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Now I'm Freaked! Not Sure How to Interpret Dr. Appointment This AM.

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

I had a consultation with my GYN/ONC this morning to go over the T8/Bone biopsy results. He was on his annual volunteer doctor trip to Guatemala last week, so his associate called me to let me know the USPC has spread to the new location. She scheduled me for the 1st appointment this morning. I could sense a totally different demeanor in my doctor as he talked to me about the new results and treatments. He could have been stressed at being a week behind with his patient load (I know they squeezed me in this morning, plus I was aware of another woman being squeezed in). Or was he less optimistic or genuinely concerned about options. First he reminded me this cancer is not curable – it’s only treatable. He wants me to receive radiation for the spot on the vertebrae and for the small spot still remaining in the Supraclavicular Lymph node in my neck. He said radiation would be about 5 – 6 weeks, but didn’t go over how many radiation treatments there will be. He’ll request another Scan and follow up with more chemo. Hopefully the radiation will get both spots, but I still have the two small spots in my lungs that have responded well to chemo so far.
Then the meeting started getting weird. He seemed irritated as he mentioned there are different chemo combinations to use, but getting them approved through insurance may be difficult. He told me he contacted MD Anderson this morning about any clinical trials for USPC or Uterine Cancer. I couldn’t tell if he was irritated because the chemo he may want to do, cannot be administered by his office (Memorial Hermann Memorial City Hospital) or if insurance just won’t approve it, period. ALSO NOTE: I was originally told all the various cancer centers throughout the city of Houston are licensed to do the exact same basic chemo protocol as MD Anderson. Only, if one doesn’t respond to the basic chemo treatment protocols (which I have so far) do they get referred to MD Anderson who IS licensed to do lots of experimental drugs, clinical trials, etc. I don’t relish the thought of going downtown to the Medical Center, the parking, the gas, etc. but I do want to live, so that’s not a big deal to me.
This was the kicker – my doctor has ALWAYS been like a cheerleader, never allowing ‘US’ to think things aren’t going to work out. But, in the course of the conversation, and in my confusion of his less than optimistic attitude, I asked him “What exactly is my prognosis?” He leaned back against the wall, with his arms crossed, and after considerable thought, said “Without any further treatment, you have about 6 months to a year.” I asked how can someone like me, who looks healthy, feels healthy (when not on chemo), and has no pain, etc. die in such a short amount of time. He said that’s how this disease works. That sweet, positive doctor bluntly answered my question this time. I’ve asked it before and he wouldn’t even go there. So Now I’m Freaked. Where did my optimistic doctor go? I am going to proceed with whatever treatment plan he has for me, but was this his way of telling me things aren't going as well since cancer seems to be popping up in several places? Is this his way of preparing me for the worst? I've cried all afternoon!

Ro10's picture
Ro10
Posts: 1474
Joined: Jan 2009

I can understand why you feel "freaked". Especially when you doctor has always been so positive. I do hope the radiation works for you, and does not cause any discomfort for you. Especially since you have no pain now. I hope you get a treatment plan in place and you can get some peace of mind. You remain in my prayers. In peace and caring.

pakb56
Posts: 141
Joined: Jan 2012

Bonnie, wishing you all the best and praying evertything goes well.

sunflash's picture
sunflash
Posts: 158
Joined: Aug 2011

Bonnie,
I live in Houston, too. Even though I'm not going to MD Anderson, I went there for a 2nd opinion before I started treatment. My doctor (who works out of Texas Women's Hosp) used to work there but left to start a private practice.
What I'm wondering is.....can you go to MD Anderson for a 2nd opinion, or is that not possible since you're being treated by another doctor? I don't see why you couldn't do that. Then, you could find out first hand about any trials and find out what your options are, and what chemo they would try with you. The doctor I saw was Diane Bodurka, but there are several gynecological oncologists you could choose from.
My doctor, who I've seen for 5 years now, had no problem at all about me going for a 2nd opinion. I bet yours would be fine with it too.

I'm sure pulling for you here.....sending caring hugs and prayers your way.

Double Whammy's picture
Double Whammy
Posts: 2334
Joined: Jun 2010

but try not to read too much in to your physician's demeanor. His words about progression were "with no treatment". You are responding to treatment and will begin radiation soon.

About a second opinion, it sounds like he just checked about clinical trials that might be available at MD Anderson. They may have a whole different take on the best next step in your continued management. I think it would be a good idea to see what they have to say. Your cancer is rare and even tho you are under the care of a gyn oncologist, they may have more data, even anectodal, in dealing with your specific situation.

In the meantime, I'll send some cyberhugs and lots of prayers to you.

Suzanne

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

I haven’t posted much lately but your story compelled me to. That indeed is a lot to take in - of course you are freaked out. Actually, your story freaked me out too. I am in a similar but much more advanced place to you. As well, I have been on this journey a few more years than you - and my doctor is mystified I’m still here. In Dec 2005 I was at the place you were in Dec ’08. In Jan ’06 I had a D&C for sudden major uterine bleeding. The old biding-his-time-‘til-retirement gyn introduced a large volume of fluid into the uterus and when only about 2/3’s returned he went at the polyps with forceps. I’m quite sure that fluid took all my UPSC cells out into the peritoneal cavity to grow and spread until I was Stage IVB by Fall ’07. In subsequent 1/08 debulking surgery, no UPSC cells were found within the uterus despite all indications that indeed that was the diagnosis. I started dealing with recurrence in Oct -09, opted to do chemo throughout 2010 achieving apparent NED status by Jan ’11.

In April ’11, I developed that same supraclavicular lymph node mass for which I had radiation last summer. The PET/CT following the discovery of the mass also showed multiple new lymph nodes enlarged, but no organ involvement. Same story on Oct ’11 PET/CT with improvement in supraclavicular area. At the time, ‘watchful waiting’ was recommendation that was also agreed to by a second opinion I sought. By Feb ’12, I had both lung involvement (innumerable nodules) and a lesion in my liver. Major freakout time for me. Again my gyn-onc recommended conservative treatment and I gave tamoxifen a 3-month try. Second opinion at the time, recommended aggressive carbo/taxol course of therapy. My regular gyn-onc citing serious concerns about the effect on my QOL refused to do this treatment but he would be understand if I opted to change Dr and go that route. I was never able to tolerate full dosage of the Gemzar treatment in 2010. A PET /CT last week shows significant advancement of lung and liver involvement as well as a spot on T2 vertebra. Oddly, most of my lymph nodes have noticeably reduced in size. I will see radiation oncologist tomorrow for the bone met. But again, my gyn-onc wants me to consider not jumping into chemo yet. I have realized his thought is that as long as I am feeling better than I would be on chemo, I should avoid starting and get as much enjoyment out of life as possible. So obviously, the time frame question is one I have refused to pose, although I had decided it would be part of my next consult following this short radiation treatment I’m to get. I am always telling him that everyone is unique so how can he predict exactly what path and in what time my disease will take me. He always quotes the stats, but then again, he notes I haven’t exactly conformed to them.

Developing a spot on your bone while undergoing chemo is probably very concerning to him as that can indicate cells becoming chemo-resistant and more aggressive. The speed at which I developed recurrence post-chemo a year ago only reinforces my concern with undertaking excessive chemo treatments. This is an orphan disease with few dedicated UPSC treatments. We just use ovarian ca therapies. UPSC is more aggressive and less predictable. I am so sorry you had to deal with all this and I can so relate to where you are at.

Take every day as a gift – anything can happen to anyone, any day that snatches the future away. And smile – I always believe cancer does not like us smiling ;-)

Sending big cyber hugs and positive thoughts your way. (sorry for long post if you made it thru!)
Annie

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Bonnie I'm so sorry about this latest turn of events. I bet your doctor is frustrated with insurance companies and with medical and human limitations in general. No one wants to hear such news and it sounds like your doc's the type that hasn't come to grips with delivering such news.

Crummy crum crums! But you've not yet exhausted all treatments, and the grim prognosis was with doing no further treatment. You're feeling good so RELISH it! The lungs have been responding to chemo so that's good. Radiation in the back and neck may also be very effective.

Don't lose hope. You've earned a good cry, but tomorrow is another day.

Hugs from Dallas,
Liz

light42day
Posts: 61
Joined: Mar 2012

You've been responding to treatment so there's no reason to think that you won't continue to. Only God knows what your prognosis really is and it's all in His hands. We will all keep praying for you for the cancer to be kept in remission. I know you haven't given up

but this latest news is just hard to deal with. Will keep you in my prayers!

Peg

debrajo's picture
debrajo
Posts: 792
Joined: Sep 2011

I always thought dr.s got snippy and scared when they get in over their head. They don't want cancer to be smarter then them and they just HATE having their track record messed up! By all means, get a second opinion!or a third. They have waaaay more tricks in their bags. They always give you the worst case scenario, too, so they don't get sued. Don't just take their word for anything. Go to M.D, Anderson(I do). Traffic, parking, gas are all still cheaper than a funeral. Repeat after me: I WILL NOT DIE, I WILL WIN THIS! You have a LOT of living to do! Best, debrajo

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Hope you get some treatment options that will slow this thing down. Many posts here are from people who have lived a long time getting treatment. Thinking of you and praying you get some help.

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

My heart goes out to you, Bonnie. I remember when a doctor told me the same thing 3.5 years ago (and I'm still here and happy too) and how devastating this was. I nearly panicked and wanted to start chemo immediately!!!

I agree that another opinion would help you and even your doctor who may welcome another set of eyes to help with decisions about your treatment. And I agree that God does call the shots for us.

Please don't give up hope. Here's a big cyber((((hug)))) for you. Prayers continue for you.

Keep us posted. Mary Ann

paris11
Posts: 132
Joined: Oct 2010

"Without any further treatment, you have about 6 months to a year.”

That was my prognosis in Jan. 2008.

Don't panic. Cancer is complicated. More and more persons are "living with cancer." Join us.

Connie

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Bonnie,

What gets into some of these docs heads...what was this guy thinking...hum????? We simply cannot control others emotions, but we truly can control ourselves and direction we choose to take. At this juncture as per others here, get a second opinion. You're feeling good, that's fab!!!!!!

I've had a good friend diagnosed with stage 4 liver cancer, given 1 year to live, per her doc telling her directly. She started gathering up her things, ready for the end. But...she had a wonderful turn around and today after a grave diagnosis in '07, she's cancer free...enjoying a wonderful life! Now how's that for a complete turn around from what her prognosis was?.

Keep your wits about you and figure the doc had a rather bad day, that forced you to feel bad. Pick yourself up and as Connie mentioned DON'T PANIC and join others LIVING WITH CANCER!!!

Hugs,
Jan

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