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Sharing second opinion consult

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

I thought I would share the results of my consult with another gyn onc this week. This is probably mainly only relevant to those experiencing recurrences.

I wanted a fresh perspective on treatment options as well as seeking a more positive relationship that would provide a better sense of confidence in managing my cancer issues. I have been dealing with UPSC recurrence in lymph nodes for 2 years, treated with chemo throughout 2010 and this past summer with palliative radiation to supraclavicular nodes. My issues have been that my gyn onc seemed to believe I had outlived my statistical life expectancy so QOL should be my focus. When I commented that I felt since recurrences are all in lymph nodes with no other evidence on CT or PET of any other tumors or organ involvement that should be construed as a better case scenario, his response was that I had cancer everywhere in body and scans just don’t show everything – ‘if it is in your lymph nodes then it is everywhere.’ This just created an image in my mind of cancer running rampant throughout my body and was quite distressing. He was quite off hand about what chemo regimen he would recommend with the comment that they all only carry a minimal expectation of being effective.

This week’s consult was quite refreshing and although the dr never discredited anything the prior gyn onc had said – indicating it was probably just his manner of explanation/attitude that was the issue. And so it may be, but I’ll definitely go with someone who seems more engaged and believes in the possibility of there being more options available and with potential to be effective. Additionally, he said if he was in a situation of having recurrence only in lymph nodes vs. in lung, liver, tumors in abdomen, etc., he would so want it to be the lymph node scenario. It is when there is demonstrable organ involvement that things get serious. He believes each patient will follow there own path through this disease and how long that path may be, is completely individual and unknown.

We have agreed that unless anything changes (symptoms arise) that I will do a new PET/CT in January and we will decide on options at that time. Since I am essentially without symptoms there is no reason to start chemo asap especially as we head into the holiday season. He noted there are simply no definitive studies that overall survival time improves by starting chemo prior to being symptomatic. However, he also agreed that if I feel more comfortable getting chemo started we can go that route as well. I will probably be ready to do so as there is a stress element associated with being aware of the cancer progress and not treating it. That is what I did in Jan ’10, after having a positive lymph node biopsy in Oct ’09 – I was a lot more stressed back then and little could I have imagined that 2 years later, not only would I still be here, but would be pondering the very same issues!

On a different note, he kept describing my cancer as ‘ovarian’ which my original gyn onc also did, but my recent gyn onc insisted on calling it uterine. How it is coded can determine eligibility for clinical trials, approval of certain medications, etc. I asked him to clarify, and he had just gotten the papillary serous description mixed in his mind with ovarian. I noted that my differential diagnosis was endometrial vs. ovarian vs. primary peritoneal by the pathologist. I had my path report with me which noted that no cancer found in the uterus, neither then at debulking surgery nor with a D&C for uterine bleeding 2 years prior to that. He is not convinced I even have uterine cancer and it could be primary peritoneal. He may consider having slides sent out for review. Due to that common histology of all three types, treatments are essentially the same, so it really has not led to any erroneous treatments.

Sorry for such a lengthy post but thought the info could be helpful to others in a similar situation.

Annie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Well, I am encouraged that this doctor isn't calling in the funeral director like your other one. I am amazed at your patience with all this And encouraged that this doctor is really paying attention to you.

Question: you mentioned having chemo and then palliative radiation. When I had recurrence in supraclavicular nodes my doc consulted with the radiology onc. and they recommended doing both at the same time - calling this approach synergistic (combination would be better than each singly). Can you discuss this with your doctor? I had carboplatin weekly and low dose tomo daily for 7 weeks. So far things remain good.

I will also have a PET/CT in January. We can compare notes then!!

My best to you. Enjoy the holidays, Annie. Mary Ann

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Thank you Mary Ann. I am so glad you were able to receive your combo treatment and that a year out you are doing so well - that's awesome! I actually had a number of enlarged lymph nodes with supraclavicular nodes only ones causing discomfort. I think I must accept the cautionary approach of my not doing too much at once as i really have had quite a lot of chemo and the damage to bone marrow tends to be permanent. In addition to my 6 cycles of carbo/taxol in '08, I have since had 2 cycles of Doxil and 8 cycles of Gemzar during 2010. Previously I had 4 cycles of Adriamycin (non-liposomal Doxil of which one can have only a limited lifetime dose) and 4 cycles of CMF (cytoxin, methotrexate, 5-FU) back in '93. Then I have also had 6.5 yrs of Tamoxifen and 4 yrs of Femara. But, hey, I'm still here ;-) My new gyn onc agrees with initial thought of prev gyn onc that carboplatin should be my next chemo. Since my first recurrence was over a year post initial carbo/taxol, then my cancer was platinum sensitive, so is a good choice to go to again. He wants to save taxol in case I am able to get into a clinical trial as a next step after this, that taking taxol with the carbo would preclude me from. Keeping options open!

I recall that last year you were just recovering from your treatments as we went into the holidays, so I wish you much enjoyment of this upcoming season!
Annie

zarkapopovic
Posts: 30
Joined: Jan 2011

Dear Annie,

I had a more common cancer (endo adenocarcinoma stage IVB) and it is only in the lymphs, too. My current gyn onc said I was on the "good side of IVB because of the lack of organ involvement. However, I have had my slides reviewed twice since the original pathologist staged me (I went from IIIC to IVB). Whenever you are considering a new treatment it is always a good time to have everything looked at and rethink who you are getting care from. I fired my first gyn onc; he was a great surgeon but lousy at follow-up care. I am now in a clinical trial and getting great care.

Good-luck and keep us posted.

Zarka

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Thanks Zarka! Do you mind sharing what your clinical trial is?
Annie

Kaleena's picture
Kaleena
Posts: 1227
Joined: Nov 2009

Dear Annie:

I am sorry that you had a physician who did not have the time for any positive reinforcements. I am glad you got a second opinion.

My original diagnosis was endometrial adenocarcinoma, but because it was found in both the uterus and ovary, they weren't quite sure where it all began. However, my original gyn/onc (now retired)treated me as "ovarian". I see why now, because more tests are approved than with endo. After my initial gyn/onc retired, I found myself with a physician who because I was basically NED, couldn't give me the time of day. When it was found that I might have a recurrence, he didn't give me any options, said it was not operable, wanted me to do chemo, radiation, try surgery, and probably end up with a permanent colostomy.

Of course, I got a second opinion. The mass that was there from my original hysterectomy (on CT scans believed it was scar tissue, and on PET scans was below activity)(although I did have a positive biopsy), I got surgery with my second opinion doctor which all was found to be negative (except one removed lymph node which they found microscopic cells).

I feel so much better with my new doctor and how he relays information to me even if some of it was the same as my previous doctor. I didnt want to feel like a "bar code" where they just push patients through, etc. etc. My new doctor is caring and compassionate and respects me and isn't that a big part of our recovery and treatment?

It sounds like your new doctor is like mine. Reconfirming the biopsy, etc. I hope you get favorable results and are more comfortable with this doctor.

My best to you. Thanks for sharing.

Kathy

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Thanks Kathy! I am so glad you are continuing to do well. Your experience shows how much effort we must sometimes go through just to get the 'right' care. You had amazing perseverance and it so paid off!
Take care, Annie

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