uterine serous carsinoma

Willow oaks

Willow oaks Posts: 1 Joined: Jan 2020

Jan 22, 2020 - 5:17 am Uterine Serous Carcinoma I’ve just been learned I have Serous Carsinoma. I’m scared on too many level To think about!

Forherself

There are lots of women here

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.  

Jairoldi

I also have Serous

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

I also have UPSC and I've

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 

Unknown

Hi Willow oaks

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

It Gets Easier

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

Molly110 said:

It Gets Easier

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

Eloquent

Oh, you said that so well! 

Willow oaks

Forherself said:

There are lots of women here

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.  

I found out last weekend from

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? 

Willow oaks

EZLiving66 said:

I also have UPSC and I've

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 

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?

NoTimeForCancer

Willow, I am guessing the

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. 

Forherself

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?

Good questions

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.   

cmb

See topic "What do you wish someone had told you?"

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

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

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.

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

zsazsa1

Willow, I don't think that I

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.

zsazsa1

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.

Have the chemo and radiation!

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.

MAbound

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.

UPSC is a different animal

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?". 

Sheila3

Serous Carcinoma

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!

Sheila3

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

Integrative Medicine

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

MAbound

Sorry for the conflict

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

Just saying...

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