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mom diagnosed with UPSC foregoing treatment and surgery

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

Hello all you brave women. thank you for sharing your stories. i am at a loss and hoping for some feedback. my lovely mother (age 63) was diagnosed with UPSC in august and after being told that she would need a radical hysterectomy etc for staging, she opted not to have the surgery. She started having symptoms last year in the fall and her Gyn wanted her to get tested then and she didn't and now we are a whole year later and her symptoms are getting worse. she has been seeing a holistic healer at a wellness center for the last 2 months. she has been on a strict raw food soup/liquid diet and has had 29 deep colonics. lymph therapy, essential oil massages, saunas etc. all wonderful for the body, but i don't think it's going to cure her cancer. she is a woman of deep faith in god and in the body's innate ability to heal. she has always lived a healthy lifestyle and adhered to an organic food diet etc. and this is why it made sense to her to try and heal herself. we as her children are trying to respect her wishes and remain positive, but i am at a point where i need answers and i really want to be realistic. this is cancer after all.
her wellness lady has told her this week that she wants her to see a doctor. finally. she is in a lot of pain. she is nauseous all the time, has difficulty eating and has lost some weight(we attributed this to her raw food diet), she is now extremely fatigued and her stomach is distended and it is painful for her to urinate or have bowel movements. she has lots of cramping and backaches.
i think she believes this is just the result of a "healing crisis" or breakthrough etc. or something unrelated to cancer. i think it's because the cancer has spread.
i just want to know if anyone else out there has experienced someone they love surviving this cancer without conventional treatment or is my mom in deep denial. what can i do to support her but also to be realistic and encourage her to seek better answers? and treatments?
i don't even know what to feel yet because she had me pretty convinced that she was going to "kick it". i have read so much about UPSC and how aggressive it can be and my common sense screams at me for her to get treatment if it's not too late. perhaps we have all been in denial. i'm starting to get scared.

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

As my gynecologic oncologist says "UPSC is a nasty character; one of the most aggressive forms of cancer imaginable". We had a couple of regular posters here who had early stage UPSC and denied chemo and radiation, but I honestly don't know anyone that didn't at least have the hysterectomy.

I join you in being worried for your mother. The symptoms she is experiencing now sound very much like cancer spread throughout the pelvic area; I so hope I am wrong! She needs to see a gynecologic oncologist immediately and get a PET scan to see what's going on. Intervention now could still save her life. Maybe you can frame the suggestion in such a way as that you would like her to get a second opinion now at this 'healing crisis' juncture.

I hold you both in my prayers tonight. (((((hugs)))))

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

Thank you ladies for your sweet, prompt replies and concern. i totally agree with both of you. i have been feeling this way all along and have tried every approach to convince her to at least have the staging done. she has 6 children and 15 wonderful grandchildren and although she may have been very attached to her uterus at one time, she no longer needs it and most certainly can do without it if it would save her life. i am certain her chances would be so much greater if she were to get the surgery and supportive treatments. she could do all of her natural healing along side of conventional. everything i have read from allopathic doctors and naturopaths alike state that she should at least "debulk" to give her immune system a fighting chance. my mother is a highly intelligent woman. she was an EMT for years and has always taken a keen interest in the medical field. it is surprising to me that she is holding so steadfast to only wellness treatments. i think she must just be scared and this is her way of feeling in control. her symptoms certainly do sound as if the cancer has spread. from everything that i have read about this type, it is rapid growing and she had the first symptoms last year!!!!
i am hoping with all hope that i can convince her to get some more info and to be open to trying other treatments. otherwise, i fear we really are going to lose her. i don't know how much time we have left. she is seeing a holistic doctor tomorrow and i hope the doctor has enough wherewith all and integrity to send her to an oncologist.
thank you so much for your thoughts and prayers. mine are with you as well. i will keep you posted. Malia

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

Malia:

I am sorry to hear about your mom. But I agree with the other ladies that your mom should at least have a total hysterctomy.

When I was 44 years old, I started having pain, problems with my bowels, etc. I was never on any medicines, was pretty active, etc. Then I started taking motrin daily. Finally, the pain was getting so bad that I curled up in a ball. It felt like someone was taking my insides and twisting them. I had a hard time eating. They did a laparoscopy and found out I had severe endometriosis and therefore needed surgery (I had 3 C-Sections too). They didn't believe I had cancer, but put me on lupron for six months to soften the scarring. After surgery is when they found the cancer and had to have another surgery for staging (which all came back negative). I had a port put in and took preventative treatment. Then followed up with brachytherepy.

I am now 50 years old and am not taking any medicines not even motrin. Your Mom really needs to have the surgery to feel good. It is tiring to be in pain and it is a strain on your body. Also, tell your mom that things have changed. Chemo is so different than it used to be. There are many methods.

My prayers to you, your Mom and your family.

Kathy

P.S. I used to be an EMT/Paramedic when I was younger.

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

mom's having a cat scan of her abdomen and pelvic region right now! she liked the doctor and i am awaiting any news. keep you posted!

llight
Posts: 99
Joined: Feb 2010

I'm so sorry to hear about your mom. I, too, share Linda's concern and urgency for her to see a doctor ASAP.

For what this is worth, I wanted to share this. Patrick Quillin, PhD, RD, CNS wrote a book called Beating Cancer with Nutrition (title says it all, right?). In his chapter, "Rational Cancer Treatment: If I had Cancer What Would I do" he writes:

"I would use...restrained cytotoxic therapies to reduce tumor burden...."

I think it would be wise to share this with her. This guy is a RD (registered dietician) and CNS (certified nutrition specialist) and he would use conventional treatments as a part of his overall (incl natural) treatment plan.

Please keep us posted. You both are in my thoughts.

nempark
Posts: 683
Joined: Apr 2010

Hi I have been seeing a herbalist for almost one year now and in the beginning I was sceptical. But during our many conversations, she told me not to be fooled THERE ARE TIMES WHEN YOU HAVE TO SEEK CONVENTIONAL MEDICINE. I had radical surgery, chemo and then my herbs which I really believe in and I am still taking them. Just as the other ladies said, Please tell mom go for the operation and then she can follow up with the holistic medicine. Medicine has come along way and many of us on the board can attest to that. I send your mom my best wishes and prays that our great God gives her wisdom to see that she has to have that hysterectomy. Tell her her grandchildren and all of you need her. I send you comfort.,

llight
Posts: 99
Joined: Feb 2010

Malia,

I'm wondering (if possible) if printing out this thread and faxing to the holistic doc or giving a call tonight and leaving a message on his/her voicemail expressing your concern might push the doc to give a mention about conventional treatment. Saying you've done some research and have talked to others with this cancer may give a boost to your message. Just a thought.

Again, please keep us posted.

llight

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

I think you need to make your justifiable concerns clear to your mother's 'healer', and record the conversation with their permission. I am against unwarranted litigation, but truly, if this 'healer' does not at least encourage your mother to see a gynecologic oncologist, he/she should be sued and put out of business to stop such irresponsible unethical practices.

(I am going through something like this with my sister who has a horrible circulation problem of some kind that is causing her feet and ankles to be grotesquely discolored and affecting her ability to walk up stairs, etc., and seeing only a 'healer'. I fear that she will lose her feet under his 'therapy plan' and know that the supplements he is giving her are expensive and probably worthless for this problem. I not only want to sue him and put him out of business; some days I want to drive down there and slap some sense into them both!) Sorry for the venting.

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

Love the venting linda! don't worry, i do not offend easily! honest communication is of the utmost import to me. i have been trying all along to be respectful of her choices and to stay out of her business of healing choice, but i have had the same thoughts all along about her wellness nurse. i know these women are people that my mother trusts completely and i don't doubt their dedication and love for my mom, but i do think it is irresponsible to only know recommend she see a doctor. i think i would have only agreed to see her if she had come with a proper diagnosis and then make a treatment plan in conjunction with her gyn/onc. i am at the point now that i don't care as much about her privacy as i do helping to keep her alive. she actually does want to stay alive. she is comfortable with death and "meeting her maker", but isn't ready yet. i should say not! she is at her appointment right now and i am eagerly awaiting her call. keep you posted.

i am so sorry to hear of your sister's circulation issues. how painful. i know that naturopathic medicine could be a useful adjunct to conventional in this case, but ONLY after a diagnosis and treatment plan. medicine is not the devil, nor are doctors. we just need to be active participants in our care and use all methods available to us. i do believe the body has amazing healing abilities, but you gotta know what you're dealing with to choose the right method. have you or your sister ever read any of dr. weil's work? even though he has become one of today's modern gurus, he is intelligent and i like what he has to say. he offers real,practical advice and he is a trained allopathic(conventional) doctor with naturopathic training as well. he is head of the integrative medicine program at arizona state i believe. might have something interesting to say about your sister?

thanks again for thoughts, prayers and insights everyone.

kepp um coming.
Malia

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

Malia, I am so sorry to hear about your Mom and it is wonderful that you have tried to be supportive of her privacy and her decisions about her treatment. Her "healers" do have a responsibility to encourage her to seek a medical opinon.

I definitey agree that you do indeed have the right to try to do everything you can to make sure your Mom has the tests needed to determine what would be the best treatment plan for her. A gyn-oncologist is in the best position to explain everything to you and your Mom!

I am happy to hear that she is having a CT scan as that is a good place to start. I know the thought of surgery can be frightening, but it is such a small part of the journey! Please keep us posted. Your Mom is so fortunate to have such a caring, concerned advocate as you! Keeping you both in my thoughts!!

Karen

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

thank you sweet karen. i will certainly keep everyone updated. i am hoping for news, any news after the cat scan just so we can decide how to move forward. it has been over a year now since her initial symptoms, but only since august since her actual diagnosis so i am hoping even with this lost time, that she has a chance. she's a fighter. now i just want her to use everything in her arsenal!
she sure has a lot of good thought and prayer coming her way. if anything at least that is a source of love and comfort.
Best,
Malia

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

Hello all you beautiful, brave women,
here is the latest- mom went to see surgeon and oncologist. with her cancer spread it is looking pretty grim, but we will not give up. she has colonoscopy and endoscopy on monday and she had her porto cath put in on friday and she ghas her first chemo treatment on tuesday. doctors say chemo, surgery, chemo. my siblings and i are going to visit her on thursday. she and her husband are a bit leery of all of us coming to visit becasue she is afraid she will be very sick and weak. we are going to be with her but try and stay as calm and uplifting as possible and stay out of the way. her husband is feeling very protective right now. he wants to be the one to be with her throughout all of her treatments etc. he is bordering on hostility towards us kids, but i am just going to bring the love and hope that this doesn't turn into some sort of contest. she needs all the love and support she can get. i think everyone is touchy and tired. probably nothing compared to what's to come. everything has moved very quickly since her current diagnosis to chemo in less than a week.
keeping the faith.
and keeping all of you in your various stages of healing in my thoughts and prayers as well.
thank you all,
Malia

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

llight- good idea, I like it! thank you!

Ocean1
Posts: 23
Joined: May 2010

I am so sorry to hear about your Mom. My Mom was diagnosed in May 2010 with the second most aggressive uterine cancer and we are throwing everything at it that we can. Surgery and now into our 5th month of chemo every week. I do understand how hard it is emotionally for you as her daughter. I cannot say that I relate to the holistic approach your Mom is taking but it sounds like this is a very strong part of her life. I can only say that surgery could get what cancer is out of her and then she could use the holistic approach and diet along with other treatments. We seriously worried about Mom starting chemo as we were still thinking of the "old" chemo and, I must say, chemo treatments/side effects have changed and there are so many ways to control what side effects do occur. Keep us updated on how the CT went. You and your family are in my prayers.

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

i do want to add my voice to those of us here who are strongly advocating that your mother see a doctor, and once she gets the results of her ct, probably have surgery. i am one who can relate to your mother's holistic approach, however, i went with surgery first, then the standard chemo. it's been a year, and i've been seeing an acupuncturist, a body worker, walking every day, changed my diet completely, etc., but probably wouldn't be alive today without the surgery and probably the chemo.

as the head nurse at my oncology explained it, the surgery is to get rid of as much of the cancer as possible that can be seen, then chemo to get at whatever cancer cannot be seen, in the hopes that the body's own immune system can pick up from there. maybe if you explained a little more to your mother about this, she might understand. clearly her healer thought she needed to see a doctor at this point, and she needed a doctor to recommend a ct scan, so it does sound like she's in the medical system at this point. i'm so sorry she and you and your family have to go through this, cancer is such a tough disease to know how to treat, especially after the basic surgery, chemo and in some cases, radiation.

i'm thinking of you and your mother, and hoping for the best outcome possible. don't give up on your mother getting medical help, even though of course you respect her need to control much of her own decision making. hopefully you can find a way to support her and at the same time let her know she needs to be under the care of a gyn-onc. that probably is the best support you can provide. but i understand how tactful and careful you need to be.

best to you,
sisterhood,
maggie

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

Maggie and Ocean1,
Thank you both for sharing your stories and thoughts and comments. It is so nice to have such brave and powerful women around on this planet, although too bad it hasn't been under different circumstances. I am sorry for any and all suffering you may have endured and i rejoice in all the progress and healing you have had thus far. i will continue to send good thoughts for your continued good health!

Now for the CT. i didn't get to talk to mom on the phone yet, just via text. this is the result thus far- the scan revealed tumors throughout her abdomen. she is meeting with an oncologist in the next couple of days. i will know more then. i still have lots of questions and i will pursue those answers with vigor. mom seems to be relieved that she has finally seen a doctor actually. i think she knows deep down that she waited too long, but was just so afraid and wanted to believe so desperately that she and god could heal her. i am not giving up yet nor do i think she is. she will go at this next round with as much passion as she gave to her holistic approach. she is one stubborn woman and i'm hoping that she at least uses that to her advantage. i was sad today and cried for the first time. bellowed actually. snot running down my face cry. it was good.
i'll keep you posted.

best,
malia

Always Hopeful
Posts: 234
Joined: May 2010

I'm sorry to hear that the ct scan showed disease progression, but that doesn't mean it is to late for treatment. Hopefully this will all be addressed when she sees the oncologist in a few days. In the meantime, I know you will provide her with the support she needs right now.

Remember, giving up is not an option. I will pray for the strength needed to assist you all in getting through this.

Peace and hope, JJ

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

Sorry to hear about the issues on the scan. You know most everyone of us on this site have encountered the "bad" news. It's unsettling and jolting, but on the other side after a bit of down time, we gain back our inner strengths. As you've mentioned your mom is tough and a fighter, so let her get going.

I know when I heard about the "cancer" in me, I was shacking literally. And...felt sorry for myself and why me GOd!!! Well...after a few hours of the pitty party, I pulled up my big girl pants and said I'm going to fight like mad. Today I'm still fighting and will never give up.

You need to cry and release the emotions of the news. Show your mom you're strong and so can she be strong. With 2 people arm and arm, you can beat this disease.

I know your mom will find the best path for her and you'll be right beside her all the way.

Good luck to you and plse keep us posted....we all care!
Jan

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

Malia, you are such a trooper! The sadness is very normal and can be overwhelming at times. Sometimes a good cry is just want you need...just keep a kleenex handy for those melt downs! Do you have any other family members to help support you and your Mom on this journey?

You may be absolutely right about thinking your Mom seems relieved to see a doctor and it is good that she got in so fast! We are all anxious to hear how things are going and are here to answer any questions we can!

Best to you and your Mom!

Karen

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

thank you for keeping us in your thoughts. well here it is as well as i can explain it with my limited info, she went to the oncologist and she really liked him and trusted him and her experience thus far with the conventional medical field has been very positive. everyone has been kind and quite accommodating with her scheduling etc. since monday, all of her appt.s have been moving really quickly. he has told her that without treatment, she has a few weeks or months left. he is sending her to a surgeon in the morning to discuss options. chemo, surgery, chemo etc... i will know more tomorrow and i will know what decision my mom has made. had myself a few good cries and now i'm just getting myself ready to fly out to see her and to be strong for her.
i will keep you all posted. thank you for your continued prayers and good thoughts.
Malia

Karen, my dear soul, i am having whatever cries and emotions that i need to feel. we are a touchy feely family and so we do not shy away from emotions or try to hide from negative stuff. i think i just in a bit of denial and needed to know what we were dealing with, then the dam burst! there are 6 of us kids and she has a huge network of people who love her and are sending her thoughts and prayers, including wonderful women like you! my sister will go with me to the initial visit then i am sure the whole family will descend upon her small town like a bunch of locusts! i want a little time with her before all our brothers and grandchildren and her sisters. i am sure she will want to see everyone but i want to be a little selfish right now. i will do whatever she wishes actually. she's in charge. lol!

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

Malia:

My thoughts and prayers to you, your mom and family. Your mom will make the decision that is right for her.

I don't know what else to say so I am sending you my hugs (((Hugs))).

Kathy

lmcenin's picture
lmcenin
Posts: 3
Joined: Nov 2010

Hi Malia,

My mom is in the exact same place as your mom is right now. She was diagnosed with UPSC a little over a week ago after being in denial that anything was wrong for over a year. Because she started bleeding heavily, she had to tell my father who took her to the hospital. She never told any of us about the problems earlier.

My mom is already in Stage IV, but it's so important to remain hopeful. She had her surgery yesterday at which time they did a full historectomy, removed her lymph nodes, the majority of her colon, as well as her spleen. She's in good spirits today though, but the chemo treatments that will start in a few weeks will likely be difficult.

I know it sounds terrible, but I keep reminding myself of the people that have been even worse than our moms and have made it through. There is ALWAYS hope.

I'll be praying for you, your mom, and your family. I know exactly what you are feeling, so if you need an ear, you have one.

Linda

Always Hopeful
Posts: 234
Joined: May 2010

I am so sorry to hear about your mom's situation. You are absolutely right to believe there is always hope. Her surgery seems to be quite extensive. Once recovered, continue to pray that she will tolerate the chemo well. Things are so different now with all the premeds you are given.

My prayers and thoughts are with you and your family, as they are with Malia's, at this time.

Peace and hope, JJ

lmcenin's picture
lmcenin
Posts: 3
Joined: Nov 2010

Thanks for your words and prayers. It's comforting to know there are others who understand and are making it through the battle. You are right about always being hopeful. I have heard so many stories about people who were given weeks to live and they are still with us more than 10 years later. Science, hope and inner strength are all important here. God bless you, and my prayers are with you as well as you go through your treatment and recover. Stay strong my friend :) -- Linda

lmcenin's picture
lmcenin
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Joined: Nov 2010
mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

Linda,
Just wondering how you are holding up? and how your mother is doing? how is her recovery from surgery and has she started chemo?

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

Hello all you beautiful, brave women,
here is the latest- mom went to see surgeon and oncologist. with her cancer spread it is looking pretty grim, but we will not give up. she has colonoscopy and endoscopy on monday and she had her porto cath put in on friday and she ghas her first chemo treatment on tuesday. doctors say chemo, surgery, chemo. my siblings and i are going to visit her on thursday. she and her husband are a bit leery of all of us coming to visit becasue she is afraid she will be very sick and weak. we are going to be with her but try and stay as calm and uplifting as possible and stay out of the way. her husband is feeling very protective right now. he wants to be the one to be with her throughout all of her treatments etc. he is bordering on hostility towards us kids, but i am just going to bring the love and hope that this doesn't turn into some sort of contest. she needs all the love and support she can get. i think everyone is touchy and tired. probably nothing compared to what's to come. everything has moved very quickly since her current diagnosis to chemo in less than a week.
keeping the faith.
and keeping all of you in your various stages of healing in my thoughts and prayers as well.
thank you all,
Malia

Always Hopeful
Posts: 234
Joined: May 2010

I responded to the other copy of this posting.

Please keep us informed of how things are going.

Peace and hope, JJ

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

hello everyone!

we just returned from a beautiful visit with our mama. all of our concerns and stresses just melted away once we all got there. we just loved on her. she came to our hotel most days and just rested on the bed propped up by pillows and took naps when she needed and i massaged her feet everyday (she has blood clots in her calves now which cause a great deal of swelling) she is on blood thinner etc to keep this under control. we fetched things for her and fed her and just treated her like a queen. she didn't want all the fussing at first, but soon enough she just lay back and chuckled and let us do it. she had her first chemo treatment the day before we all arrived and although she was tired the next couple of days, she had very little side effects thus far and she had a 5 hour drip! she just perked right up after a few days with us believe it or not. it was just such a lovely time. no fights, no negativity, no ego trips. just sweetness all around. none of us got around to talking about what her plans would be in the case of her treatments not working, but it just didn't feel like that kind of a visit.
she has her next chemo on dec. 8th and the next one dec. 29th. they seem to be pretty heavy doses, so she will see how she feels and how it is working probably after 2nd round. then they will be taking a look at surgery in jan. depending on tumor shrinkage and overall health and whether it will be possible depending on what organs are affected. doctor said he was very pleased with her progress thus far. perhaps just feeling positive about her uplifted spirits.
none of us know what is going to happen and i missed her very much at thanksgiving, but the time we all shared with her was priceless and a blessing.
i am praying and thinking of all of you brave women and your families everyday. thank you for your continued support.

Malia

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

What a wonderful post re: your visit to see your Mom. It sounded like a very wonderful time together and I am so happy for all of you! How did her new husband handle all of this? Hopefully you all recognized that everyone wants the same thing.... A long life NED for your Mom!

I am hoping that her treatments continue to go well and that she will be able to have her surgery soon and get rid of more of those nasty cells!

Your Mom is so lucky to have such a wonderful supportive family...

Best wishes to all of you!

Karen

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

What a wonderful post re: your visit to see your Mom. It sounded like a very wonderful time together and I am so happy for all of you! How did her new husband handle all of this? Hopefully you all recognized that everyone wants the same thing.... A long life NED for your Mom!

I am hoping that her treatments continue to go well and that she will be able to have her surgery soon and get rid of more of those nasty cells!

Your Mom is so lucky to have such a wonderful supportive family...

Best wishes to all of you!

Karen

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

Karen, Kathy, Kaleena, all the lovely ladies,
thank you once again for you sweet words of encouragement.

Her husband handled everything quite well i would say. the first day he showed up with mom at our hotel, he brought flowers for each of us girls including my brother's wifes. it was darling. the night we all left PA, he told me that in all of his years, he had never seen nor felt so much love not only for our mom, but for him and for everyone. he said he would never ever doubt our dedication to our mother again. it was a big snotty tear fest. we siblings love each other dearly, but we don't always get along or see eye to eye, so this was a big compliment and a testiment to our desire to have a peaceful visit with our mom. i don't know when i will go back, i'm just kind of on hold until her next chemo on the 8th.
her doctor said he was really pleased and that her platelets looked great. not sure what all that means and we will get some more info after her doctor appt. again today. i am sure i will be learning all about numbers etc.. soon enough.

hope all is well with you dear hearts!
Malia

Always Hopeful
Posts: 234
Joined: May 2010

It sure does sound like you all had a wonderful visit. Flowers and beautiful sentiments from your mom's husband...how beautiful.

Keep us all informed regarding lyour mom's progress. Prayers and thoughts continue!

Peace and hope, JJ

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

Malia....you could not have hoped for a better outcome!! It sounds like you have let your Mom's new husband know that both of them are loved! That speaks well of how you and your siblings approached things.

GREAT job!! You will never regret this special time together!!

Karen

Always Hopeful
Posts: 234
Joined: May 2010

Dear Malia,

I've been concerned about how the visit went. So pleased you updated us. Sounds like you all had a great visit with your mom...just what she needed! I love the pic, too. She looks quite hopeful and strong...you'd never know she was having any problems.

My continued prayers for only positive responses to the chemo.

Peace and hope, JJ

donalee's picture
donalee
Posts: 6
Joined: Nov 2010

I am 58 and was diagnosed with UPCS but, unlike your mom, I did have the hysterectomy, chemo and soon? to start radiation. Even though I have done this, like your mom I am suffering terribly from extreme fatigued, very distended sore abdomen and it is painful for me to urinate or have bowel movements. I have severe cramping and backaches and often wonder why I had this procedure only to feel this bad. Yesterday I was told radiation may have to be put on hold until I get this abdomenal problem figured out so I am not so sure your mom chose the wrong route. My prayers are with you. Bless you for being such a wonderful daughter. You are priceless. Keep supporting your mom no matter what she decides. I will let you know asap if I find a remedy to my belly problem.

Donna

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

donna,
i am so sorry to hear of your discomfort. pain really. mom has some good meds now and it is really helping with the pain. don't know what the outcome is going to be, but she is fighting with all her might. still early in the fight though, so we don't know how much her body can handle. she has had all of your symptoms as well, but seems to be able to manage some of it with the medications. she won't be able to have the surgery yet. not until they shrink some of it. did you have staging done then during the hysterectomy? i think mom just finally decided that after her efforts weren't working, she got scared and wanted to live and so decided to try whatever she had to. that might all change though if she doesn't take well to any of it. no telling yet. she did have her first round of chemo and seems to be doing well. does it get harder after the first round?

my thoughts are with you and your family,
you are a brave one!
malia

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

Glad all went well, with no fights or power struggles. I am sure your Mom did appreciate everyone's visit. Glad she tolerated her first chemo pretty well. You asked about it getting harder with each chemo. I did not find the first three chemos hard at all, but then I had my radiation treatments. After the fourth chemo I did have some problems with febrile neutropenia and was hospitalized. I had an abscess in my abdomen which causes my problems.

I will keep you and your Mom in my prayers and hope she continues to do well. She needs all the support you can give her. I am sure she appreciates so much you being "mamasbaby girl". In peace and caring.

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

I am glad your trip and visit turned out well. I was thinking about you and hoping it would. I am also glad that your mom relaxed and let you and your siblings take care of her while you were there. It was also good to have positive vibes.

I really like your new photo. You are a blessing to your mom. Your visit with your mom will definitely keep your mom's spirits up during her upcoming treatments. I am glad that the meds are starting to help with her pain.

Hugs and prayers,

Kathy

soocalcher
Posts: 4
Joined: Nov 2010

Just wondering how your mom is doing. Hope all is well.

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