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do have recurrence, but not as bad as i feared

maggie_wilson's picture
Posts: 616
Joined: Nov 2009


got the results of my ct/pet scan yesterday and thought it would light up like a xmas tree. it didn't, but i do have 4 small, new cancer sites, none on any vital organs, fortunately. one is pressing up against my urethra, however, so that if it gets bigger, it could impede my peeing, and cause damage to my kidney, so my doctor is watching that closely. she's treating me with hormone therapy, one month tamoxifen, and one month megace. i see her again in two weeks for more blood tests, etc. overall, i'm relieved, but far from happy. my doctor said most women with upsc are er/pr negative. i had the test done, and should get the results any time now. oh, i also have a slightly enlarged para aortic node which increased by one mm in 10 months, so relatively slow growing. if the hormones don't help, then chemo next, and no way to have functional assays done on fresh tissue to see what chemo might work best. i think every doctor should do this after surgery as a matter of course.

i emailed my doctor with a lot of new questions once i got home, like if i am er/pr negative, how likely is the hormone therapy to be successful. i have read that some women with negative er/pr do benefit from this combination, but not so many. i've also heard that this hormone therapy can age you, not just cosmetically, but your joints, lungs, etc., so it's not harmless. if it doesn't work, i'll only be on it for 2 months, and if it does, then i'll be glad to be aging.

not a lot more to say at this point. will be interested to hear what my doctor has to say re: my questions. anyone here have experience having hormone therapy for upsc recurrence. i'm still interested in immunotherapy, but not interferon. not sure my doctor will go for it, however. probably will get a second opinion if it's determined that chemo is my only next option.

hope everyone is doing as well as possible.


Ro10's picture
Posts: 1579
Joined: Jan 2009

Wish you would have gotten better results from your PET/CT. But it does sound like the growth is very slow. If you remember I started hormone therapy last week. The doctor told me it only has a 10 - 20 percent chance of working. But my thoughts are that I will have 2 more months where I am not on chemo.

So far I have not noticed any side effects from the hormone. I have taken only 7 pills so far, but with all my allergies to medicines, I am happy to not experience any side effects.

I hope the growth near your uretha is also slow growing. A 1 mm growth of the para aortic node in 10 months is very slow growth. Lets hope it remains very slow growing.

I'll be interested in hearing the answers the doctor gives you. Don't you have a consultation set up with another doctor after your stay at Commonweal. Someone told me that people on hormone therapy look wonderful. We will see won't we. Take care of yourself. In peace and caring.

lindaprocopio's picture
Posts: 2022
Joined: Oct 2008

All in all, it's not that bad a CT/PET result, but ARGH!! I wanted you to be spared from any more of this treatment nonsense; I wanted you to be one of the lucky ones that never recurs and one day you wake up and realize you haven't thought about cancer for months!

I laughed at myself when I went out on the 26th to stock up on half-price Christmas cards, wraps, tags, & boxes,...laughed in the face of my prognosis and my own confidence that I will be here a year from now. "Mets to the liver" and I still hit the after-Christmas sales for cheap Christmas 2011 stuff; what does that say about the determination we all have to LIVE and THRIVE and PREVAIL??

You're right, sweet dear Maggie, that it's all a crap shoot. But that means the dice can roll either way, and Lady Luck may still smile upon you, kiddo. The tamoxifen/megace may be magic for you. & if it's not, the chemo may shoot you back into a multi-year remission. Where ever this journey takes you, I know you'll do it with style and grace. But DAMN IT, I didn't want this for you.

maggie_wilson's picture
Posts: 616
Joined: Nov 2009

i'm so with you re: hating, hating cancer, and having it take up so much of our lives. it's always something, just no rest for the weary. i think it's great that you went out on the 26th and got all that xmas stuff 1/2 price--i think it says that your unconscious knows more than your conscious does about what's going to happen for you. i always believed you are going to prevail, stupid mets though there may be, and i still believe it. this comes also as much from my unconscious as my conscious hopes for you. wish i'd thought to stock up on chanukkah and xmas stuff, or i'd been doing the same thing.

i so want us all to be spared from all these ridiculous treatments, and treatment decisions. i do know that you're in chemo now, and i'm so hoping it's doing it's job. it's amazing how well you tolerate it overall, though i know you had some funky days. i feel everything, and don't tolerate chemo well. i developed a blockage after my very first chemo and was stuck in the hospital for a week. they put an ng in my nose and i was fine within minutes it seemed, but they kept me because my counts were low. i believe they only let me out because my mother was dying, unexpectedly, of double pneumonia, and i was determined to see her before she died. i got two hours with her, in my mask, shot up with red and white blood cell boosters, and feel i missed my own mother's death because i was so preoccupied with my own health status and treatment. i don't think i've yet grieved her loss sufficiently, but my stay at commonweal did help me grieve more.

so, dearest linda, i'll take heart if you do, and we'll both expect to outlive all the bloody statistics. thank you for reminding me the dice rolls both ways........

one last comment, i'm with dylan thomas about raging raging at the dying of the light, and it won't be pretty!!!! i think you're the one with the style and grace, to tell the truth.

i can really feel your words, linda, and how much you mean them. they touch me to the core.

love and sisterhood, as always,

maggie_wilson's picture
Posts: 616
Joined: Nov 2009

i do now remember you just started hormone therapy, but don't recall which. are you taking tamoxifen and megace, or some other combination? were you tested to see if you were er/pr negative or positive? sorry, if you've already gone through all this, my brain is not what it used to be. maybe it will return.......yes, i do have a second opinion doctor at stanford, but now that i'm doing the hormone therapy, i thought i'd postpone it until near the end of two months. i don't think i can stand one more cook in the kitchen--two doctors, an acupuncturist, and now a shaman!!!! very nice, genuine, healing man who i actually like quite a lot and who seems very medically knowledgeable, and not at all woo woo. he has his own opinions about hormone therapy, especially since i don't have the results yet re: my own er/pr status. that's very interesting what you say about how people look on hormone therapy--makes me think you're being treated with different hormones than i am.

thanks, ro, for responding and for the info.


hopeful girl 1
Posts: 454
Joined: May 2010


I am so sorry to hear there were some findings on your ct/pen scan, however on the upside, at least they were small growing as Linda noted as well.

It sure is a worrisome disease that we all live with.

I will send positive vibes your way that you body will respond to the new treatment.

Peace and healing.


upsofloating's picture
Posts: 473
Joined: Dec 2009

Maggie, I'm so sorry to hear of your 'new' news :-( But only mms of change in prior, considering no aggressive treatments is soo optimistic. I can only say how brave you are to handle this with such equanimity. I feel like a bit of a wuss in comparison, jumping into chemo back in January even with 3-month no-change in enlarged lymph nodes, although I did have a positive biopsy and knew the cause. I couldn't just go on with my life not 'doing' something. Every little ache or pain would have sent me into a panic. So, not only are our treatments different it's also the choices we make. The slow growth and the minimal changes may well be due to all the good things you have been doing holistically since we are told how normally aggressive this cancer is. So, kudos to you Maggie. Stay strong.

I'll be eagerly following your progress with the hormone therapy as I know my gyn-onc has mentioned that as a down-the-road option.
{{{HUGs}}} Annie

maggie_wilson's picture
Posts: 616
Joined: Nov 2009

i don't think you are a "wuss" at all; we all make decisions that we can best live with, and give us as much peace of mind as we can muster.i also don't consider myself brave at all, or at least, no braver than any one else on this site. of course you would have chemo if you thought you "couldn't go on with your life not doing something." the difference is, even without treatment for 13 months, i did believe i was doing something--the holistic things you mentioned: radically changing my diet, walking every day, listening to tapes, going to an alternative cancer healing center, getting second and possibly third opinions, doing research (not my strong suit, others are doing it more for me), now seeing a shaman (though i don't know for how long), taking as many vitamins and herbs my acupuncturist recommends that i can swallow without finally gagging, massage, etc. i think all of these things have helped, not enough to prevent a recurrence, but keeping it small. truly, i, as well as my doctor expected a lot worse. and now i'm trying hormone therapy, and am still very, very interested in immunotherapy and will explore that more before chemo. so, it's just a matter of perspective; i don't think one is better than the other; just different. i'm hoping, hoping that both of our choices work for us.

i will post re: the hormone therapy in a couple of months, or sooner if i have some more information.

take care, annie, thank you for your response.



upsofloating's picture
Posts: 473
Joined: Dec 2009


Thanks for positive comments ;-) You are right, we have both been treating our cancer all year, each in their own way. I actually began chemo prior to discovering Anti-cancer A New Way of Life book, even though years before I had read Comprehensive Cancer Care while being treated for breast cancer. Then, it seemed somewhat problematic to fully embrace the dietary changes which are not necessarily encouraged while killing off cells with chemo. And I consider the traditional western treatments rather barbaric: hack it out (surgery), burn it out (radiation), or poison it (chemo). So far so good with the poisons as ca125 is now 14 (from a high of 658 in April) and last scans were clean.

I am concerned with efficacy of hormone therapy for me as I was on Femara when diagnosed with UPSC and still believe my nearly 7 yrs on Tamoxifen prior to it may well be part of cause - I did nearly 11 yrs. of hormone therapy altogether before opting to quit back in April of this year. My breast ca was er+/pr+. Still my gyn-onc mentioned it in options list.

Wishing you many positive results in 2011!

kkstef's picture
Posts: 706
Joined: May 2008

Maggie, I am so sorry that the news was not what we were hoping for! I know you are anxious to get the results of the er/pr test and we await your update.

I believe that all of the positive healing steps you have taken and continue withy will have a huge impact on your ability to kick this cancer in the butt! It is frustrating to hear about all of the steps our sisters take in combatting this monster and with such varied results. YUP...truly a crap shoot and I am counting on you to win this one!

Am also glad that you have found a shaman to work with....that sounds great!!

Wishing you the very best and keeping you in my thoughts.....sending you positive energy!!


maggie_wilson's picture
Posts: 616
Joined: Nov 2009


thank you so much for your responses and encouragement and support. i do think some of the things i've been doing these last 7 months have made a difference, and i'll continue them. i do have a little faith in the hormone treatment, but am realistic about it. still, it buys me two months. then i'll see the second opinion doc, and maybe even a third one who specializes in immunotherapy at ucsf. can't hurt. it's just the logistics of getting all the info to them; it's a full time job in itself.

i'm actually feeling pretty good, so that makes a huge difference, and am now doing a lot more visualization, and listening to the shaman's tape every day, and saying mantras, and thanking my heart and breath for continuing, and asking them to please continue. sounds a little out of the ordinary, but i do believe that what we say to ourselves makes a difference. i do need to have more gratitude for all that i do have (but never, ever, ever for cancer!) the shaman really is out of the box in so many ways, yet very sensible. he urged me, if i were to get chemo, to get a biopsy of one of the hot spots, since they couldn't do it on my para aortic node because of its position. i would then get an assay to see which chemo might work best; why do a hit- or- miss chemo, if it's possible to know which might work better? anyway, that's my plan, who knows if the doctor will agree, but i do recall my surgeon once saying that if there were a recurrence, that would be the time to have biopsy and assay. so, that could happen. i'd try just about any treatment to avoid chemo, it's my last resort. but, if it's necessary, then so be it. i hate to say it, but i'd so miss my hair, to lose it again now that it's become again the mop i'm so used to and appreciate. sigh.....

thank you again, sisters, for just being you, and being there.

hugs and sisterhood,

Posts: 134
Joined: May 2010

I totally agree with all of you. This cancer thing really stinks. Don't we ever get a break! I don;t know about you but I even hate saying the word. We have all been through enough just go away and leave us alone! I am glad to hear the lesions are small, but I am happier to hear that over all you do feel well. Keep getting stronger.
I like your plan of assay exams to see what would help the best. You are a tough person and I know that these ceels don't have a chance with you in charge.
Love you lots.

Songflower's picture
Posts: 631
Joined: Apr 2009

I think you made a good decision with the hormone therapy. I took tamoxifen years ago for breast cancer and only had hot flashes. I never took megace. These two drugs do not age you; the aromatase inhibitors take every drop of estrogen out of your body and they do age you (skin gets dry, joint pains).

I will keep you in my prayers.


Kaleena's picture
Posts: 2064
Joined: Nov 2009

Hi Maggie:

I haven't been on for a few days and was so sorry to hear of your recurrence! Well at least it didn't light up like you thought it might. Please know that I am keeping you in my prayers that these little "things" will disappear.

I am glad you are feeling good. OH my. What an emotional rollercoster we are all on! But it seems that you have a good plan. Having a plan somehow emotionally makes us stronger since it makes US in control. So what I guess what I am saying is that you are a STRONG person.

Sending {{{HUGS}}} your way!


Always Hopeful
Posts: 234
Joined: May 2010

I'm so sorry to hear of your recurrence. In fact, I'm getting so fed up with this CANCER crap that I want to suggest a "Kick Cancer Out the Door" event! Tomorrow night, I'm going to find some easy to kick piece of garbage and right before midnight open up one of my doors and literally kick it out that door, screaming "CANCER, I HATE you, I HATE you, I HAT you!!! Get out of my life AND don't come back!!!" I almost feel better already just writing this down! So how about it, Sister Warriors...let's all kick cancer out the door tomorrow night, right before midnight. Ww can then welcome in 2011 with a clear mind, a warm heart and a positive outlook that 2011 will be one of NED!

Peace and hope, JJ

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

This just sucks. Hope the hormone therapy does help. That would be wonderful.

Sending positive thoughts and prayers your way

maggie_wilson's picture
Posts: 616
Joined: Nov 2009

thank you sisters for your kind thoughts and words of support and encouragement. they mean a lot to me. thank you especially, diane, for the info: re: tamoxifen and megace, clearly i was not given correct information (not by a doctor). i just got results of my pr/er, and i'm er+ and pr-, seems weird. in any case, maybe the hormones will help.

thank you all again, so much,

hugs, maggie

TiggersDoBounce's picture
Posts: 413
Joined: Oct 2009

Sending prayers.....


norma2's picture
Posts: 486
Joined: Aug 2009

I have been offline for several weeks. I am rooting for you dear, Maggie.
Sisterhood, Norma

daisy366's picture
Posts: 1493
Joined: Mar 2009

So sorry I missed your post until today. I'm sorry for the recurrence news for sure and echo Linda's sentiments.

You, however, are one positive person who in my mind is doing all the right things. I like your attitude, your approach to cancer treatment, and what you are doing in the alternative treatment arena.

And may you, Linda, and all of us continue to shop at those post-holiday sales. May we all live long and prosper in health and happiness.

Love and prayers, Mary Ann

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