Hi there Jamie

My first “opinion” is that you DEFINITELY need a second opinion.  Although I’m only a Stage IV Ovarian cancer patient, and have read quite a few letters from ladies on this site, you are very young at age 19 to be having this problem.   It’s hard to believe that the lymph nodes that were removed during your surgery were not biopsied. 

Furthermore, I’m certain that age 19, I would not have had the foggiest notion of what to ask about something I never expected to have.  Your ovarian cancer is too big of a job for a primary care doctor to handle.  You should be being treated by a gynecologic oncologist.  They are especially trained to treat this type of cancer.

Furthermore, if you’re not sure of what is going on, and you’re not, but smart enough to know “something isn’t just quite right here”, you should follow your instincts.  You should not be worried about “offending” your doctor by asking for a second opinion.  A doctor that is confident of his/her abilities should never discourage a second opinion.  If they are, then that’s a definite clue that you need more input from another medical facility. 

Normally, lymph nodes removed during surgery are sent to Pathology for testing.  If  those nodes prove to be cancerous, then normally “adjuvant” chemo is prescribed.  Neo-adjuvant means “before” and “adjuvant” means “after”.  For instance I had neo-adjuvant chemotherapy of Carboplatin and Paclitaxel (Taxol) chemo before I had Cytoreductive Surgery (CRS).  Now I won’t go into that kind of surgery here, because that is not the same kind of surgery that you had, nor do you need to know about it presently, thank the Lord. 

My first diagnosis of Peritoneal Carcinomatosis was determined by a CT scan at my local emergency room.  As soon as I learned about the nature of that cancer, I immediately started looking around for an expert in this kind of cancer.  I had exploratory surgery at the University of Pittsburgh Medical Center within 3 weeks.  A PET scan was performed there as well and cancer was also detected in my ovaries.  But enough about my cancer.  I tell you that to let you know that you should follow your conscience and have a second opinion.  If this were me, I would be very upset that my doctor had “left me in the dark.” 

And so I say, definitely you are in need of a second opinion.  Now am I to assume that your gynecologist performed this surgery, and feels nothing more needs to be done.  If so, he/she may be reluctant to give you a good reference.  Just giving you a name of another professional in their same medical facility would not satisfy me.  I would want to go to a specialist, and a different medical facility.  Do you live near a well-known medical facility noted for treating Ovarian cancer patients?

Most insurance companies will pay for a SECOND opinion.  I hope you have insurance that will allow you to go elsewhere.  If you tell us what section of the country or city you live in, we may be able to help you find a qualified doctor.  Naturally, you should check to see if the facility you wish to go to for evaluation requires a “special referral.”  I went to UPMC.  My doctor, Dr. David Bartlett, did NOT require a special referral.  But if they need one, your doctor should be quick to honor your request.  Now I will say at a young age, you may not be as “forceful” as you will learn to be as time goes on, and experiences in life will soon lead you to know that often you have to be your own advocate.  Now I’m 78, and we would say, “You may have to learn to put your foot down!”  None of us like to learn our lessons in the school of “hard knocks”, but believe me, you will never forget what you learned. 

But for now, I “second” your woman’s intuition that more needs to be checked out given the tumors found in pelvic washings. 

As for genetic testing, my oncologist checked with my insurance company to get prior approval for that.  Although there were 20 major cancers found on my mother’s side of the family, I was not found to be genetically disposed to have cancer.  (My sister had Breast Cancer.)  I would have thought that certainly I would have been tested as positive.  They took a sample of my blood, and queried me about what type of cancer, and which relative it was—cousin, aunt, sibling, etc.  So you certainly want to inquire about that but at age 19, you’re probably not “rolling in dough” that you want to fork out at this time.

So Jamie, I’m both “sad and glad” that you wrote us.  Sad to know you’re having problems at such a young age, and glad that you’re smart enough to “not let this ride” and just “settle” for what your present doctor thinks.  It’s your body—your life—your future!  Please give us an update when you make a decision, or write again if you have more questions.

Love,

1.  http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/stages-and-grades

Here you will see that there are different types of Ovarian cancer and different grades.

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2.  http://news.cancerconnect.com/cancer/newly-diagnosed/getting-a-second-opinion/

“What is a Second Opinion?

A second opinion is a review of the cancer diagnosis and the treatment recommendations of the physician who is treating the cancer by another, independent physician. Either the patient or the primary physician can initiate the process of getting a second opinion. Usually, patients obtain a second opinion after being referred to a second physician or to a special team of experts in a cancer center, called a multidisciplinary team. This doctor or team of doctors will review the following:

• Pathology report (how the cancer looks under the microscope),
• The extent of cancer
• The physical condition of the patient
• The proposed treatment

The doctor(s) then communicate their opinion regarding treatment to both the patient and the primary physician.

Second opinions are more likely to be comprehensive, or inclusive of every possible perspective, when performed in a cancer center with a multidisciplinary team, which usually includes surgeons, oncologists, radiation therapists, and sub-specialist oncologists.

Why Do I Need a Second Opinion?

A second opinion is part of the education process that is critical for cancer patients. The treatment of cancer has evolved tremendously in the recent past. As a result, many cancers are now more treatable than they once were, especially if the appropriate initial treatment is selected. In order to receive appropriate treatment, patients must understand the type of cancer they have and the treatment options that are available. However, there are also many more options for treatment and these options are more complicated than in the past.  For these reasons and others, it is advantageous to seek more than one opinion about how your cancer can be treated.

Also, a second opinion provides the opportunity to get information from someone other than the physician who will be directing treatment, which is usually the main source of information for most patients. Second opinions are a common practice in any area of medicine that is complex and that has multiple treatment options available.

Is Getting a Second Opinion Considered “Bad Etiquette”?

Patients, relatives and friends need to keep in mind that second opinions are a normal part of cancer management and they should not be concerned about hurting the feelings of the primary physician. If you decide to obtain an independent second opinion, it is important to communicate with the primary physician not only to obtain needed information for review, but also to keep the treating physician informed. Most physicians welcome the opportunity to have another consultant review and approve their care decisions, or perhaps suggest another treatment that may be better. There are instances when a patient may disagree with their physician and will need to change physicians, but this is not the main purpose of a second opinion. Most of the time, you simply need to make sure you are getting the best advice…”

4.  https://ocrfa.org/patients/about-ovarian-cancer/treatment/staging-and-grading/

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5.  https://www.cancer.org/cancer/ovarian-cancer.html

Ovarian Cancer

“If you have ovarian cancer or are close to someone who does, knowing what to expect can help you cope. Here you can find out all about ovarian cancer, including risk factors, symptoms, how it is found, and how it is treated…”

_______________End of references for now_______________

Jamie4304 said:

Thank you so much

Loretta,

I really appreciate you taking the time to give me as much information as you did! Like you said, I am really young and have never been exposed to this sort of situation, so I have no idea where to start or what to ask. Most of the information I provided above was not even told to me by my oncologist, I had to read through my own medical records.
She never elaborated about my diagnosis or the surgery at any point of time, leaving me to have to release my medical records and read them over myself.

I'm seeing a specalist who is a gynecology oncologist, but I still feel uncomfortable with her final decision of treatment: routine blood tests every 3 months.

My primary was the only doctor who seemed more concerned about my illness than my actual oncologist -- she is the one currently ordering CT scans of my lungs. 
My oncologist now works at Women's and Infants in Rhode Island, but I'm thinking about trying to get a seceond opinion at Beth Israel in Boston.

 

My dear Jamie

Please do more than “think about it”.  Knowing what I know, a blood test every 3 months would NEVER be acceptable given what you have told me.  I’m surprised and disappointed that your oncologist is not more aggressive!   I visit my oncologist monthly, and I have a blood test monthly!  There is a tumor marker for Ovarian cancer that is called a CA-125 count.  Anything under 35 can be considered “normal”, that is unless you’ve already been diagnosed with Ovarian Cancer.  My oncologist keeps a regular check to see if that number continues to increase incrementally.  If so, that is a cause for concern.  But in your situation, if there has been no testing of lymph nodes for residual cancer, a simple “blood count” for maintenance purposes is “insufficient!” 

You definitely need to look elsewhere for a 2^nd opinion.  I will say this.  If there has been no testing of lymph nodes for residual cancer, and there is always that possibility, time is of the essence.  Cancer cells can multiply and divide quickly.  For instance each cancer cell will divide, and replicate itself, so that one will ultimately become two.  Then those 2 cells will divide and become 4.  So you are smart enough to “do the math”.  So 4+4 more = 8 …8 X 2= 16… 16X2=32…you get the picture.  Cancers do not just disappear on their own. 

Seemingly, your primary care doctor is exhibiting more wisdom than the gynecologic oncologist that you reference.  I’m quite surprised at the “casual” approach that your current oncologist is taking. 

You’ve heard the question, “Do you know the difference between “major & minor” surgery? 

The answer:  “Major if it happens to me—minor if it happens to you!” 

 If this oncologist should ever have a daughter with a diagnosis like yours, no doubt there would be “no stone left unturned” to be certain that all the “I’s” were dotted and all the T’s were crossed.  It would be MAJOR.  She would be in touch with every specialist she thought necessary to be sure her daughter had the best of care!

Here is the web link to explore at Beth Israel in Boston.  I imagine this is the medical facility  you’re talking about.  If they require a special referral, I would think that your primary care physician would be quite pleased to know that you’re taking matters into your own hands and contacting Beth Israel. She would certainly give you that referral.   

Like I say, it’s YOUR LIFE—and it’s MAJOR!  Once a cancer diagnosis has “your name” on it, you just can’t wait 3 months and “hope” everything will be okay and that things will just eventually “get better”.  They won’t!  You have to be the aggressive one. 

So please, please contact Beth Israel and make an appointment ASAP!

Love Loretta

(Old enough to be your grandmother and treating you like I would my only granddaughter  who is now 25!)

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 1.   http://www.bidmc.org/Centers-and-Departments/Departments/Cancer-Center/Gynecologic-Oncology-Program/ForPatients/FAQs-About-Ovarian-Cancer.aspx

“FAQs about Ovarian Cancer

Contact Information

Gynecologic Oncology
Department of Obstetrics & Gynecology
Beth Israel Deaconess Medical Center
Shapiro Clinical Center, 8th floor
330 Brookline Avenue, Boston, MA 02215
Phone: 617-667-4040
Fax: 617-667-4747

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 “Ovarian Cancer Treatment & Diagnosis

•  What is epithelial ovarian cancer?
• Who is at risk for epithelial ovarian cancer?
• What are the early warning signs of ovarian cancer?
• How are patients usually diagnosed with ovarian cancer?
• If surgery is performed to remove an ovarian tumor, what needs to be
  done next?
• What type of chemotherapy is used to treat epithelial ovarian cancer?
• What is the effectiveness of chemotherapy for ovarian cancer?
• What types of clinical trials are available to ovarian cancer patients?...

If surgery is performed to remove an ovarian tumor, what needs to be done next?

Approximately 30 percent of ovarian cancer patients will be diagnosed with stage I or II tumors, and 70 percent of ovarian cancer patients will have stages III or IV disease. Most patients with epithelial ovarian cancer have tumors that cannot be completely removed by surgery alone.

 Even in situations where all of the obvious tumor has been removed, there are often microscopic areas of tumor remaining which can grow back again if not treated.

That is why the majority of patients with ovarian cancer will require some form of chemotherapy after the operation in an attempt to destroy any remaining tumor cells.

 Under rare circumstances, certain patients with early stage disease may not require further treatment. However, only your oncologist can advise you as to whether this approach is appropriate for your situation…”

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Get a second opinion.  NOW.  it is absolutely your right.  Any reputable physician is not offended by that and if they are, then you need another doctor.  Immediately.  No one knows everything and people get stuff wrong.  None of this is black and white.