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visit this morning with my gyn-onc: the good, the bad, and the ugly

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

sisters,

saw my surgeon this morning for my 3 month check in/up, and here's the news:

the good: my external and internal exams were "pristine", i reminded him that he usually says my vagina looks "fabulous," and he replied that he's expanding his vocabulary.... so, even though my acupuncturist and medical oncologist both thought my urinary symptoms (like having an uti) were hormonal, it still worried me some. so, quite relieved on that score.

the bad: he was NOT HAPPY that i did not have another ca 125 after 3 months, and was not planning to have one until november, and therefore no ct/pet scan. my partner and i actually thought he was going to insist that i have a ca 125 right now, but he stopped himself, though made it clear he did not agree with my medical oncologist that i could wait 6 months before having another ca 125 (november, at this point).

the ugly: started talking about my one slightly enlarged lymph node that he said last time could be a number of other things besides cancer, and how we needed to have the blood tests and scans to see what's going on there and elsewhere. then started talking about my options: radiation, which he prefers to wait until i really need , or the chemo i already had, or chemo by pill, which is easier to take, etc.....all this, with absolutely nothing having changed! i asked him why he was saying all this now, when he didn't say a word last visit, and he could only say well, it's 3 months later....hmm, that's not quite good enough, methinks.

he did say, if i wanted to not know, and just wait until there are symptoms to do anything, he could understand and support that. i should know, however, that that was not "standard." i said, yes, i knew that, and i'm not not standard. he was also not happy when my partner quoted my medical oncolgist re: there was no evidence that starting chemo right away when anything showed up improved life expectancy, and in fact, it was shown that too much chemo was being given too soon. he disagreed with that, of course.

so, i'll see him in 3 months, will probably decide to have another ca 125, by then, and ct/pet if warranted. the gyn-onc did say that if my ca 125 even went up as high as 35 (it was about 20 last time), he wouldn't worry about it. only if it spiked to, say, 500, or like that. i agreed with this, and was glad to know my ca 125 could go as high as 35, and hopefully not have it be a problem.

so, mostly i feel good re: results, but my partner and i were both very sobered by the dire picture he painted. he does have his agenda, and he wants to know everything now, control the works and treat, treat, treat. and blast us, based on absoultely no new information, with all possible treatment options. i believe he's sincere in his way, but not above using scare tactics to have things done the way he wants them done.

just thought i'd let you all know the latest on this front. now off to work, then tomorrow lgbt family camp for the weekend with partner, daughter and 2 1/2 year old granddaughter--hardly rough camping what with cabin, electricity and bathroom, plus 3+ catered meals a day. my kind of camping, however.......

thanx for being there,
sisterhood,
maggie

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lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Have fun at 'camp', and try and put this out of your mind. You've decided how often you want the stress of testing, and they'll just have to play it by your time schedule. I want you to be at peace with the decison you've made, but I like you too much not to make 1 comment.

I will tell you that I have NEVER had any physical symptoms, not before my initial cancer diagnosis and not before my recurrence. And if I hadn't seen it lit up on my PET scan, and seen the path report from the needle biopsy, I'd still never know I had cancer as I STILL have no physical symptoms at all. Even with that lymph node growing under my arm, no one can feel it or see it yet, and 3 oncologists have tried to. I'm not saying this to shake your confidence in your decision, but you may want to factor that in to your thinking. My 1st hint of a problem was when my 3-month routine CA125 spiked to 155, triggering the scans that triggered the biopsy and confirmation of the recurrence.

That cautionary tale aside, I wonder if I'd have been better off to take an extra 3 months before having that CA125 taken. That would have given me 3 more months of no chemo, and 3 more months of being my old self. That's a pretty big loss. & I'm not sure I got much in return for losing those 3 extra months of non-treatment, prognosis wise.

So, ENJOY these 3 months! I believe you'll come back to this oncologist in 3 months to a low CA125 and confirmation that you are still in blissful remission!

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

thank you girlfriends for your comments; i can't tell you how much i appreciate them and you.

linda, i recall that you never had any symptoms--ever. i, on the other hand, have felt every damn little thing. i had to insist on a ca 125 with my primary doctor because i felt bloated and had gas, and just felt punk. also had to fight for ct scans, since she felt foolish ordering them for "gas." can you imagine?? in any case, obviously, the cancer had been going on for a long time before i had symptoms, since it was advanced by the time it was diagnosed. so, i'm of two minds: i do hear what you say about maybe getting tested before i have symptoms, if that should happen, and at the same time, i want those few extra months of "bliss", and i think that's the side i still land on. i do plan on having a ca 125 towards the end of november, and then, depending on the numbers, a ct/pet scan if needed. i honestly don't think a few more months are going to make the difference between life and death. by the way, my gyn-onc is a brilliant, middle- aged patriarchal male, my medical onc is also brilliant, but a young woman, much more in tune with where i am. you know i am a big fan of yours, linda, think alot about you, and am always hoping for the very best for you.

connie, i'm so glad we're pals, and i love that you too are a fan of muriel rukeyser. what she said re: women telling the truths of our lives would split open the world is so true, as probably you and i (since there are only a few years difference in our ages) both learned in those heady consciousness -raising days. thinking of you alot these days, and hoping your treatment is continuing to go well.

nempak, i always appreciate reading what you have to say, and thank you for your responses and posts.

hugs and sisterhood,
maggie

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nempark
Posts: 683
Joined: Apr 2010

Maggie I was thinking about you. Have fun and be well. June

susafina
Posts: 134
Joined: May 2010

Although I am new to this site and this madness that we all are facing, sometimes you have to stand up and decide who is in charge. This month I will be facing my 3 month post treatment checkup by my surgeon and sometimes is is frustraring when the surgeon and medical oncologist suggest different things. Both my docs are great and I trust them, I feel sometimes we have to take the bull by the horns and be our own advocates. Gone are the days where as patients we just do whatever the doctors say. We are strong people who have a say in how we are treated. I have learned so much from all of you here that I feel stronger in saying that I am in charge of me.
I am in awe of all of you and hope that I can contribute one day and help all of you. I say go camping and have a ball with your family. Seize the day and enjoy life. we have to! Tests and scans can wait a little! We all know how important they are, but sometimes we need a break to feel "normal" again!
SUE

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

thanx for your comments. carpe diem to you as well when you go for your 3 month checkup!

june, i meant to address you by your name, not your csn moniker. sorry.

sisterhood,
maggie

nempark
Posts: 683
Joined: Apr 2010

Just be well and call me anything!!! June

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Maggie...have been anxious to hear what your onc appointment would reveal. Sounds very interesting and I agree on one thing the Onc said... This is not "standard". You are far from "standard" because you have done your research, know your heart, mind and body, and you KNOW what you want! So many patients would never question their dr. or have strong opinions about what the Dr. says.

I agree that 3 months isn't going to make a big difference in the grand scheme of things and there is nothing wrong with 3 more months of "blissfulness". Go for it! Am so glad you have such a wonderful, supportive partner and good advocate for you!

Have a wonderful time on your camping trip.....that does sound like a MUCH better way of camping that I have done!

Enjoy life!!

Karen

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

thanx, as always, for your comments, but you give me too much credit. i have to say i have NOT done a lot of independent research since my diagnosis ( i did alot before, trying to figure out what the...was going on with me) , but my friends have (and know what to tell me and what not ), as have our sisters here on line: these are the folks i listen to. frankly, it's scary for me to do a lot of research on my own, since i tend to see and remember all the dire stuff. i do question doctors, however, since i've known many in my life in general, and know how fallible they are. they have as many of their own judgements, biases, short sightedness, ignorance, flaws, agendas, issues of power and control as anyone else, probably more. i do, however, have a wonderful partner who's with me all the way; i honestly could not have made it this far without her, and i do pretty much know my heart and mind.

thank you for your support, karen, it does mean a lot to me. now, off to camp.......(my son was a counselor at this camp for many years, and i'd visit with him there, so it carries warm memories) just hope it's not too hot, which it promises to be. my only regret is that i'll be missing some of the us tennis open this weekend. usually i'm glued to the tv for the full two weeks....any other tennis fanatics here??

hugs and sisterhood,
maggie

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Hope you make some more "warm memories" on your camping trip this weekend. I too am a big tennis fan, so I'll watch the matches for you. My husband and I watch all the tennis we can. We used to play, but knees don't allow us to play anymore.

I admire your treatment decisions, too. Like Linda said, I also had no symptoms before aI was diagnosed with Stage III-C UPSC. So when the doctors say " You have no symptoms". That is not a comfort to me. Because my CA 125 has continued to rise since I had my last chemo, I have had repeated CAT scans. Luckily they have been negative. So who knows what the right answer is????? I sure don't.

Have a wonderful weekend. In peace and caring.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Good for you to have a say in your treatment planning. I do think there is a disconnect between the medical profession and treatments and the actual needs of the patients they are treating. They get so wrapped up in what they do, they don't think outside that box. They really don't have all the answers, just what i call the 'mass market' approach to treatment. Only treatments that are found to work over a broad spectrum of patients with just one issue in common become the standards for care. Likewise those outcomes become the 'norms' by which they dish out advice. We really do have to stay on our toes to monitor all the options.
Have a wonderful, relaxing weekend with family. --Annie

Kaleena's picture
Kaleena
Posts: 1781
Joined: Nov 2009

Maggie,

Always go with your own instincts. The doctors may suggest and give us their opinions but we should not be made to feel that we NEED to do what they say. They are just going with their stats and not really looking at you as an individual. Having said that, it is not easy, though, either to take a stand. I support your decision.

Before my initial diagnosis I had asked whether or not there was some type of scan I should have before my surgery and was advised that ednometriosis (just the disease, not cancer) wouldn't really show up. I ended up have two surgeries within a month of each other!

Also, if I left it to my other doctors, in July of 2009 I would have been on chemo (the one I was allergic to) and radiation,plus multiple surgeries. That was over a year ago. Today, I had a recent surgery in February and all findings were negative except for one small lymph they took out which came back with a microscopic cell in the middle! In June, my PET scan was clear.

Well I guess what I am trying to say is that it should be our choice whether to take a drug or not and we shouldn't be made to feel that our choice is wrong. Yes, waiting may cause other problems, but then again it may not. It is our decision and we have to deal with our decisions and the outcomes they may bring.

What a roller coaster!

Anyway, enjoy your weekend.

Kathy

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

Kudos to you for blazing your own path and having a voice in this process. You are teaching the docs something, I'm sure. My doc told me about a research study that involved doing regular testing and needed treatment along the way. One group was given test results routinely and the other wasn't - they did get treatment if needed. The conclusion was that both groups had same results healthwise but the one that did not get test results had improved quality of life. I know this is not exactly what you decided but quality of life if very important and you are calling the shots. You are a role model to me.

Mary Ann

Double Whammy's picture
Double Whammy
Posts: 2803
Joined: Jun 2010

to the days when too many unnecessary tests were ordered that helped drive the cost of health care up to today when too often not enough are being done and jeopardizing patients' lives? (and yet the cost continues to rise) Ok, off my soapbox.

Good for you Maggie in taking charge of your decisions. Being in charge also means you can change your mind at any time and have that test sooner if you want. You are not making uninformed decisions, you listen, think about it, discuss it with our partner, and decide. We don't get to decide whether the cancer comes back or not in spite of throwing everything we've got at it, but we can decide what to do about it if it does - and when.

Have fun on your camping trip,

Suzanne

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

I too agree, we must march to our own uniques inner drummer, picking up information along the way, studying it and marching on the path of our choosing.

The road less traveled is not necessarily the wrong road, and as Frost says, it can make all the difference.

These choices are the essence of life or death and must be made with all possible conscious, concise, deliberation and not as a result of the doctor's insisting.

Take heart, we love you and support your choice to make your own decisions.

Or something like that.

love,

claudia

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

dear sisters,

thank you all for your responses; it's always such a pleasure to hear your unique voices, and to have your support, whether you agree with all my decisions or not, i feel supported by you all. i did have the most wonderful time "camping" at gorgeous camp tawanga in the stanislaw national forest right near yosemite. it was hot and dusty, but who cares? there was a huge pool, and the river to cool off by. the most fun was watching how my 2 1/2 year old granddaughter interacted with the other kids. she latched on to her 3 1/2 year old cabin mate, evan, and they were inseparable. forget mom, and the grandmas--it was all about evan, and dancing in front of the fire and playing congo drums when we were all dancing. hard to believe she's so young....and, as i've posted elsewhere, i had the best massage of my life. if anyone in your area does" thai massage," check her/him out to make sure s/he's reputable, then go have one. i've never had such a feeling of well- being during and after a massage as i did with this one. it's done with loose clothes on, so not about the skin, but the massage therapist moves all different parts of your body, uses pressure and energy (no pain), and you feel like you've had a workout, but without doing the work yourself. i can't tell you how good it felt, and i so highly recommend it. i'm going to include it in my massage regimen as soon as i can. hope you can treat yourself to this.

sisterhood,
maggie

CaCowgirl
Posts: 27
Joined: May 2010

All of us have been through so much-& it's such a scary journey. I could not face the prospect of "aggressive" treatment that my oncologist wanted to do, since there wasn't any evidence or "place" to target. She said I was making a big mistake in not hurrying into chemo, but my gyn said that ultimately it was my decision & they could not force me to take the treatments, & let me tell you, the last couple of months have been very nice. Today I was so relaxed & happy-had a great ride down on the river bed, made a tasty dinner & enjoyed friends & family. Barely feel anything from the surgery site, & I'm getting my strength & stamina back. The last heat wave tired me out, but now that it's cooler, I'm doing good. I'm happy to be back at work & they are glad I'm doing well. Praying it will continue, but I'm doing all I can to keep myself healthy,too.

Still reading, improving my diet & checking in here,too to hear the latest. I've learned so much from all of you & appreciate your sharing your problems & triumphs. In sisterhood-Kathy

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

good for you! it is scary, but i know just how lovely it is to be free of treatment, and just living your life. may i ask what kind of cancer you had, and why your onc. was recommending chemo if there were no target areas? i'm assuming they feel they got all the visible cancer. i did end up doing chemo though i was tempted not to, but ultimately believed it was in my best interests. but, i didn't hurry into it and took an additional two plus weeks more than was recommended to get started. i declined radiation since 5 different docgtors had 5 different opinions.... it's really the luck of the draw, ultimately, so i think we all need to do what we feel is best for ourselves, no matter what the doctors say.

best to you; stay healthy.

sisterhood,
maggie

Kaleena's picture
Kaleena
Posts: 1781
Joined: Nov 2009

Maggie:

Sorry I left out some stuff in the post. Initially I had a total hysterectomy for severe endometriosis in Sept of 2005. After the hysterectomy, they path came back indicating they found cancer. So in October of 2005 they had to go back in to do a staging. All testings and nodes were clear. However, since cancer was found in the uterus and part of my ovary, I was diagnosed with Endometrial Adencarcinoma Grade 2 Stage ii/iiia. As a prevention, I had chemo. I had an allergic reaction to Taxol so I was given carboplatin and gemzar. In August of 2006 I had three brachytherapies.

My original doctor retired. I went to a new doctor who did not want to deal with me I believe because I was NED. It wasn't until July 2009 that he decided to do something with a small mass I had since 2005 which was causing me pain. So he decided that it couldn't be operated on, I needed to start chemo right away, if it shrank they would do surgery, and then probably more chemo. I changed doctors to another hospital who did a biopsy on it who said it was positive for endo cancer. He told me he would suggest 7 weeks of daily radiation, but that he couldn't do surgery, so he sent me back to the other doctor!

Thats when I went out of state and found another doctor. He told me he could operate. I had clear margins, etc. I had operation in February of 2010. Everything was clear and the mass was negative! They did, though, on a lymph that was sent away, find microscopic cells, but the treatment for that would have been removal and it was already removed.

Well enough about me, I am glad you had a great time; We all need that! I have three sons, 16, 17 and 19. They have been keeping me busy. We took them on a cruise at the end of July. We had a wonderful time.

Best to you and healthy thoughts!

Kathy

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

geeze, you've really been through it. it's so luck of the draw whether we have cancer or not, where it is and where it isn't, what doctor we get, and what options each doctor is willing to pursue. it's so hard to keep track of. wow, three teenaged boys, they must eat you out of house and home. hope you have help with them. is the photo one of your partner?

again, thanks for all the details. for me, no detail too small. a friend once had a tee shirt made of for me of that saying.

sisterhood,
maggie

Kaleena's picture
Kaleena
Posts: 1781
Joined: Nov 2009

Yes, that is my husband, Chuck. He takes very good care of me and has been by my side through everything.

We have always taken the approach of not "why me", but "it is what it is" and so how are we going to handle it? Throughout my chemo we would make jokes, laugh, sometimes cry. When I would get a face that looked like I would cry, he would make the same face and then we would laugh together. Deep down I knew how worried he was but he never let me know and I did the same with him. We always try to stay on the positive side and try to keep all negatives out.

My boys are really active. My oldest is now doing his college semester in Italy. I miss him but I am glad that he is getting the chance to experience so many wonderful things. My other two are in high school, they are in the marching band and jazz bands at school. So I will be going to a football game tonight! One thing about my boys is that they try to eat healthy and try to stay fit. (something our parents didnt have the knowledge at that time).

((Hugs)) Health and Happiness to you!

Kathy

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

it was really great reading your post; i know what it's like to have a partner with you through everything; it's hard to think we could have done it without them. chuck sounds like a dear; sounds like you're both lucky to have each other. that's great about your boys, lucky kid to be able to be in italy for a semester, and your other two sound like they have very interesting, healthy lives. if your teenaged boys try to eat healthy, that has to be because of you two, and what you've instilled in them.

we, too, have never taken the "why me" either, more like why not me? we're no different than anyone, and certainly not immune to bad things happening. it is strange to me, though, how extraordinarily healthy i was before diagnosis, so it was a huge shock, as i think it is to everyone. how could it not be? in any case, we're muddling along; it's been nearly a year since i've finished treatment, and i'm feeling almost normal again, though after cancer, nothing is really quite normal again. still, it's so nice not to be in treatment, hopefully this will last for awhile.

thanx again for your post, kathy, and your good wishes, health and happiness to you as well.

sisterhood,
maggie

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