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Treatment Plan for second recurrence of UPSC

daisy366's picture
Posts: 1493
Joined: Mar 2009

I had interesting conversation with my doctor this week. I was very nervous dealing with second recurrence in lymph system. Biopsied tissue sent to Caris and this report was used to come up with new plan - hormone therapy with letrozole (Femara), an aromatase inhibitor.

It is interesting that Chester, the UPSC beast, has morphed in the last 3 years from hormone insensitive to hormone sensitive. So doc wants to go this route in effort to give MOST treatment with least side effects. It would not have been an option without this Caris report. I asked doc what he thought about the report and he said, "it's the best tool we have now". I urge all of you to discuss having this done whenever you have a biopsy!!

No radiation because disease dispersed in lymph, not concentrated. And no chemo now. Hopefully this new regime will do the trick to knock it back or keep stable.

I'm happy that the monitoring will be close. Monthly bloodwork and quarterly PET/CTs.

The only thing I am not happy with is the potential side effects. Weight gain and swelling plus hotflashes and others much like chemo. I have started counting calories, will continue my 3 mile walks, and will return to the plant-based diet to give as much ammunition to fight this monster.

Today is day 1 of new treatment.

Marching on with you all, Mary Ann

Rewriter's picture
Posts: 497
Joined: Dec 2009

It sounds as if you have a great gyne-onc and a very sensible plan. I'm glad, too, that you are doing everything you can to effect a positive outcome. I have to start the three-mile walks myself, and you are inspiring me.

Sending warm and encouraging thoughts your way.


jazzy1's picture
Posts: 1385
Joined: Mar 2010

You're an inspiration!!! Almost like the energizer bunny...keep on going and going and going! You have a few side steps, but by God you get right back up on the big horse and keep on riding...no looking back.

I so appreciate your tenacity and positive attitude...think it has rubbed off on me as well. Glad you can work with a wonderful doc and trust him...not all of us have that relationship.

I'll meet you on the walking track .... :-)

california_artist's picture
Posts: 865
Joined: Jan 2009

Thank you for sharing the information re Caris. Sounds like a very useful tool in setting out a plan of action.

First days, make me think of first days of school and this is also a new journey. Maybe a picture is in order to mark this day.

You are in my heart. I will try to follow your lead, by being more diligent in my walking routine.

Best to you and yours,


Kaleena's picture
Posts: 2064
Joined: Nov 2009

Mary Ann:

I am glad that you got to have your tisse sent to Caris. It seems that you have a great doc. Love your positive attitude and your approach to your new treatment.

Marching with you!


kkstef's picture
Posts: 706
Joined: May 2008

So happy to hear that you had such a good visit with your Dr. Very interesting to hear how "Chester" has morphed over the past few years! Sounds like Caris delivers some very good info and your Dr. is obviously receptive to the results...that is even better.

I remember you mentioning the DVD "Forks over Knives"....I have been on the waiting list at the library for MONTHS and just got notified today that it was now available. So, will check that out, thanks to you suggestion.

You are way ahead of me in the walking department....I am only doing 1/2 that much a day. Will definitely need to bump it up. I will try to keep up with you on your walks.

Keep us posted...and a big hug to you!


Ro10's picture
Posts: 1579
Joined: Jan 2009

A plan that has the least side effects sounds good too. I do hope that the hormone therapy works for you. I hope that Chester goes away too.
Continue to keep that positive attitude. It will work wonders for you. Good luck with your plant based diet, too. Keeping you in my prayers. In peace and caring.

Posts: 130
Joined: Feb 2011

It is very interesting that your cancer morphed from hormone insensitive to hormone sensitive. I was not aware that could happen. I learn new things on this site daily. Thanks for posting this information. Good luck with your new treatment and diet. I will be thinking of you.


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

Welcome to my world, MaryAnn. I take Arimidex for ER+ breast cancer. I was scared to death to start taking it because of all the side effects you mention. They are terribly incapacitating for some women. Just to let you know, I have no side effects. Zero. Any weight gain or loss I have seems to be completely relevant to what I put in my mouth (or not) or how little or much I exercise. If I sit and eat French fries, I gain weight. It does seem to go on easier and come off harder, but I'm not sure I can blame that on the Arimidex as that seemed to happen to me with menopause (prior to cancer). My oncologist told me that while all of the AI's have the same side effects, women may have different ones on different AI's, so don't dispair if you do have side effects, another one might not cause them.

I hope you have no side effects on Femara and it does its job. The AIs are definitely known to be effective in keeping ER+ breast cancer at bay. So happy to hear you're not having to start standard chemotherapy for this recurrence.

I didn't have UPSC nor have I had a recurrence, but I feel protected by being on Arimidex. My breast cancer oncologist made a point of telling me it's also used in the treatment of endometrial cancers. Even though I don't "need" it for my endometrial cancer since I'm NED, it helps my mental health just knowing it might play role in keeping it away. I may be switching to Femara soon just to see if the Arimidex is contributing to my hair not fully returning after chemotherapy. Oh, that's a side effect they might not have mentioned - hair thinning/loss.

Best of luck to you.


daisy366's picture
Posts: 1493
Joined: Mar 2009

Yes, I read that about hair loss. Boy, they sure cover all the horrible side effects on the info sheet. But after all that there was some interesting pep talk and (almost caring) coaching which I thought was quite cute on a medication info sheet.

My hair thinned considerably on top of my head after last treatment of carboplatin. I sure can't afford to lose much more of that or I'll look like George Costanza!!

When do you take yours. Since sleep problems was listed I took in morning. I'm glad you are not getting any side effects - that's encouraging. No hot flashes either?

Take care. MA

Posts: 96
Joined: Nov 2011

Mary Ann, I am so happy that you wont have Chemo. It sounds like you have a very good medical team for you to receive the appropriate treatment plan.
I heard tha my HT therapist located someone in your area to help you with that.
My HT has been wonderful for me to get through this.
After my treatment I am going to volunteer my services in her practice my appreciation for all the whole practice has done for me and all the other cancer patients. She even gives them rides to doctors offices if they have no one.

I pray for all cancer patients it's a tough road to travel.

Always here for you, Irene

CindyGSD's picture
Posts: 191
Joined: Aug 2011

Sounds like you have a good plan in place and what a relief not to have to have chemo. Hopefully the side effects will be minimal or non existant and you will be able to enjoy your spring and your long walks. I need to start walking.

Take care,

HellieC's picture
Posts: 524
Joined: Nov 2010

Sounds like a good plan, based on sensible reasoning. My onc is a great believer in hormone therapy for re-recurrences of hormone sensitive cancers. She says she has seen patients who have taken it for years and kept their cancer at bay. That sounds good to me.
I hope you don't get any side effects - my mother took Megace (another hormone treatment) and never had any problems with it.
Wishing you well

snowbird_11's picture
Posts: 160
Joined: Oct 2011

This 'no-chemo' treatment plan can be so manageable - and long term. Hopefully side effects, if any, will be minimal for you and it will be like no treatment at all! Saving your body from the onslaught of chemo is so important. Now I will have to pick up my pace to get back to my 3 mile walks to keep up with you - I've dropped to 2 miles in last few months.

Here, supporting you, every step of the way!

daisy366's picture
Posts: 1493
Joined: Mar 2009

Annie, Helen, Ro, Cindy, Suzanne, Irene, Pat, Karen, Kathy, Claudia, Jan, Jill, and all,

Thank you so much for your encouragement. Nice sisterhood!

Have the very best day today, ladies. Mary Ann

Posts: 683
Joined: Apr 2010

Mary Ann: So Glad you have a good Doc and have a good plan on the way. I am battling with my daughter's Leukemia and she is about to go to her second phase. I cannot tell you how heartbreaking this is. Be well all of you. June.

Posts: 64
Joined: Oct 2010

Sending positive thoughts your way. Have always appreciated your positive contributions to this board. Hoping this treatment plan will put you back to NED. Keep up with that great exercise plan! Susan

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

I take my Arimidex in the morning with my other meds. I have no issues with sleep. I occasionally have a teesy hot flash. Interestingly, I had few hot flashes when going thru natural menopause. I wonder if there's a relationship?

Another note about the side effects, sometimes they get better. I have a good friend who's been on Arimidex for 7 years (she's afraid to go off them) and had SEs initially, but they went away in time.

I know this is a breast cancer thing, but my oncologist told me that for my breast cancer, an AI is every bit if not more important than chemotherapy. I wonder if that will also turn out to be true for some uterine cancers.

I just feel lucky to not have the side effects. I hope you don't, either. I do exercise.


sunflash's picture
Posts: 197
Joined: Aug 2011

Best wishes for a very long remission for you against this beast! I love your positive attitude and your resolve to fight this every step of the way.
I've heard great things about hormone treatment for breast cancer......so this sounds like a solid plan for you.
Sending hugs and prayers for a great outcome!

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