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recurrence after 1 year - new thread

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

I was asked to start a new thread as my Any UPSC Who had Observation is getting quite long. In a nutshell - 12/13/16 biopsy UPSC; hysterectomy 1/25/17; was a stage 1A ;did 3 rounds carpo/toxol; 5 brachy; blood clots but finally felt done 12/13/17! Alas. 2/13/18 ( I am just now seeing all these 13's) , during pelvic exam at 6 mos., 2 tiny lesions found on vaginal wall! Began 25 rounds of pelvic radiation on March 7; was to begin ciaplatin today but snow and below temps in NC prevented me from going today and I must say was relieved. Sent my onc an email with all my concerns re the side effects and a request for the tumor board ( thanks to this site I found out about these) and they will review my case on Monday. My questions are mainly about my age -78- and the quality of life I can have. I will also ask some questions tomorrow when I meet with my onc radiation doc who has been so honest with me. He has only see 3 recurrences on wall in all his years - thankfully he is not old,old ( : Most are on vaginal cuff. So, not only do I have UPSC, it has to come back in an odd place. I am trying to learn to not have to be so in control but after all these years, it is harder than one imagines. Again, I am soooooooooooo thankful for this site as you have given me so many ideas and information that I would not have had.

I will continue to post here as time goes on so perhaps my experience will help others.  

evolo58
Posts: 293
Joined: Dec 2017

Well, let's hope that the docs zap these annoying cockroaches somehow, and you can live many years.

I think that doctors are more and more aware that many patients do their research as well. This is huge decision, and you need to have all the facts in hand. Hope you can get them and make the right decision for the best quality of life.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

Miss Faye, keep us posted.  I hope you don't consider 78 old Wink

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

Completed radiation 8 on Friday - so far- so good. Have decided to go with the low dose Cisplatin starting March 20. My radonc spent over an hour showing me my scans and how close l.nodes and blood vessels are to lesions and why they want to do all they can to kill those bad cells while localized. She was so patient and actually gave me an anatomy lesson as to what those vacant places are since my lady parts are gone. I was so impressed with this young woman and her ability to show me why things are needed and done. Am not from Missouri but am a mule who has to know why and one has to get my attention. One thing about long term radiation, one meets lots of folks whose app't. is before or  right after yours.  And yes, No Time for Cancer, 78 is old but not ancient.Laughing  So the 3rd journey is under way and i am feeling good as to the choices made.  Will check in next week after chemo 1!  Only thing I wish was that someone had told me to have the hysterectomy in 2008 when they saw shadow in uterus which after a D&C proved to just be fluid. Was that the harrbinger of UPSC?

DF

Jairoldi's picture
Jairoldi
Posts: 206
Joined: May 2017

It sounds like you have a solid plan and an attentive radiologist. Best wishes as you take on another round of chemo.

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

Had the cisplatin on Tuesday. I was delighted with the way everything went. Saw the gynonc first and she discussed the results of tumor board. As I had expected, they were split on the cisplatin but most felt it was certainly worth a shot. The male RN that did the infusion was the same age as my RN son and he did a fantastic job finding a vein and then explaining all the bags hanging. So many things are given with cisplatin - liter of saline, amends(sp) that contains Mg and K; then the cisplatin that is diluted and finally more saline flush - 5 hrs. But was visited by 4 different people who went over side effects, anti nausea meds, diet, etc. I was so glad to have all this information. I am one who wants to KNOW!!

The tumor board hinted that they think there is cancer in lymph system although nothing shows so far. They think that is why I have the vaginal wall lesions. So for now, just one day at a time. Radiation #10 today - 15 more external - 1 or 2 more chemo as tolerated- then 5 brachy on the lesions.  

I am truly at peace with everything as I feel I am heeding the best advice and if cancer comes knocking again, I'll deal with that then. 

As always, DF

evolo58
Posts: 293
Joined: Dec 2017

I hope this works and you can get back to your horses again for many more years. :)

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

#13 external radiation and #1 cisplatin has sort of messed up my weekend. I am tired, but did do the steriods so not wiped out and now know how to taper. They do help one muster on. I have had the best of care this go round, and part was because I pointed out the problems of not telling me everyting I needed to know first time around.  As a result, I am able to go forward and not be fearful. I have 12 more external and 2 more cisplatin if I continue to tolerate well. Then 5 brachy if needed.  Looks like mid April will find all this behind me and I will get some idea of what the future holds. No guarantee on anything, but feeling positive as I move forward. Family and friends are all terrific.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

Miss Donna Faye, for me, radiation caused fatigue I had no idea existed!  Remember, rest is restorative so give in to it too.  Radiation can continue to 'work' for up to six weeks post treatment.  The warriors always touch my heart.  Hugs dear one.

Northwoodsgirl
Posts: 527
Joined: Oct 2009

DonnaFaye, Thank you for posting how your treatmenuts are progressing. It sounds like you are doing as well as can be expected! You are blessed to have such a good care team. Your son is an RN...you must be very proud of him! We all know what a difference it makes who provides our care. Wishing you strength and peace as you move ahead with your treatments. 

Lori

EZLiving66's picture
EZLiving66
Posts: 1345
Joined: Oct 2015

I'm sure hoping by mid-April when this treatment is behind you, the cancer will be too.  All my best!!!

Love,

Eldri

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Donna Faye you are keeping a positive attitude whixh can be a big help. Also, wonderful to have family and friends in there fighting with you. Keep up the good fight :) Prayers

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

Donna Faye, so glad to hear that you are tolerating the treatments well. Here's to April bringing you lots of good news and a big review mirror!

Love and Hugs,

Cindi

SF73
Posts: 264
Joined: Oct 2017

So glad to hear that you are tolerating the treatments well. I join others in wishing you a cancer free future! I have been following your journey and am so impressed with how you receive new information and analyze all options available to you and calmly decide what is best for you and your family. Hugs!

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

My beautiful daughter picks me up at 7 -Radiation #15 at 7:30 a.m. - best 3 ladies work me in so I can go home after chemo and make the day easier. It is truly the kindness that helps us through all travails. Chemo begun at 9 by sweetest and most skillful nurse - I have no port so has to patiently find vein in my poor overused right arm. Things go well and my daughter is able to go on to work at 10 when she is replaced by a friend of mine who entertains me for the next 3 hours. Finished by 1:40 and home by 2.  Able to just curl up in my chair and doze. Amazing the meds they give you now that seem to make things go well.  In bed by 10 and now up at 6 and feeling a tad shaky but meds done and b'fast. eaten and just resting. I have come to a very peaceful place in this journey No longer worry about IF they can find a vein, or If I will feel sick - I just get up and go and do it.  In three weeks treatment will end and in May we will see where things are and perhaps get a glimpse into the future.  

Once again I must thank this site and you who join it. I need to converse with you by this method and your comments are always so spot on. We who walk in the others shoes know what this support means.  Thank you from the bottom of my heart. 

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Thank you for sharing your journey and keeping us posted on the experience. You are truly an inspiration.

MrsBerry
Posts: 102
Joined: Dec 2017

DF, I think of you as your avatar, galloping headlong into whatever comes, determined to meet it and move past it. You are a formidable woman! ((Hugs))

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

Well, ladies, I took your advice and did the 3 rounds of cisplatin to enhance the radiation and yesterday was #3! As you shared, it was not too bad and now I know I did my best to stop the cancer. Not sure I would have w/o your encouragement! Now 5 external rads and 5 internal and done by 1 May. The worst part was a nurse in infusion who did not read the chart about my hard to find veins and made quite a mess of the start. I was already getting up to leave sans chemo when my oncologist's nurse appeared with the IV team - a lady and her ultrasound machine. She got it going and all went well from that point onward.  For reasons unknown to me, I have never been offered a port!!!!

So, again, I am grateful for all of you who suggest and encourage and help us make decisions that better our lives. I am so looking forward to summer and some long slow horseback rides in the woods.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

Glad to hear you are done with that.  I can't remember if you had radiation the first round of treatment?  For me it brought on fatigue I had never known.  I believe that rest is restorative so I didn't fight it.  Summer (heck SPRING) is slow to come to Indiana, so it looks like you will have time to get your treatment done before summer to enjoy the horseback rides. 

rcdeman
Posts: 256
Joined: Aug 2016

Dear Donna,

I am so glad you have so many supportive friends and family around you during this. It's also great to know that your medical team seems to be on top of it and are actually explaining each step of the way to you. Love your positivity. I just wanted to let you know that you and the ladies on this board are always in my prayers.

Thanks for your consistent updates. It's a blessing to keep up with you ladies when I can get the time from life and stress.

Best,
Rebecca

ConnieSW's picture
ConnieSW
Posts: 1442
Joined: Jun 2012

hope the next stage goes as smoothly. 

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

Had my last internal rad today! Finished the 25 external 2 weeks ago and 4 brachy today. My radonc doc is amazing and he has been so careful to not over radiate as that can cause problems and he knows I prefer quality to quanity. I will be followed every 3 mos. for a year. Have been down this road 2 times before so know the drill. Have accepted that this may get to be a well rutted road but am good for it. I finished this time with only side effect being that Imodium and I are very good friends. I am not too worse for wear - have lost 10 pounds but not a big deal as I had some to lose. Very tired of bland food and look forward to a good steak.  For now going to get the innards settled down, get back to some exercise and some slow walks on a gentle horse. 

Again, I am so thankful for this site. Our sisterhood is not one of our choosing but we are here not only for ourselves but for those who follow after us.  Hugs !!!

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

Congratulations, Donna Faye! I know you had great trepidation about this course of action but you've come through it like a champ. Have a big ole steak and celebrate!

Jairoldi's picture
Jairoldi
Posts: 206
Joined: May 2017

Way to get 'er done! 

Violet123
Posts: 26
Joined: Nov 2017

Congratulations!  Thanks for sharing your journey.

EZLiving66's picture
EZLiving66
Posts: 1345
Joined: Oct 2015

I'm so glad to hear your treatment is done.  Now, time to rest and heal. (((Donna)))

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

Donna Faye - congrats on finishing again!!!!! So glad that is behind you and that you have plans to ride again soon. I hope you heal quickly and can enjoy that steak!

Love and Hugs,

Cindi

ethibault1's picture
ethibault1
Posts: 2
Joined: Apr 2018

Hi everyone- all your stories are inspiring, and I remain hopeful. Hard to do sometimes, so I come here to find commonality. I am stage IIIc, recurring in the omentum, bladder and peritineum. City of Hope for further treatment. Thanks to all of you for sharing your stories.

cmb's picture
cmb
Posts: 358
Joined: Jan 2018

I'm glad that you've found the information on this site helpful so far, but very sorry that you've had to find your way here as a result of your recurrence.

We'd like to hear more about what is planned for your treatment or other concerns. However, sometimes starting a new topic that is specific to your situation will result in more responses than adding onto an existing, longer thread like this one.

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

Well, have finally gone several days without Imodium - yippee!!! I am still very slowly adding foods but most still rather bland. I started probiotics last week and do think it helped a lot. My doc did not suggest but read where many of you did and it helped with the bowel issues. Am feeling good and lookig forward to a summer of short trips and just having some good times.  Hugs to all of you and best to all for our future. Will check back in a few weeks!

Jairoldi's picture
Jairoldi
Posts: 206
Joined: May 2017

Glad you got through your treatments and on to mending and resting up for those short trips this summer. 

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

Today was my 3 mo. check from finding recurrence; 6 weeks from last rad! Gyn/onc found a small bump that she did not like but called rad doc to see if she should biopsy or not. I learned that rad beams keep working 3 mos. after last one, so they and I decided to wait for 6 weeks and see if it is gone or not! Option if not is surgery. Location is very near rectum so would have to be very careful. At this point, I am okay with waiting and hoping the bump is gone. If not, will cross that bridge when I get there. So, ladies, will get back with you in six weeks. Enjoy the summer - I plan to!

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