Small Cell Ovarian Cancer Hypercalcemic Type - Survivor
Hello out there. I'm new here... but I probably shouldn't be. I was diagnosed with small cell ovarian cancer hypercalcemic type stage 3c last year around this time (March timeframe). It is a very rare cancer with a very low survival rate: 10% chance to make it to 5 years.
----------------------------------------------My story: I had an IUD (paragard) placed sometime in 2013. It just never seemed to work the way it was supposed to; I had an almost constant period and a bit of abdominal pain relatively regularly. Last year in February, I had noticed pressure in my abdomen while running (I am active duty Air Force, so I was training for a PT test) and it felt as though one of my organs had come loose and was bouncing around in there. I was getting fat, like I was pregnant or something...
I had also been feeling sick and had a hard time eating much. I had no idea that these were all signs of ovarian cancer at the time... I wish I would have acted sooner.
I went back to my gynocologist on base and she decided that we would remove the IUD. Before this I had gone to the doc a few times, complaining of all these symptoms... I was just sent home for the duty day and there was no follow up on the matter. My GYN though, she actually had some concern, so she ordered a bunch of tests and an ultrasound. I completed the ultrasound and they found a potato sized mass (about 13x11x15cm): my extra organ; the one bouncing around while I was running... the one that made my pants so tight...
The next few weeks were kind of a blur. I waited for an appointment on the army base that was set for about 3 weeks after the ultrasound. In the meantime, symptoms got worse and I ended up at the ER on a friday. I ended up having the mass removed that next monday and it was the size of a volley ball... It had grown from potato to volley ball in 2 weeks...
I recovered from surgery and awaited my results. My new GYN oncologist called me back about 2 weeks later and said I needed to get a port put in right away because were would start chemotherapy in three days. I had been diagnosed with SCOC stage 3c... I was 26 years old.
So, the war began and after about 6 months of aggressive inpatient treatment (I won't go into the chemo drugs) I completed 5 chemo treatments of 6 drugs each time. I finished in July of last year (2015). There have been no signs of recurrence. My hair has grown back and everything seems normal...
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(((Sorry for the long story there)))
Anyway... I guess why I finally decided to come here is that I am having a hard time dealing with the prognosis. The 10% chance of making it to 5 years... It's too real. I wanted to be a geologist one day... I am being medical boarded and separated/retired from the AF.
I had heard of one or two more patients with this diagnosis lately and I want to help them... I'm not sure how to help because I don't know them, but I want to help. But I also realized that I need to get help first. I am trying to be optimistic, but my mental health is off. I have PTS about it a lot.
So, if anyone can give me some words of wisdom from a fellow cancer survivor, that would be awesome.
-CaptainMorwen
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Captain, any diagnosis of
Captain, any diagnosis of cancer is hard to wrap your mind around, and to be told something so rare? It ain't easy! I will tell you what one of my favorite women here used to tell us, "You are statistic of one". If you feel good go out and LIVE. Find someone to talk to for your PTS, none of us here are trained therapists, just a lot of people kicking the can down the road. It is a great place to vent (people who TRULY understand), listen, and ask questions.
I am so sorry you have had to find us, but you are welcomed with open arms.
PS - I think you should study geology if that is what you want to do.
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Hi Captain Morwen
Hi, I read your story and I must say its sounds almost identical to my sisters - She is 25 and a few weeks ago has a mass removed from her ovary as well as her ovary. It all seemed like she was going to be fine but we just found out that the cancer has spread to her lymph nodes. I guess all i wanted to know is how youre doing? She is about to start her Chemo and I think my family are avoiding doing any research of what to expect because we want to stay optimisitc. I just want to know what to expect. I am at University right now away from home so I am not seeing my sister very much although i go home as much as possible. If i know its going to get difficult in the next few years I will consider move back home and either deferring a year or doing work from home (my uni is about an hour away so it is possible). I know this is a year after you made your original post but it would be great to talk to you if youre happy to do so. Thank you
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Airesgirl~In case U don't reach Morwen I'm sending U some info
Hello there "Airesgirl"
You've directed your reply specifically to Captain Morwen. However, since she hasn't posted here since October of 2016, you might want to send her a private e-mail as well. When someone sends me a private e-mail, CSN sends me a notice to my G-Mail account telling me that I have mail from this site. So I suggest you click on her name in the blue block and up will come her "about me page". There you will see that you can send her a private message. I know that many people read this site although they all are not posting here publicly.
Speaking of your sister, you write, “She is about to start her Chemo and I think my family are avoiding doing any research of what to expect because we want to stay optimistic. I just want to know what to expect.” Your other family members may not wish to conduct extensive research, but when dealing with a cancer diagnosis of any kind, “ignorance isn’t necessarily bliss”. Although I’m not happy about hearing that your sister has been diagnosed with Ovarian cancer, I applaud you for wanting to research OC for yourself. You are wise to do so.
Obviously there are many stages and types. I'm of the opinion that "if I don't ask, I won't know." And in that situation people can often conjure up much worse possibilities that may actually exist. I also know that doctors are busy people and will usually be glad to answer your questions IF YOU ASK. With that in mind, if I were you, and just in case "Captain Morwen" isn't able to correspond with you at this time, you can still start your own search. And so below my name will be some reputable sites that will give you a good understanding of what can be involved in dealing with Ovarian cancer. I find that in one's family, there are different personality types—some are inquisitive while others wish to hide their head in the sand, and hope everything will come up roses. And I perceive that you are both compassionate and inquisitive, as you have time I believe you will benefit from reading about the experience of others who have been diagnosed with Ovarian Cancer. Now I’m not certain that your sister has the exact stage as that of Capt. Morwen, so I will just share some info with you.
Presently, until you see exactly the course that your sister’s cancer takes, personally, I think it would be premature to change your educational plans at this time. It’s just good to know that you are close to home. Since you say that your sister’s cancer has already spread to the lymph nodes, it would certainly seem chemo will start shortly. In my case, I had pre-op (neo-adjuvant) chemo consisting of Carboplatin & Paclitaxel (Taxol). I’ve included a reference below so that you can research the particular chemo drugs that she is, or will be taking. Chemocare.com is one of my favorite “go-to” sites to learn about different kinds of chemo, its intended purposes, and side effects. And I certainly hope she will have a “medi-port” implanted prior to the treatments. Not that chemo is ever pleasant, but it makes the treatment sessions more tolerable.
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“What is a mediport?- A port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein.
Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times,
usually with less discomfort for the patient than a more typical "needle stick".
Ports are used mostly to treat hematology and oncology patients. The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free…”_____________________________________________________________________________________________________
And it would be good to be seen by a Gynecologic Oncologist if she has not done so already. They have extensive training in the female reproductive system.
I do hope that she has had a SECOND opinion. Oft times it differs in some way from the 1st opinion. It can range from “refining” the first opinion to a totally different diagnosis and method of treatment. Note the April 4, 2017 article below from Mayo Clinic in Rochester, MN, one of the very top hospitals in the United States, in which they state that 88% of the diagnoses differ in some way from the 1st opinion!
In my case, my first diagnosis was a rare one. A CT scan performed at my local Emergency room revealed Peritoneal Carcinomatosis. Multiple tumors were scattered throughout the abdominal fluid in my Peritoneal Cavity. My 2nd opinion at the University of Pittsburgh Medical Center (UPMC) included exploratory surgery. Cancer was found in my ovaries as well. The road has been difficult at times, but I have lived almost 5 years longer than doctors first envisioned. I say this in hopes that it will give you some encouragement. As I’ve stated often, I’m encouraged and take heart in what the Psalmist David says in Psalm 139. Paraphrased he said, “Lord I can’t go anywhere that You’re not already there. You even saw me when I was being knit together in my mother’s womb and in Your Book all the days of my life were written when as yet there were none of them.” So when I’m tempted to worry about the “future what-ifs”, this Psalm comes to mind, and I find comfort in knowing that I’m not going to live one day longer or die one day sooner than the life-span designed for me. So it’s best to not dwell on things that we cannot control, but it’s smart to know as much as we can about our “present state.”
Often I’m prone to wonder about life, and what I would have done, “if I had only known!” But if I were to have been given a “long-distance” preview of what was going to happen to me in the “future”, I would never be able to enjoy the “present”. (And in hindsight, I’m glad to know that some of the things I wished for never came true. Take for instance, some of the boys I thought I was so madly in love with. Now I’m so glad those relationships fizzled out!
Now one of the dreams was never going to happen, but I was wild about Elvis. Now that was a fantasy!) But back to the real world. I now see that I would never have met the man I’ve now been married to for 55 years, had I not “kissed those other dudes” goodbye! So there are some good benefits to hindsight.But back to my conversation specifically about Ovarian Cancer. In my case the treatments are the same for Peritoneal Carcinomatosis and Ovarian Cancer, except in my case, it was Stage IV from the very beginning. That’s why it is so important for your sister to seek a second opinion, so that she will receive the very best treatment possible. All Ovarian cancers are not Stage IVs, but since you say it is in her lymph nodes—how many nodes are affected, their location and how near they are to other major organs will play a role in staging the cancer.
So while you addressed your comments to Captain Morwen, I want to be certain that you begin your search for information from reputable sources. And to be perfectly honest, I am hoping that your sister has not been diagnosed with the same kind of Ovarian cancer (Small cell carcinoma of the ovary-hypercalcemic type (SCCOHT), but just in case I have placed two references at the bottom dealing specifically with this type. And I’m hoping that if Captain Morwen is still reading on this site that she will answer you as well. No matter the type of OC that your sister has been diagnosed with, the links provided below will be of help. The information is not something that can be “absorbed” in one night, but it will be a big help for you to begin your own research.
I’m in agreement with “BettyBoop”. It has just taken me a bit longer to say it! We wish for your sister the very best possible outcome. We are here to help if we can.
Most sincerely,
Loretta
(Peritoneal Carcinomatosis/Ovarian Cancer Stage IV) diagnosed Nov. of 2012- Pre-op chemo, Carboplatin/Taxol, then Cytoreductive Surgery (CRS) July 1, 2013, targeted radiation (Cyberknife) in 2014, more of same chemo in 2015 and 2016)
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2. http://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/
Mayo Clinic researchers demonstrate value of second opinions - April 4, 2017
ROCHESTER, Minn. — Many patients come to Mayo Clinic for a second opinion or diagnosis confirmation before treatment for a complex condition. In a new study, Mayo Clinic reports that as many as 88 percent of those patients go home with a new or refined diagnosis – changing their care plan and potentially their lives. Conversely, only 12 percent receive confirmation that the original diagnosis was complete and correct.
These findings were published online today in the Journal of Evaluation in Clinical Practice. The research team was led by James Naessens, Sc.D., a health care policy researcher at Mayo Clinic.
WHY GET A SECOND OPINION
When people are sick, they look to their doctor to find solutions. However, physicians don’t always have the answers. Often, because of the unusual nature of the symptoms or complexity of the condition, the physician will recommend a second opinion. Other times, the patient will ask for one.
This second opinion could lead to quicker access to lifesaving treatment or stopping unnecessary treatments. And a second opinion may reduce stress in a patient’s extended family, when they learn the new diagnosis does not carry dire genetic implications. These scenarios can result from diagnostic error.
ODDS ARE GOOD THE DIAGNOSIS WILL BE ADJUSTED
To determine the extent of diagnostic error, the researchers examined the records of 286 patients referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester over a two-year period (Jan. 1, 2009, to Dec. 31, 2010). This group of referrals was previously studied for a related topic. It consisted of all patients referred by nurse practitioners and physician assistants, along with an equal number of randomly selected physician referrals.
The team compared the referring diagnosis to the final diagnosis to determine the level of consistency between the two and, thus, the level of diagnostic error. In only 12 percent of the cases was the diagnosis confirmed.
In 21 percent of the cases, the diagnosis was completely changed; and 66 percent of patients received a refined or redefined diagnosis. There were no significant differences between provider types.
“Effective and efficient treatment depends on the right diagnosis,” says Dr. Naessens. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling ─ not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we assume are not being referred at all.”…”
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3. http://www.lifescript.com/doctor-directory/specialty/gynecologic-oncology.aspx?gclid
Here is a site to find gynecologic oncologist by state.
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4. https://www.castleconnolly.com/doctors/specialty/gynecologic-oncology.cfm
“…Finding the best gynecologic oncologists…Our method for compiling our doctor lists uses four main tactics: peer nomination, research, review, and screening. By searching our database for the top gynecologic oncologists near you, you will be provided with information that includes the doctor's education, training, and special expertise…”
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5. http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer
6. https://www.oncolink.org/cancers/gynecologic/ovarian-cancer/all-about-ovarian-cancer
These are two excellent links for Ovarian Cancer.
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7. https://www.cancer.gov/types/ovarian
Ovarian, Fallopian Tube, and Primary Peritoneal Cancer—Patient Version
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8. https://www.cancer.gov/types/ovarian/hp
Ovarian, Fallopian Tube, and Primary Peritoneal Cancer—Health Professional Version
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Every type of chemo currently being prescribed by physicians can be found here.
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10. http://smallcellovarian.org/assets/sccoht-paper.pdf
August 2015--Small cell carcinoma of the ovary-hypercalcemic type (SCCOHT):
A review of 47 cases
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11. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4795582/
“Ovarian small-cell carcinoma hypercalcemic type successfully treated: a case report and literature review…”
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12. http://meetinglibrary.asco.org/content/146159-156
“Prolonged survival of small cell ovarian cancer-hypercalcemic type (SCCOHT): Should radiotherapy play a larger role?
Subcategory: Ovarian Cancer -- Category: Gynecologic Cancer
Meeting: 2015 ASCO Annual Meeting -- Session Type and Session Title:
This abstract will not be presented at the 2015 ASCO Annual Meeting but has been published in conjunction with the meeting…”
__________________________________End of references______________________
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I am so sorryAriesgirl said:Hi Captain Morwen
Hi, I read your story and I must say its sounds almost identical to my sisters - She is 25 and a few weeks ago has a mass removed from her ovary as well as her ovary. It all seemed like she was going to be fine but we just found out that the cancer has spread to her lymph nodes. I guess all i wanted to know is how youre doing? She is about to start her Chemo and I think my family are avoiding doing any research of what to expect because we want to stay optimisitc. I just want to know what to expect. I am at University right now away from home so I am not seeing my sister very much although i go home as much as possible. If i know its going to get difficult in the next few years I will consider move back home and either deferring a year or doing work from home (my uni is about an hour away so it is possible). I know this is a year after you made your original post but it would be great to talk to you if youre happy to do so. Thank you
I am so sorry to hear of you fight this cancer. I don't have your type but I do have one that is rare.
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I am still alive and kicking.
I was diagnosed with this cancer a few years ago. I am still alive and kicking. Please feel free to message if you have questions.
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