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Second opinion? How do you know when you should seek one?

seatown's picture
seatown
Posts: 212
Joined: Sep 2012

Got the results from my latest CT scan last week.  Long story short, it shows “something” on my spleen. My gyn/onc surgeon thinks it may be a recurrence of my primary peritoneal cancer (which is treated exactly the same as ovarian cancer). My CA-125 number has been slowly rising since summer & is now 44. The surgeon presented several options but recommended a 90-day period of “benign neglect” with no monitoring during that time, but with the addition of the oral drug Arimidex. Have already been on Carboplatin/Taxol in 2012 with good results. Then last year, after positive biopsies, had Carbo/Taxol again with the addition of Avastin (which apparently didn't work for me). I chose the recommended new option but worry that I should seek more aggressive treatment. Reading the literature about recurrences scares me, although I know many people are in far worse situations. Been thinking about seeking an appointment with a leading figure in gynecological cancers—not that my present docs aren’t highly regarded. How do you decide what to do?

Thanks in advance for your thoughts!

Lisa 00
Posts: 108
Joined: Jul 2009

You said you were worried.  Personally, I would seek a second opinion if I had any sort of worries, doubts, felt I wasn't getting answers to my questions, or felt that other possible treatments aren't being considered by my doc. 

You are entitled to know all of your options as well as the pros and cons of each.

Good luck, all the best, and keep us updated as to how it's going!!

Lisa

scatsm's picture
scatsm
Posts: 235
Joined: Apr 2013

In my opinion, it's up to you when and if you get another doctor's perspective. if you do, the downside is more options to choose from and no one can predict what will work with any certainty.  Ultimately we have to be in charge of our treatment. I wish I could lean on my gyn/onc like I did my kids' pediatrician, but the stakes are so high here and no one really knows what the outcome will be for any one individual. Sigh, I don't know whatI would in your situation except to say that taking Arimidex isn't doing nothing.it is a strong anti hormonal. I take it now for my second cancer, triple positive breast cancer.   Side effects are a second or in my case third menopause. Night sweats, thin fingernails...nothing terrible set all. From what I've read, waiting is a viable option. My onc said it's not clear that starting chemo sooner than later for a recurrence affects mortality. Such a crap shoot! Whatever you decide, we'll be here for you!

susan

mopar
Posts: 1948
Joined: May 2003

Whenever you have the need to get a second opinion is when you go for it.  Let us know what you decide and what you find out.  Till then, sending lots of hugs and prayers.  Remember, it may be nothing.

Monika

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

"Something on the spleen" is not specific. Grab a copy of your latest and previous CT scan on the CD and get another independent radiologist, ideally at another hospital to review both scans. If your latest CT was inconclusive - redo it.

Ask your ONC what the reasoning was behind prescribing Arimidex. Were you ever told that your cancer is estrogen-positive? If it's e-negative, taking Armidex is like popping tic-tacs, only with more hot flashes.

If you are in fact having an early recurrence, symptoms may not appear for several more months. Starting treatment too early will not affect the outcome, but will decrease your quality of life. 90 days "benign neglect" are 3 good months without chemo if you can temporarily put this out of your mind. The new hat will be there when you need it.

Thinking of you and wishing you all the best,

Alexandra

seatown's picture
seatown
Posts: 212
Joined: Sep 2012

Thanks, everyone, for your comments. You're great to take the time to reply. My surgeon did outline 4 different options & left the choice to me & my husband. That in itself was tough--how am I supposed to know which option would be best, while sitting there half-naked & expecting to hear something else? I thought he would put me on something like Doxil or Gemzar. The surgeon acknowledges many docs might choose that course. We chose the option he recommended when asked.

Alexandra, you raised a question I had but don't have the answer to. Never been told my cancer is estrogen positive, but I assumed they must have investigated that.

I see my oncologist in 10 days & will discuss further with him. In the meantime, I wrote in more detail about my present circumstances at www.CaringBridge.org/visit/CaroleSeaton

Thanks again! 

 

lovesanimals's picture
lovesanimals
Posts: 1227
Joined: Sep 2011

My two cents in response to your original question is to get that second opinion whenever you have any doubts or concerns about your doc's opinions or decisions related to your health care.  We are our own best advocate and we have a right to make sure that we are comfortable with the decisions and treatment options.  Good idea to discuss this further with your oncologist.  Whatever you decide, we are behind you 100%.

Hugs,

Kelly

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012
  • I think you answered your own question when you asked it.  When in doubt always seek another answer.  When I was first diagnosed and my once laid out my chemo plan I asked if I could get a second opinion on treatment.  She responded with " I would think you were crazy if you didn't.  I went to Roswell cancer center in buffalo NY.  Turns out the doc that was covering that day was the head of gyn onc ology at the hospital and he agreed with my treatment.  Maybe your 2nd opinion could help you decide what the best approach is out of the 4.  
JulieBelle's picture
JulieBelle
Posts: 61
Joined: Jul 2013

Hi Carole

It seems to me that you have questions and doubts and probably that is time for a second (or even third!) opinion.   I believe we can never have enough information.   Go with your gut feeling.   Hugs, Julie

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

When my Onc saw my CA-125 numbers starting to creep up after almost 3 years in the normal range, I had a CT scan which showed further advancement and he also suggested a watch and see approach. It was after 6-8 months that I restarted a chemo regiment. That was 4 years ago this month. Since you've been thinking about getting a second opinion, then why not do so, especially if it would set your mind at ease. My waiting and watching worked out well for me, but we're all different.

                                                        (((((HUGS)))))   Maria

seatown's picture
seatown
Posts: 212
Joined: Sep 2012

Thanks again for all your input. I've pretty much decided that I'm going after a 2nd opinion after I see my oncologist next week. The gynecologic cancer community here is a small one -- my gyn/onc surgeon has several times referred by name to the surgeon who did my hysterectomy 5 yrs ago, though they work for different entities. So for all I know, it's possible that my current docs have discussed my case with another doc who treated me 5 yrs ago. My oncologist has mentioned that a "tumor board" has considered my case, but I have no idea who comprises the tumor board. 

Also, what some of you have said about waiting to resume chemo is very useful to me. It made me recall that at some point in this journey, one of my docs described an option he called "watchful waiting." That's probably a much better term than benign neglect, which was my choice. I didn't mean to imply at all that I thought my docs might be neglecting me!

Best of health to us all in the New Year! Again, thank you.

Carole

 

Cafewoman53's picture
Cafewoman53
Posts: 734
Joined: Jul 2010

You need to get one to ease your mind. I have complete confidence in my doctor so it makes things easy for me, but a second opinion never hurts. Are you near a cancer center or a large teaching hospital? Even if you have to travel there is a group of retired pilots that will fly you to and from your appointment for free, the name escapes me but you can google it.

Good Luck

Colleen

Sister Mary
Posts: 5
Joined: Jan 2014

seatown - i think you answered your own question.  If there is doubt in your mind, get a second opinion.  What is the downside? best case, the second doc agrees with your current doc.  Worst case, you get another qualified opinion.  It's worth it.

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