fertility. Some of us are experiencing hot flashes sooner than expected and some of us are dealing with issues that are difficult to talk about even with our physicians. 

Then there is the invisible scar due to worrying about a recurrence or waiting for the other shoe to drop. This scar is invisible to others most of the time. It is my own personal worry. Is that gas or bloating? Is that pain under my ribs from scar tissue or is It back? Why am I urinating more frequently? Most times I can talk myself back from the edge by telling myself that I have a plan which includes seeing my doctor frequently enough that if It does come back we will treat It quickly. Sometimes this scar does become visible as “scanxiety”. I am not a pleasant person to be around when it comes time to have a CA-125 blood test or a CT scan. Until the results are in and I get the all clear for 4 more months I am a nervous Nellie. 

I also have an invisible scar from loss. Being in the club of ovarian cancer survivors automatically brings along with it loss.  Support groups and involvement in local ovarian cancer organizations has afforded me the opportunity to share this journey with some pretty incredible women. We have helped each other along the way with hugs, phones calls, e-mails and laughs. But along with this joy there is the pain of their loss. Every death takes it toll. Would I rather to have never met these woman? No not at all. It was wonderful having them in my life. 

Those around us may think that since we aren’t in active treatment cancer no longer impacts our lives. But for those of us living with a cancer diagnosis and treatment may be sad or scared or nervous long after. We may put on a happy face to our family or friends because we don't want them to worry. Sometimes we can deal with these scars ourselves and sometimes we need help from support groups, social workers or therapists. We are not weak when we reach out for help  but rather we are exhibiting strength in recognizing these invisible scars. 

Dee 

Every Day is a Blessing! 

Secondary Cancers and Recurrent Cancers Do Make Us Worry

It was a busy weekend and I have gathered a number of different ideas for blog posts.  I will begin with some comments prompted by an article in the New York Times Well section. The article by Steven Petrow, a testicular cancer survivor,  was titled "New Cancer Threat Lurks Long After Cure". You can visit here for the entire article.

The article began with a discussion of Robin Roberts latest diagnosis of myelodysplastic syndrome a secondary cancer most likely caused by the breast cancer chemotherapy treatment she was given. I know a number of survivors who have had multiple cancers. And studies have shown that treating cancer with chemotherapy or radiation can lead to other cancers. This is especially true of child or young adult survivors.  But as the article stated with 14 million cancer survivors in the US and since those diagnosed with cancer  are living longer, the threat of a secondary cancer is real.

My concern is not so much for a secondary cancer but like so many ovarian cancer survivors my concern is a recurrence of the same type of cancer. Ovarian cancer is one of those cancers that is, for lack of a better word, is notorious for coming back. I have had one recurrence already in 2008, two and a half years after finishing treatment for stage III B ovarian cancer. My CA-125 was normal and it was a CT scan that picked up the growths on my liver and spleen. Do I worry that it might recur again?  Nope. Honestly? Yes, I do. Do I think about it all the time? No.  I've learned over the years, a number of good techniques to get me through those tough times. My Gyn-Onc and I have put together a good follow-up plan of check-ups and CA-125's and CT's to catch it early.

So do I worry or think about other cancers?  Not too often. Do I have an annual mammogram? Yes, I do . Do I worry about going for a mammogram like I do a CT scan or the CA-125 blood test. No. Not sure why but Breast Cancer does not scare me. If I could handle treatment for ovarian cancer  twice I know I can deal with any treatment breast cancer could require of me. On a good note, I just went for my annual mammogram and it was clear.

Mr Petrow brings up in his article that 58% of cancer survivors suffer from anxiety, stress, depression and post traumatic stress syndrome. I applaud Mr Petrow for bringing that number to light. I was dealing pretty well until the recent loss of a friend's niece and  two wonderful women from my support group within months of each other. Over the years I grew to know these women for more than their cancers but their love of children,  their families , God, and the simple things of life like holding hands. So after 6+ years as a cancer survivor, I needed to find some extra support. And I did. I feel much better and feel I am getting back to normal - another new normal.

So if you are a survivor do not be shy about talking to your physician or nurse about what you need physically and emotionally to make this journey  smoother.


Dee
Every Day is a Blessing!

ASCO - Patient and Survivor Care

Part four in my ASCO report. 

I spent time chatting with researchers and reading many posters related to patient survivorship issues at ASCO. It pleased me that researchers were spending time looking at quality of life, anxiety , sexual function , support efforts, hope, obesity and improving side effects. 

Obesity

The researchers looked at obesity and survival in ovarian cancer patients. They compared 130 obese vs 240 non-obese women with the disease. The time to recurrence was identical at 15 months in both groups. They concluded that obesity does not impact time to recurrence. (Abstract 5049)

Quality of Life/ Hope 

This longitudinal study by researchers from the Cancer Treatment Centers of America studied whether changes in quality of life could predict survival in ovarian cancer patients treated in an integrated model. There were 137 patients in the study and included newly diagnosed and those with recurrences. Quality of Life questionnaires were completed at initial visits and at 3 months of treatment. Preliminary evidence showed that patients with improved quality of life at three months had significantly longer survival. (Abstract 5049)

Researchers from Germany used a questionnaire to study sexual function in ovarian cancer patients. The study included over 700 women. Half of the women reported they were not sexually active. Results showed that sexual activity was impaired in women with ovarian cancer but that it did not impact their quality of life. The researchers concluded that a shift in priorities regarding anxiety due to cancer survival may have impacted the results.(Abstract 5051)

A longitudinal study by MD Anderson researchers studied ovarian cancer patients at MD Anderson, an academic cancer center and a community hospital. Results showed that underserved patients in the community hospital setting had poorer quality of life and that the future depended on “luck” or “others”. than those at the cancer centers. ( Abstract 9134) This is the poster of the work Dr L Ranondetta described at the Grand Rounds at St Peters University Hospital in May.

The Lance Armstrong Foundation researchers fielded a LiveSTRONG Survey for People Affected by Cancer. The survey looked at post treatment concerns and treatment summaries. Results showed that only one third of the patients received a treamtnet summary. Those patients that did receive a summary had a variety of positive outcomes. ( Abstract 9136)

Therapy management/ Anxiety

A German Study surveyed 676 ovarian cancer patients  regarding their expectations and needs about their therapy and doctor /patient communications. They found there is a high need of patients to discuss all details of treatment options and clinical management. the three most important aspects were “More time for discussion”, “therapy should not lead to hair loss” ad “therapy should be more effective”. 

(5044)

Side Effects/ Hair loss

This prospective study of chemo induced hair loss with and without scalp cooling was done by researchers in Canada. Researchers studied 130+ women with and without a scalp cooling device.  The study used  a survey and photos were taken before treatment,at 3 cycles and at the end of treatment. The result showed 49% of women who used the scalp cooling described their  “Success” as none or little hair loss . While 4% of women who did not use the scalp cooling had “Success”.   Hair stylists reported “success at 34% for those using the cooling device (Abstract 9138)

Dee

Every Day is a Blessing!

So about that CA-125

This past week I wrote about going for my CA-125 blood test. Waiting for the results is always nerve wracking for me even after all these years.

The CA-125 is a biomarker protein that may be elevated in the blood of women who have ovarian cancer. But the CA-125 is not specific to ovarian cancer since it can be elevated for reasons other than ovarian cancer such as diverticulitis and other abdominal inflammations.

When I was first diagnosed with ovarian cancer ( Stage 3B) my CA-125 was 177. Yes, it was above the normal guideline (0-21 and now 0-35 )but so much lower than other women with the same disease load whose numbers were in the thousands. When I recurred my CA-125 was 16 up from 9. And, yes, that would be a normal reading. At that point I had a diseased spleen and tumors on the surface of my liver. So my doctors and I don't necessarily look at the absolute value of the CA-125 result but we are looking at the trend , even if the results are in the normal range. We have also agreed that if I am asymptomatic she will not treat me because of a rising CA-125 unless there is evidence on a scan.

In December of 2010 my CA-125 was 10 and during 2011 my results were between 10 and 13 until December when it shot up to 16.7. Uh Oh it is rising! Of course the fact that I could be recurring entered my brain but there was no way that was going to stop me from having an awesome Christmas and New Years. It would have to wait.

I had my follow-up blood test on Thursday. My nurse e-mailed me on Friday that the result was 11. Right there between 10 and 13. I'm not sure why there was that jump in December. But I am happy with the 11 . And I'll be happy going in to see my gyn-onc later this month knowing that it is 11.

Dee

Every Day is a Blessing!