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uterine serous carsinoma

Willow oaks
Posts: 12
Joined: Jan 2020
Willow oaks

Posts: 1
Joined: Jan 2020

Jan 22, 2020 - 5:17 am

 I’ve just been learned I have Serous Carsinoma. I’m scared on too many level To think about! 

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

who have it too.   I have it.   I was early stage.   Have you had a hysterectomy yet, or just the biopsy.  It is normal to feel the way you do at first.   Do you have family support?  I felt very frightened too.  It is shocking to hear that you have it.  I think the more you learn, the more you feel you can cope.   We are here for. you.  

Willow oaks
Posts: 12
Joined: Jan 2020

I found out last weekend from a uterine biopsy to see why I had slight mucus and slight bleeding. I had that occur breif some months before but the doc didnot followcwith a refural and  it cleared up with yeast infection medicin I had on hand.by my next appointment it had just returned do i reminded him I needed an apology to check the light bloody discharge. They said it’s high grade may be conta in the uterus still and set me up a speciallist appointment on feb 7... with the idea to plan a total removal. I do not know my cancer team plan yet.should so look for the better hospitals now befo starting and see if I can get in. It looks like a two week wait to get started and maybe 3 or 4 week wait for surgery. Is that too long or not? How can you tell your with the right doctor? 

Jairoldi's picture
Jairoldi
Posts: 221
Joined: May 2017

And it will be 3 years this spring since I had surgery. My doc refers to mine as advanced stage at 3B. I am doing well now with no evidence of disease (NED).

EZLiving66's picture
EZLiving66
Posts: 1436
Joined: Oct 2015

I also have UPSC and I've been NED (No Evidence of Disease) since September 30, 2015. Despite statistics this is NOT a death sentence!! Please tell us more - biopsy, surgery, treatment?

We're here for you.

Love, 

Eldri 

Willow oaks
Posts: 12
Joined: Jan 2020

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?

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

I can tell you what I did.  I was referred to the University of Washington.   I am very happy with their care.  I do drive an hour and a half to see my gyne oncologist.  I did not request a second opinion because I agreed with what was proposed to me.  I am an RN though, and might have if I didn't have confidence in what was proposed to me.  Many times iwth Endometrial cancer, there is controvery about the best treatment for different stages.  I would get the surgery done locally and then request a second opinion if you are not confident of the plan they come up with.  I like the University Hospitals because they are very up to date on treatment.  You do have to deal with learning students however.  If you don't want that don't go there.   

Of course the cancer centers are good too, but I don't live hear one.  It took me a month to get in to see the gyne onc, and then two weeks to have the surgery.   Recovery from the surgery was very easy for me.  We can gi ve you advice on what to do to get ready if you want.  Most women here had robotic surgery.  According to studies I have seen there is no increased risk with that type of surgery.  The doctor should remove some lymph nodes, some fluid from your abdomen, uterus, fallopian tubes, and ovaries.   It takes about a week to get results on what stage you are, based on biopsies of all those tissues.  YOu should have scans too, of. your whole body to rule out any spots.   

Maxster
Posts: 44
Joined: Apr 2020

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.

Maxster
Posts: 44
Joined: Apr 2020

It is wonderful to hear from people who have been successfully treated.  My doctor says it is curable but the stats are not so hot.

BluebirdOne's picture
BluebirdOne
Posts: 360
Joined: Jul 2018

I am so glad you found us. There are many threads about chemo, radiation, what to expect, and very helpful practical info like icing your hands and feet during each chemo to help stave off neuropathy. Second opinions are golden, even if they simply confirm treatment or offer something to you that another doctor has not. As you know, MSK is one of the best in the world, so you were wise to go there. I went to Mayo for my 2nd opinion and treatment. I have UPSC 1a, had the surgery, four chemos, and brachytherapy, which was appropriate for my stage. the brachytherapy was sandwiched in between the chemo as well. Hang in there, we are here for you. 

xxoo

Denise

Donswife48
Posts: 326
Joined: Nov 2015

I couldn't post for over a week when I first heard cancer.  Although I didn't know what stage or grade I had until I had a robotic hysterectomy and the pathology report can back as having 25% serous cells mixed with endo cells.  I had surgery in December 2015, and I am still without any problems.  Have you had the pathology reoprt from your surgery.  I am sure your doctor will have a good plan of treatment.  Please let us know what we can do to help.  Hugs

Molly110
Posts: 150
Joined: Oct 2019

I have/had papillary serous unterine cancer also. (Many women here use UPSC for this cancer, and it took me a while to figure out what that stood for.) I was diagnosed in late August 2019. I was terrified. I'd never had any health problems or conditions, and all of a sudden I felt as if I'd received a death sentence. I was reluctant to have chemotherapy, because I was almost as terrified by that as I was by the diagnosis. I couldn't sleep or eat. Any time I wasn't at work, I was thinking about whether I''d have time to sell my house and get my affairs in order before I died, so that my family wouldn't have to worry about it. I knew if I decided on chemotherapy, I would lose my hair and feared I was likely to die bald and sick from the chemo, ruining the few months I likely had left to me. 

I think what you are feeling is what many women feel when they get diagnosed with this cancer. I finished chemo two weeks ago tomorrow, and it was actaully nothing as difficult as I'd feared. One thing I learned right away from this discussion group is that many of the "regulars" had or have this cancer and are living years after diagniosis and treatment with what they call "NED." (It took me weeks of reading to figure out that means "no evidence of disease.") Many of the women who are NED years later have higher "stages" of UPSC, so even if you have a higher "stage" there is no need to assume the worst. I'm not sure that everyone gets "staged" at the same time after diagnosis, so you may or may not know your stage if you've just been diagnosed. For me, i was told my stage after a robotic hysterectomy. The tissue removed was examined by a pathologist and my gynecologist/oncologist told me my stage based on that tissue analysis. (I was too frightened about the cancer to have any fear to spare for the hysterectpmy, which, as it happened, was essentially painless.)

You can ask your doctor for medication to help you with your fear and anxiety. I didn't know i could until one of my oldest friends -- a lung cancer survivor -- told me that he took something and it made a big difference. So, I asked, and my doctor gave me an anti-anxity med that allowed me to sleep and eat for the forst time since I was diagnosed.  Being able to sleep and eat allowed me to think carefully about the pros and cons of chemotherapy and to make the right decision for me.  In those first terrified couple of weeks, I was in no shape to decide anything.

Another thing I learned was to let friends and family and collegues know when I needed help. I found that many people really want to help but don't know what to do, so they felt really good when I asked for something specific like a ride or help with lifting things after the hysterectomy or a shoulder to cry on.

My heart goes out to you. I never tell anyone "I know what you feel like." But in this instance, I know some of what you feel like, and I would like to tell you that it will get easier.  I am still new to this, but there are so many smart, compassionate, knowledgeable women in this group who have years of experience to share with you.

 

Molly

MAbound
Posts: 1087
Joined: Jun 2016

Oh, you said that so well! 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

Willow, I am guessing the specialist they are hooking you up with is a gynecologic oncologist, and that is good.  That is who you want to work with.  They will probably do a complete hysterectomy, they used to call it "radical" but I think they want to use kinder and gentler terminology.  In any event, it is only after they see what they are really dealing with will they be able to tell you what the plan is.  Be sure to let us know.

As Molly suggested, ask for something to help you with your anxiety.  This is a "one step at a time" process, and as terrifying as it is, there are a lot of ladies who will say it is "doable".  

Again, let that gyn onc tell you what you are dealing with and what the plan is.  

BTW, I am a 7+year survivor of Uterine Papillary Serous Carcinoma (UPSC).  As we see, it is not a death sentence. 

cmb's picture
cmb
Posts: 554
Joined: Jan 2018

A couple of years ago there was a topic that covered a lot of ground about what to expect or do when you first learn you have cancer. You may want to read through those pots at 

https://csn.cancer.org/node/314593

Sheila3
Posts: 3
Joined: Feb 2020

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.

takingcontrol58
Posts: 261
Joined: Jan 2016

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

Sheila3
Posts: 3
Joined: Feb 2020

Taking control58. Thank you very much for your reply and the information.

Love23
Posts: 7
Joined: Feb 2019

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?

cmb's picture
cmb
Posts: 554
Joined: Jan 2018

Takingcontrol58 has shared information about the supplements she takes in other posts, so if she doesn't spot your question here, you can read what she wrote about supplements at:

https://csn.cancer.org/node/321092

zsazsa1
Posts: 504
Joined: Oct 2018

Have the chemo and radiation!  UPSC is a highly aggressive tumor that tends to recur, and then be fatal.  There are people who have posted on this board that they were told that they didn't need chemo or radiation for 1a UPSC, and then they recurred.  Not good.

Have the chemo and radiation.  I was terrified of it,  and it wasn't fun, but it was do-able.

BluebirdOne's picture
BluebirdOne
Posts: 360
Joined: Jul 2018

I was dx with 1a UPSC in July 2018. Currently NED after chemo and brachytherapy. I wanted to give myself every chance to survive so the decision was easy for me after realizing how aggressive this cancer can be. Another woman on this board who was dx at the same time as me, same stage and grade followed her doctor’s recommendation and had just observation, she has passed away after recurrence, less than 2 years after dx. This is a very aggressive cancer,  please avail yourself of all of the accumulated knowledge and experience of the women on this board to make the right decision for yourself. Seek a second opinion if you are unsure. Chemo is so doable these days, brachytherapy is doable. Yes, it is all scary but knowledge is the key to understanding your options, and empowers you to make the correct decision for you. No matter what you decide we are here for you.

Denise  

MAbound
Posts: 1087
Joined: Jun 2016

UPSC is a totally different animal from endometrial adenocarcinoma. It's rare and very, very persistent even when it is caught early. Frontline treatment is one's best shot at a cure and this is the kind of uterine cancer that you want to throw the kitchen sink at. If it recurrs, it is really only managable with further treatment, but not curable. Chemo is not fun, but it is doable, especially if you are in otherwise good health. I'd fear this cancer a lot more than the chemo. Chemo is a systemic treatment and is designed to go after microscopic cells that get missed by surgery. 

I'd still consider homeopathic options to cope with getting through chemo, although save supplements until afterwards unless advised otherwise. Chemo is designed to go after cancer cells at their most active and things like anticancer or antioxidant supplements can interfere with chemo effectiveness. She may be advised to take a B complex though, because things like age, some meds, cancer, and surgery can deplete them when they are needed for nerve function. And definitely ice hands and feet to prevent neuropathy! 

The potential side effects they tell you about before chemo are just that...potential. It doesn't mean that they'll all happen, but the doctor's have to cover their butts by scaring you with a complete list of what could happen. 

I can't speak to if the homeopathic option is a safe but effective alternative to chemo. I think it's more the way to go in support of conventional treatment and for good measure when one is done and wondering "what's next?". 

QWE-Charlie's picture
QWE-Charlie
Posts: 4
Joined: Feb 2020

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!

.

zsazsa1
Posts: 504
Joined: Oct 2018

Willow, I don't think that I responded to you because I was taking my little mini-break from the site.  I was diagnosed in Sept 2018 with UPSC after a YEAR long delay - I had gone to GYN complaining of clear discharge, had the transvaginal ultrasound scheduled already for that day, and she told me I didn't need it, that until there was blood, nothing to worry about.  Took a year to develop blood.

Anyway, the things that I would urge you towards - have a discussion with the surgeon before the hysterectomy about balancing needs for complete staging against risk of developing lymphedema in the legs from taking out too many nodes.  Make sure that the tissue is tested for her2/neu status, because if it is positive, you would possibly benefit from herceptin being added to the chemo.  Asssuming that you are going to have chemo containing Taxol, severely chill your hands and feet from about 15 minutes before they start the Taxol until you leave the infusion center.  I immersed my hands and feet in ice water, and I have only a little numbness in my left foot, and no stabbing pains.  Now, many centers offer cold booties and cold mittens - I don't know if they would be as good.  I used a heating pad on my midsection to keep myself from being cold during the infusions, and my husband would take off melted water and add more ice during the infusions, especially when I fell asleep from the Benadryl.

If radiation is recommended, have a discussion with the radiation oncologist about what type of radiation treatment would be best for you.

I was either 1a or 3c1, depending upon how one interpreted the isolated tumor cells found in one of two sentinel nodes taken.  I had carboplatin, taxol, and whole pelvic radiation targeted at the lymph nodes.  Surgery 10/2/18.  Chemo done about end of Feb 2019.  Radiation done end of May 2019 I think.  No sign recurrence yet.  By the end of the summer, I felt much more like my normal self.  If your treatment goes more smoothly than mine did, you might be all done with treatment by early summer, and be able to move on with your life, healthy.  And the women here will be with you every step of the way, to answer questions as able, and to offer support.

Sheila3
Posts: 3
Joined: Feb 2020

Thank you everyone for your replies. There is so much information and a lot of it is conflicting. Even here in the answers we have some that have used integrative and some not. I've read that they administer Amifostine which is a strong anti-oxidant yet at least some recommend not to take anti-oxidants while on chemo. In what I've read here there are some that have been NED for years and others that have had re-occurences over many years. It sure is a lot to take in and to deal with. Thank you everyone for your help!

zsazsa1
Posts: 504
Joined: Oct 2018

And unfortunately there are early recurrences, too.  Both NED and recurrences over many years can be outliers.  You see, the ones who recur early aren't here any more, and there are many who recur early.  UPSC is a deadly serious disease.  You must treat it as such.  

I will never forget a woman who came on here right after I was diagnosed.  She had been diagnosed with UPSC, stage 1a I think, based upon her hysterectomy.  But she was afraid of chemo and radiation, wanted to do "natural" alternative treatments.  She went to some spa in Mexico where they did nice things like massages and health foods.  Came back with metastatic disease, which unfortunately, is usually rapidly fatal.  There's another woman whose mother had a hysterectomy, serous 1a.  They were advised no chemo, no radiation because it was so early stage.  She quickly relapsed with metastatic disease.  We don't hear from her anymore.

Early stage UPSC treated with chemo and radiation has a significant chance of a cure.  Please, don't waste that chance because you're afraid of the side effects of chemo and radiation.  They are definitely do-able.  Most people recover fully from chemo and radiation.   They're your best chance at a cure.  You want to do alternative treatments, too?  Sure, as long as they don't interfere with the mechanism of action of the chemo and radiation.    If you're thinking of declining chemo and radiation, please get a second and third opinion from major gyn onc centers.  You will not find a single one of them that will not recommend chemo and radiation.

MAbound
Posts: 1087
Joined: Jun 2016

It may help you to understand the differences between UPSC and endometrail adenocarcinoma.

While a grade 3 endometrial adenocarcinoma is put in the same category as serous cancer, that is only in regards to its higher risk for recurrence compared to lower grades. Grade 3 adenocarcinomas are generally treated as aggressively as lower stages of serous cancer during frontline treatment to reduce our odds of recurrence. We work after treatment to correct what we can as far as the issues that contributed to getting us into trouble in the first place.

Adenocarcinoma and UPSC do not arise from the same conditions or have the same histological characteristics, so what makes an impact for endometrial adenocarcinoma may not necessarily do the same for UPSC. They are just two very different cancers even though they occur in the same organ.

UPSC is not hormonally sensitive like endometrial cancer is.  If you look at the risk factors for endometrial adenocarcinoma you'll see that a lot of them relate to hormone issues like over- or prolonged exposure to estrogen, insulin, and insulin growth factor that result in over-proliferation of the endometrium. Your wife may not have any of them because this is not the cancer she has. It is sometimes caught early as endometrial hyperplasia (overgrowth of the endometrial lining) before it mutates into cancer. UPSC, on-the-other-hand, arises in the setting of endometrial atrophy. It's adenocarcinoma's opposite as regards hormones.

I get that chemo is harsher than homeopathic options and it would be nice to go solely in that direction, but choose that path with extreme caution. UPSC is a dramatically more stubborn beast about recurring and this is the time to go after it with both barrels blazing even though it's been caught early. The homeopathic measures can be used for support during treatment and addressing issues such as sustained inflammation that can contribute to cell mutation after that's completed. Discuss genetic/genomic testing with your doctor, too. UPSC is a rare, highly aggressive form of uterine cancer with a poor prognosis, but we have women here surviving with it. The thing is, you have to be just as aggressive as it is beating it back. 

oldbeauty
Posts: 277
Joined: May 2012

I do not have USPC; I have endometrioid adenocarcinoma Stage IC, Grade 2.  I have recurred 2x and am considered not curable, yet treatable.  So I urge your wife not to discount the risk of recurrence even if she had early stage.  Those with USPC all say not to fool around with it.  I myself follow Takingcontrol58 closely, and I credit her with turning me on to Metformin and integrative practitioners who will craft a regimen to help your body stay in remission.  Please note, however, that she did go through conventional chemotherapy (as did I).  I have been surviving with this disease for 15 years and I would not let my guard down and think I'm home free.  I would not decline conventional treatment when my disease does recur, as doctors tell me it will.  Best wishes to you and your wife in this journey.  You have found a wealth of information and welcoming people here.  Oldbeauty

MAbound
Posts: 1087
Joined: Jun 2016

Oops!

QWE-Charlie's picture
QWE-Charlie
Posts: 4
Joined: Feb 2020

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.❤️

BluebirdOne's picture
BluebirdOne
Posts: 360
Joined: Jul 2018

I have 1a USPC, with LVSI. I was 67 at dx, in July 2018. Currently NED. I also have a lung nodule. This is my report:

IMPRESSION: A solitary 8 mm nodule in the right lung is indeterminate for metastatic disease. Follow-up chest CT exams suggested.

EXAM: CT CHEST WITH IV CONTRAST

COMPARISON: None.

FINDINGS:

There is a well-defined 8 mm nodule in the right upper lobe medially (series 2, image 60). This nodule is indeterminate for metastatic disease. However, it measures lower in density than would be expected for a nodule this size, raising the possibility that it could be a hamartoma with fat. Follow-up exams suggested. The lungs are otherwise clear.

No lymphadenopathy. No pleural effusions.

Follow up CT showed no growth, also confirmed it was probably a hamartoma! but we will continue to monitor it. 

It pays to be proactive and we know our bodies better than anyone. 

 

Good luck to you and and let us know how you are doing. 

Denise

 

QWE-Charlie's picture
QWE-Charlie
Posts: 4
Joined: Feb 2020

Thank you Bluebirdone.  I am glad for you that this is likely hamartoma. No growth is encouraging.  The waiting, I guess is more mentally intrusive than the disease process.  I think if there is no change in size and appearance on my scan in April I will have a better "gut feeling".  I wish you well and pray for continued healing.  Again thank you so much for responding.  I am so glad I found this discussion page.  It confirms we are not alone.  ❤️ 

zsazsa1
Posts: 504
Joined: Oct 2018

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.

QWE-Charlie's picture
QWE-Charlie
Posts: 4
Joined: Feb 2020

Me too.. Thank you for responding . 

zsazsa1
Posts: 504
Joined: Oct 2018

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

Sara711
Posts: 2
Joined: May 2020

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. Cry

BluebirdOne's picture
BluebirdOne
Posts: 360
Joined: Jul 2018

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 

Maxster
Posts: 44
Joined: Apr 2020

I can only reiterate what has been said.  This is a very aggressive cancer and the stage is not determinant of treatment.  What is being proposed to you is what has been shown to work.  Your age has some things going for you in terms of strength and resilency.  While I am much older and retired, I went through chemo and radiation and managed fairly well.  Yes there are side effects but these are temporary.  As for working, it is very doable from what I heard from women in my support group.  As for hair loss, there is cold cap treatment which can be very successful in preventing hair loss.  Staying pretty under these conditions would probably be a boon to sales! I wish you the best.  It is so hard to make decisions with all the emotions running through you.  Take the time you need and always get a second opinion of not only treatment but the staging of your disease.  Good luck!

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1688
Joined: Jun 2015

Welcome Sara. I'm so sorry you need to be here but glad you found us! 

You are on the young side for the average that get UPSC, but not unheard of. We have several ladies your age on the board. I'm hoping they will come along and offer you some advice and support. I was 57 when diagnosed almost 5 years ago. I did chemo and brachy therapy. Chemo was not easy, but was doable. I did not work since I had just retired when all this started. There are a lot of women that did work while doing chemo. So, please post any questions you have. Someone will be along to help you through your journey.

Love and Hugs,

Cindi

Sara711
Posts: 2
Joined: May 2020

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)Undecided 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. Kiss

BluebirdOne's picture
BluebirdOne
Posts: 360
Joined: Jul 2018

It was not normal for me. I had gone through menopause 15 years earlier, but the shock of the dx made me an emotional wreck for about an entire year. It did get better for me so hopefully it will for you. 

 

Denise

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

So sorry to hear that you are dealing with this.  It is a shocking diagnosis, and we have all felt what you are feeling.  Its good that you are 1A.  I have read that younger women have a lower recurrence rate, and normal weight women, so you have that.   Serous carcinoma of the endometrium 1A has several different possibilities.  Did they tell you if you have Lymphovascular space invasion and how much of the uterine muscle was inflitrated.  These affect the treatment recommendations.  I think it is good that you get a second opinion.  The emotional part of this is hard too.  It is good to come here and share your feelings.  Sometimes friends and family don't quite understand, but if they do great.  But feel free to come here for support.  

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