uterine serous carsinoma

I was diagnosed with UPSC in April 2019. Had radical hysterectomy in May. I had 6 rounds carbo/taxol.  Scans every 90 days. I love my Dr she is surgical Gyno-oncologist. She stated my treatment plan exactly as MD Anderson and Mayo Clinic. I am 64 have 4 grown sons and 9 grands!!!! Married for 44 years.   I say this to demonstrate how much I have to live for.  My first few months after Dx we're horrible filled with fear .... not of dying.... but missing out on all the joys God has blessed me with.  Chemo's insult on my body was fatigue and joint pain.  My Dr personally called me many times at many steps of the way.  Claritin for joint pain worked well.  Fatigue was my nemisis.  I do know this.... I have no regrets ref. Chemo. Hair loss was devestating to me, (I'm ashamed to say...and I am still dealing with this).  Some of this journey is day by day. I will have chemo again if needed even with all the issues it brings.  My last scan shows 2-2mm nodules in my left lung an multiple small lesions in the fissures of my right lung.  My Dr. has me in a wait and watch pattern.  Lesions / nodules too small to biopsy.  They were not there at the time of my first two scans.  So "in my head" though not stated as such by my Dr. I believe these small lesions are the early manifestaction on a metastatic disease. All the research I've done from many reputable sources including ACR say unless the lesions/nodules are 6mm or greater treatment is deferred.  I would like to know if any of you have encountered this and what your outcome/resolution was. As stated above, regardless as to my Dx. I will  be as aggressive in my fight against this disease as my Dr. recommends.  
I feel blessed to have come across this discussion page. I see MANY of us are living with this disease.  Not just waiting to die. Honestly statistics almost had me in the latter.❤️

Sheila3 said:

Hi, My wife was recently diagnosed with UPSC she's had a total hysterectomy and the stage came back from the pathology report as stage 1A grade 3. The size of the tumor was .4cm and the biopsies on the lymph nodes were negative. They still want her to go through the full course of chemo and she is very concerned about going through the chemo because of the side effects and that if she is cancer free after the surgery she would be putting her body through a lot unneccesarily. Has anyone here at this staging not followed the standard protocol and if so how are you doing? Also has anyone here taken a homeopathic,change of diet/ supplements etc. approach without doing the standard protocol and is still NED, and is there anyone here who has followed the standard protocol but also used homeopathic/diet/supplements along with it and did it help and you're still NED? I've heard conflicting reports on whether taking supplements/antioxidants etc. should be or should not be taken during chemo and or radiation therapy. Thank you.

Sheila3, my diagnosis after staging; UPSC 1B grade 3.  After surgery there was no visable evidence of disease.  I was strongly encouraged to have Chemo- 6 rounds Carbo/Taxol which I did. With no regrets. So there is no visible evidence of disease This type of cancer is known for microscopic metastases therefore from everything that I have been able to gleam from many hours of research is that this cancer type is aggressive and should be treated aggressively; even stage 1. I am not a doctor and decisions such as this must be made with much prayer, knowledge and trust.  I've just recently found this discussion page and I am encouraged at the number of women that are living with good quality of life even with this disease. Yes, I see that there are many with re-occurrences and additional treatments. I know this is a different journey with ongoing care and attention to self and health, none-the-less a journey worth living... different...some days difficult....and some just emotionally and physically horrible...but I think most will agree that in the midst of this there are new days and there will be many new days and silver linings.  I pray for you and your wife and all thode on this page for health, healing, and new bright and joyful new days!

.

Welcome, Charlie.  You know, we all develop lung nodules as we age, that are nothing.  I'm hoping that's what it is, for you.

zsazsa1 said:

Welcome, Charlie.  You know,

Welcome, Charlie.  You know, we all develop lung nodules as we age, that are nothing.  I'm hoping that's what it is, for you.

Me too.. Thank you for responding . 

Willow oaks said:

Thank you for that hope! I’m

Thank you for that hope! I’m just gett started heard only a week ago. Had only slight discharge over less than six months and not ongoing even now. It is high grade or high risk. Should I try to be selective with treatment center...? I’m near Memphis closest large city. Or wait till I hear more from the surgery assuming that is next?

I too have serous cancer Stage IIIC.  After diagnosis,  I scheduled the surgery.  It was robotic and complete hysterectomy, bilateral salpingo-oophorectomy, and lymphadenectomy.  I read what I could on the surgeon's credentials.  He is a gynecological oncological surgeon with a background in academic medicine.  After the surgery he made a recommendation for sandwich therapy (light chemo for three infusions, 25 pelvic radiations followed by three regular strength chemo.  I was able to get a second opinion at Memorial Sloan Kettering (MSK) in New York.  If that had not been possible I would have gone to Univ of Wisconsin-Madison for one.  MSK had a different recommendation: 6 rounds of chemo, one every three weeks, with 3 brachytherapy radiations between one of my rounds.  This is what the latest research is recommending.  Serous cancer is very aggressive and tends to recur in places other than the pelvis (like the abdomen).  Chemotherapy will attack cancer cells living outside the pelvis.  Brachytherapy prevents recurrence in the vagina especially the vaginal cuff where recurrence is most common.  They advised I receive the chemo at home (taxol and carboplatin) and the radiation at the University with someone who is very well experienced in this.  The university radiation oncologist totally agreed with MSK.   Unfortunately, in a scan taken prior to radiation, she had concern about a lymph node and recommended full pelvic radiation for 25 treatments after completing chemo.  I went back to MSK and they said it was fine to do this and that it was a rather aggressive approach.  I only have five more treatments. I share all of this because a second opinion is invaluable.  I am confident I made the correct treatment choice.

lung nodules in older people are really very common.  Probably nothing to worry about.

takingcontrol58 said:

Over 5 years NED using integrative medicine

Shelia3,

I was diagnosed with Stage 3b, Grade 3 endometrioid adenocarcinoma (Grade 3 of this type of cancer is put in the same category as
serous). I had one mutation that is well known to make basic endometrioid cancer very aggressive. Two months after my successfuly
hysterectomy, I metastasized to multiple locationsand was Stage IV. I was given 4-6 months. That was Jan 2015.

Below is the link to My CSN Space.  I detail my entire journey from my diagnosis in Oct 2014 to the present.
https://csn.cancer.org/user/253111

I personally believe that the only way to heal advanced, metastatic or an aggressive (serous is one of the most aggressive) or fast growing
cancer is with the use of integrative medicine, which is some standard cancer treatment along with various complementary treatments (like
non cancer drugs, supplementation, organic diet, exercise, etc).

Despite what the doctors say, you can use certain supplements with chemotherapy and radiation, and some are actually known to make these
treatments work better. I never experienced any serious side effects during chemo and never had to stop treatment (only had 6 infusions of
Taxol/Carbo), also never needed any shots of Neulasta. I was initially put on a regimen of 34 supplements along with metformin, low dose
aspirin and doxycycline.  I have continued to follow the same plan for over five years now. My integrative oncologist had a Phd in molecular
biology so he knew what supplements could be used with my chemotherapy.

I had a miraculous remission using integrative medicine. Not only did all my metastases disappear in seven months, I have remained totally
cancer free for over 4 1/2 years now, from a cancer considered incurable. I don't believe cancer can be cured, but it can be healed.

I will be happy answer any questions you may have. 

Takingcontrol58

SO my mom was diagnosed with stage 4, she recently had a recurrence, but we are awaiting a pet scan. What kind of supplements did you use please?

Hello everyone, I was curious what age everyone is on here? My DR told me this cancer is rare but also even more rare in someone my age. I'm 43.

I just had a totaly hysterectomy 3 weeks ago including my ovareis and some lymph nodes. I'm so sad and freaking out abt losing my ovaries and terrified about going into menopause. So that's one issue that I was hoping to hear from the younger women from. (maybe there is another thread on this?)

But the bigger issue is now they want me to do chemo and radiation. Which I DON'T want to do. I'm terrified and going thru this alone. I'm not married and I have to work and just don't know how I'll do these treatments and work thru it. I work in retail sales/cosmetic dermatology so it's the beauty business and very fast pased job. I'm other wise very healthy and very fit active person. So the thought of being so sick and no energy from chemo, losing weight and my hair is unbearable to imagine. I already have made up my mind not to do the Radiation becasue I'm so young and don't want to do any more damage to my vaginal tissues as I'll already be dealing with menopause.

The Chemo I'm considering. I also went to a funtional medicine cancer clinic that does all the natural treatments too so I'm exploring all my options. 

UGH This is all just so shocking and I'm freaking out. Glad I found this site and can hopefully I'll get some good info from all of you who understand what I'm going thru. 

Sara711 said:

Hi I'm New and have Stage 1A PSC

Hello everyone, I was curious what age everyone is on here? My DR told me this cancer is rare but also even more rare in someone my age. I'm 43.

I just had a totaly hysterectomy 3 weeks ago including my ovareis and some lymph nodes. I'm so sad and freaking out abt losing my ovaries and terrified about going into menopause. So that's one issue that I was hoping to hear from the younger women from. (maybe there is another thread on this?)

But the bigger issue is now they want me to do chemo and radiation. Which I DON'T want to do. I'm terrified and going thru this alone. I'm not married and I have to work and just don't know how I'll do these treatments and work thru it. I work in retail sales/cosmetic dermatology so it's the beauty business and very fast pased job. I'm other wise very healthy and very fit active person. So the thought of being so sick and no energy from chemo, losing weight and my hair is unbearable to imagine. I already have made up my mind not to do the Radiation becasue I'm so young and don't want to do any more damage to my vaginal tissues as I'll already be dealing with menopause.

The Chemo I'm considering. I also went to a funtional medicine cancer clinic that does all the natural treatments too so I'm exploring all my options. 

UGH This is all just so shocking and I'm freaking out. Glad I found this site and can hopefully I'll get some good info from all of you who understand what I'm going thru. 

I hope you will avail yourself of our collected experiences and wisdom to make the decision which is right for you. We are here to support you no matter your decision.  And please read everything that Zsa Zsa has to say. This cancer is nothing to fool around with, you must define your goals. The chemo and radiation are doable, and are life saving. 

Denise 

Thank you for all the replies..... I am working on getting a 2nd opinion at UCLA. And I might go get a 3rd opinion too depending on what they say.

Also, I'm going to this place called Cancer Center For Healing which is in Irvine CA. It is an integratvie functional medicine practice.. They aren't apposed to Chemo so I feel confident that they aren't trying to talk me out of it and/or that they can heal me naturally. They actually do chemo there too. But in addition, they work on building your immune system and a strong focus on a healhty lifestyle with diet and vitamins etc. I thought I'd need to become Vegan but they said only if my cancer was driven by estrogen. I'm being tested for this by my Oncologist so will find out this week. Some cancers (like colon cancer for example) people should be vegan but this type of cancer it is probably is ok to eat organic hormone free meat. I'm anemic right now so they want me to eat red meat and take these beef liver supplements. I think because I spent the last 6 months losing alarming amounts of blood. (That's how we discovered my cancer). So I hope I can build my blood back up now since I know chemo can lower blood counts and plateletts. 

I stopped all sugar which is hard becasue I have a sweet tooth. No processed foods either. I guess for me at this point I feel like the one thing I can control is my diet and making sure I'm taking care of my body in the best possible way. Eating healthy also helps keep my mind clear and helps me focus on these bigger decions I need to make. 

I'm batteling hot flashes which sucks so bad (even though they gave me an estrogen patch) and I think the sudden severe drop in my hormones is effecting my mood. I wonder if I'm crying all the time because I'm terrified and upset of this cancer diagnosis and it's normal OR if my hormones are a mess. Probably a combo of both. 

I see my Oncologist on Thursday and will discuss all of this. 

Thank you again Ladies and Happy Mothers day to all of you who are moms.