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serous papillary cancer, age 72-73

XTREME
Posts: 17
Joined: Feb 2018

serous papillary EC dx 10/2017 via hysteroscopy (enabled finding tumor behind a large fibroid).

Age - almost 73.

almost no symptoms, no pain light spotting about once a year for a few years.

All biopsies previously, including d&c, = "scant atypical cells, too little tissue".

Surgery - hysterectomy mid Dec. 2017. Biopsies - 8 pages, all negative except 1: "concurrent pelvic washing specimen, TC17-6424, which is positive for adenocarcinoma." [see more on tjhis below]

Tumor size - greatest dimension: 4.6cm

Peritoneal Ascitic Fluid: +Malignant [positive for malignancy]

Lymph-Vascular Invasion: Cannot br determined

Primary tumor: 1a [stage 1a]

Question: I don't want to do chemo or radiation, I want my doctors to follow me, they have agreed, but one prefers that I do chemo.

I have had debilitating chronic illness all my adult life, rare, difficult to live with, constant research, very vulnerable, always ill.

That is why I cannot see chemo being anything but harmful, or even life-threatening, and it seems this kind of cancer comes back anyway, even with chemo.

Radiation is ruled out (I'm glad) for me due to other medical dis-eases.

Confused, but my guess is that no matter what I do, my lifespan is severely limited, & I don't want to ruin quality of life by doing chemo in whatever time I may have before I may get sick from recurrent cancer. I'm ill all the time anyway, not strong enough for chemo, I feel. Not a good candidate for chemo. Also due to multiple allergies, sensitivities, restrictions, & chronic pain and vulnerability.

There has been cancer in my family (parents, aunts, uncles, paternal grandfather; ancestors) but there has been every other disease too. Two aunts - 1, paternal; 1, maternal - survived midlife cancers (bladder; breast) & lived into their 90s.

Feedback greatly appreciated.  I'm new to this. Confused about how to envision my future, how to plan, how to get emotional and alternative support, and about any pressure to do chemo. Right now, I am well, regarding cancer, at present, other than still recovering from surgery. My diet/nutrition is excellent. I need to improve exercise. I'm always debilitated by longterm chronic painful unusual untreatable illnesses. I try to lead a normal "normal" life.

Thank you.

 

 

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

Living with chronic pain saps your strength, energy and,sometimes, your will to live.  Don’t give up, your diagnosis is not a death penalty. I was diagnosed 4 years ago with UPSC that had spread to my cervix. I was very frightened but my doctor told me that we would work together to fight this scourge and today I am four years NED! 

Yes, chemo can be rough but it only lasts for a few months and gives you the ability to fight and beat cancer. It is an important weapon in the battle to make and keep you cancer free. As someone who has had to battle pain and disease all your life, you know that you have it in you to fight one more battle!

Please take the time to read through some of the threads on this board to see what others have experienced and what they’ve done to help themselves and others. You will see how many of us have been successful in beating cancer. There are many caring women here who can help you along the way!

XTREME
Posts: 17
Joined: Feb 2018

I appreciate your kind encouraging response very much. But what I fear is confirmed by all the posts I've read here tonight - this is a never-ending series of chemos and a death sentence either way.  This aggressive cancer is likely to return no matter what chemo I'd do or how many times. I cannot withstand being that sick.

I believe the chemo would kill me - from other medical problems, I am too vulnerable.

I also don't have the support resources to go through even one run of chem - or the time.

Yes, I want to live, but chemo will kill me, and if it doesn't kill me right away it will sooner or later, and the cancer will return anyway. That seems likely from the research I've done.

Right now is as well as I'm going to be until the cancer returns, if it does. I need to use this time to recover from surgery and get back to a much improved yoga and exercise practice (trouble bending forward stiil, from the surgery), and with obstacle of depression. My medical problems rule out chemo and radiation.

It was interesting to read the thread about what people wished they had known in advance.

THANK YOU.

 

XTREME
Posts: 17
Joined: Feb 2018

Doing chemo, in my case, would be giving up. That's how it seems to me so far. Especially as I read what the chemo is like, and that it has to be repeated constantly, and that this cancer comes back anyway, though, as the chemo specialist told me, it's not 100% that it will return. I interpret that to mean she wants me to think happy thoughts, and I cannot, though I can find things I love and value in every day.

EZLiving66's picture
EZLiving66
Posts: 1305
Joined: Oct 2015

HELLO Sandy!!  It's so good to see you again!  Although, I don't think most people will know who you are with your new picture.  Seeing you here and reporting you're still NED is such wonderful news!!  I myself have UPSC and am still in remission after almost 2 1/2 years.  There is hope - maybe not for a full cure yet, but for long, cancer-free remissions.

Please keep us updated.

Love,

Eldri

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

There are so many of us who are lucky enough to have had no recurrence and have been able to continue living a meaningful and enjoyable life. Your diagnosis is not a death sentence! It may look like cancer is unbeatable but it’s not! Even if you are unable to beat this cancer, you can live and enjoy life for many more years. Please look within yourself for the will to live. A positive attitude is so important in fighting cancer. 

Speak with your doctors again to try an get a consensus as to what you can expect and what treatments they recommend. There are so many treatments being discovered every year that we’re not available just a few years ago when I was diagnosed- metformin and drugs for stimulating your bodies own immune system are just two that come to mind. I have found that things always seem so much worse in the middle of the night! Try to get some sleep and think about this again when you have gotten some rest. As the old saying goes- it’s always darkest before the dawn.

XTREME
Posts: 17
Joined: Feb 2018

I cannot take Metformin.

I have done all these things.

I have not lost the will to live. That is why I resist chemo.

Everyone is different. My medical profile may be incomprehensible to you or others - it is not the norm. Nor is my life.

UPDATED 2/7/2017: Reconsidering taking metformin. Thanks to takingcontrol. Researching it, and I see it does apply to my glycemic metabolic syndrome, diabetes, other. And my internist had tried to get me to take it in the past. I was concerned about side-effects because I don't tolerate meds well, and that includes g.i. issues, where I work hard to keep a comfortable balance, a big job.

EZLiving66's picture
EZLiving66
Posts: 1305
Joined: Oct 2015

Xtreme, the biggest problem with this board is that it is skewed to show the worst.  Let me explain.  Let's say someone like you, who has just been diagnosed with cancer comes to the board.  We offer support and information.  If, after surgery, you're diagnosed with Stage I, Grade 1 uterine cancer, your doctor will do followups but usually, no further treatment is needed.  You thank everyone for their support, you go on with your cancer-free life and we never see you again.  OR....you have a higher stage and/or higher grade cancer - you stay here while going through treatment and maybe awhile after being declared NED (No Evidence of Disease), but then you drift away because you don't want to be reminded you had/have cancer.  OR....you die and hopefully we will see you in the great beyond but you sure won't be on this board anymore.

So, whose's left?  Mostly women getting an initial diagnosis who have questions, going through or about to go through with chemo/radiation, ones coming back after a recurrence or ones in hospice.  That makes it look like most everyone with this disease is doomed!  There are a few of us who are NED who come here to offer support and comfort so newbies can see that there is a light at the end of the tunnel and it's not a freight train.  Sandy is one of those rays of light, as is Abbycat.

PLEASE don't look at this board as a cross section of women who have/had uterine cancer.  There are MANY more survivors than victims. 

Love,

Eldri

oldbeauty
Posts: 180
Joined: May 2012

Hello Xtreme, so sorry to learn of your diagnosis.  We are not doctors and cannot give you a prognosis.  You seem to have settled your mind on no radiation or chemo, which is entirely your decision to make.  None of us can answer the question whether treatments beyond surgery will help you, harm you or have no effect at all.  It would seem you got a dx of an early stage, but higher grade cancer. My diagnosis of early stage, lower grade cancer in 2005 was treated with surgery and exterrnal pelvic radiation.  I was pronounced cured, but I had a recurrence in 2012 (more radiation and high dose progesterone hormone). And another in 2016 with 12 rounds of chemo in 2017.  All treatments returned me to no evidence of disease (NED) for a period.  I am quite certain it will come back again.  I am age 64 now and will face a treatment decision when I have to.  In the meantime, I am educating myself and committing myself to integrative therapies involving diet, exercise and supplemental substances (like Metformin).  Was your tissue analyzed for your cancer's progesterone and estrogen receptor status?  If so, and you are firmly positive in your progesterone receptor status, you can ask your doctor to talk to you about high dose progesterone.  It is not a conventional treatment in the USA.  I was placed on 400 mg daily of Provera (medroxyprogesterone acetate) while living overseas.  It gave me a 5 year remission before my most recent recurrence last year.  Here in the USA, they use a different formulation called Megace.  There is scientific literature that this therapy, which opposes estrogen that feeds our type of cancer, can succeed in extending remission time.  It works in a minority of cases, but may be of interest to you.  The main side effect for me was that it put my adrenal gland permanently to sleep.  That can be treated with maintenance doses of hydrocortisone (I'm on 15 mg per day).  Good luck in making the best decision for YOU.  Best wishes, Oldbeauty

XTREME
Posts: 17
Joined: Feb 2018

Hello, Oldbeauty. My cancer is not estrogen-driven or hormone-related, they think. It's serous papillary endometrial cancer. It's gone now. At least, the tumor is gone and there are no maligancies except one in peritoneal fluids (blood, lymph). Everything that can be removed by hysterectomy was removed.  I thank you for your story, and I am so sorry your cancer returned. The crossroads you feel approaching, big decision, is kind of like what I'm going through, and in process of gathering as much information as possible. Certainly I have learned things here - like your being NED (a new phrase for me) for awhile and then having recurrence.  It is a big change, as I expect everyone here knows, to get cancer - it is then, one knows no matter what, something that could always return, right? and for me the treatments are things I cannot do. I am not going into details but for medical reasons, I cannot do radiation - my doctors ruled it out, it's not just me ruling it out. I do believe that for medical reasons I cannot survive chemo as well. I think one of my two oncologists realizes that, and that my internist realizes that. 
Question: In the experience of people posting here (I know you are not doctors, I understand that these are questions for my doctors), does the chemo ever make the cancer return? does the chemo ever make the cancer worse? does the chemo ever make new cancer/s come? I'm asking those questions separately from my best guess that because of my very vulnerable medical condition, chemo would make me more susceptible to cancer. ... I also see that once one has had cancer, it might always return, no matter what one does - that is another reason why, in the context of my poor medical condition and medical vulnerabilities, I think that for quality of life reasons, it's better for me not to do chemo now (if cancer may return anyway, either way) and have some cancer-free chemo-free time before that happens if it's going to happen. That is why I decided against chemo. My doctors told me they were okay with my not getting chemo, and that they would follow me closely. Then, a month later, in consultation with one of my doctors (not the chemo specialist, the surgeon who also has chemo training, or some) that doctor told me she changed her mind and that she would feel more comfortable if I would do the chemo. I continued to say no, and have continued to communicate with her in writing, to explain my point of view, to ask questions, and especially to ask her the question "what am I not getting?". Thanks to everyone whose posts I read, and to those who responded. All of it has been helpful.

XTREME
Posts: 17
Joined: Feb 2018

Edri, Sandy, everyone, I appreciate your responses. I have learned from them and many other posts. I am not making the mistakes some of you think I'm making and I know how to read online forums with care and without picking up ideas that don't apply to me or bad attitudes.  I do know what my doctors think. They recognize that because of my other medical conditions, I am not a good candidate for radiation at all, and not for chemo also. One says I don't have cancer any more but wants me to do chemo because of the malignant cell in the peritoneal wash - there is speculation about how it got there, it may have gotten there during the wash she did during the hysteroscopy 2 months prior to surgery; an abdominal sono a week before that did not show that peritoneal malignancy; or, it's possible it was sent there by the uterine cancer that is now removed. The recommendation for chemo is "just in case". The other (chemo specialist) says it's impossible to know if I still have cancer - says I don't have any visible cancer in the places where they looked, but there may be cancer they did not see. (When I did have cancer, I wasn't sick with it - I didn't have any sickness symptoms from it). I am ill all the time with other things - it's more than most people could manage, it's always been a life-sapping huge challenge for me even throughout a high-functioning life, and with ageing it's constantly more difficult for me. They also disagree at this point as to whether the cancer I had/have is genetic and say a conversation about genetic testing "is for another time". I believe I read in this forum that it's important to get genetic testing early, if one has had my kind of cancer - serous papillary EC. That confuses me as to why they haven't done that. Maybe it's because I'm still recovering from surgery done mid December. In any case, the two doctors disagree about whether my cancer was/is genetic - but previously they seemed to agree - I believe the confusion comes in the situation of skills for doctor/patient communication. I am in touch with my doctors regularly. They are planning to follow me with imaging and blood tests. I'll see each of them regularly, and the original one (a gyn/onc/surgeon) in 2 months. She, so far, has changed her mind since a month ago (not because of any changes in my medical condition - she thinks I'm healing well from the surgery - or any tests, but through thinking about it more) now wants me to have chemo because of the malignancy in the wash. I feel I am not well enough to survive chemo (not because of cancer, but for other very real, complex, medical reasons), and it also seems to me that each round of chemo leads to another, and involves a lot of side-effects and things it's good to take to manage side-effects - all of which is overwhelming to me, given all that I already do that takes all my time and energy to manage lifelong non-cancer chronic physical medical conditions. Those chemos and the things it says in this forum it's good to take to prepare for them and during and after - those are things I'm restricted from for many medical reasons. Reading this forum for the first time, last night, I learned a lot from many of you about what the chemo exerience is like, and what the cancer and post cancer experiences can be like. I know how to read critically, thoughtfully, and I am highly educated, including in close critical reading, including for medical research online or otherwise. As to positive attitude: well, there is no doubt that it's a good thing (keeping in mind that one can be fooling oneself too - positive attitude is not an easy thing even, in my experience, for many people who feel they have it); there is also no doubt that there are many people who cannot do it (it's not just a switch one can turn on) and that admonitions about it can be oppressive (I think Barbara Ehrenreich wrote a book about that, but so have others). Perhaps it's good to remind us all regularly about positive attitude, but to consider ways of doing it. Perhaps there is need for work on how to combat obstacles to positive attitude or to helpful attitude, or to attitude itself, what is attitute? For some people positive attitude is not possible - it's not a choice; or, for some people there are huge obstacles.  Not necessarily directly related to that, but it comes to mind - something I read yesterday by a physician I know (an MD who does acupuncture), is useful, article on his blog from Jan. 2017: 

FRANK LIPMAN MD

https://www.bewell.com/blog/7-tips-to-support-a-friend-facing-cancer/

Jan. 09, 2017

7 TIPS TO SUPPORT A FRIEND FACING CANCER

by Dr. Frank Lipman

 

Thank you and best wishes to everyone.

 

XTREME
Posts: 17
Joined: Feb 2018

Hello, Oldbeauty. My cancer is not estrogen-driven or hormone-related, they think. It's serous papillary endometrial cancer. It's gone now. At least, the tumor is gone and there are no maligancies except one in peritoneal fluids (blood, lymph). Everything that can be removed by hysterectomy was removed.  I thank you for your story, and I am so sorry your cancer returned. The crossroads you feel approaching, big decision, is kind of like what I'm going through, and in process of gathering as much information as possible. Certainly I have learned things here - like your being NED (a new phrase for me) for awhile and then having recurrence.  It is a big change, as I expect everyone here knows, to get cancer - it is then, one knows no matter what, something that could always return, right? and for me the treatments are things I cannot do. I am not going into details but for medical reasons, I cannot do radiation - my doctors ruled it out, it's not just me ruling it out. I do believe that for medical reasons I cannot survive chemo as well. I think one of my two oncologists realizes that, and that my internist realizes that. 
Question: In the experience of people posting here (I know you are not doctors, I understand that these are questions for my doctors), does the chemo ever make the cancer return? does the chemo ever make the cancer worse? does the chemo ever make new cancer/s come? I'm asking those questions separately from my best guess that because of my very vulnerable medical condition, chemo would make me more susceptible to cancer. ... I also see that once one has had cancer, it might always return, no matter what one does - that is another reason why, in the context of my poor medical condition and medical vulnerabilities, I think that for quality of life reasons, it's better for me not to do chemo now (if cancer may return anyway, either way) and have some cancer-free chemo-free time before that happens if it's going to happen. That is why I decided against chemo. My doctors told me they were okay with my not getting chemo, and that they would follow me closely. Then, a month later, in consultation with one of my doctors (not the chemo specialist, the surgeon who also has chemo training, or some) that doctor told me she changed her mind and that she would feel more comfortable if I would do the chemo. I continued to say no, and have continued to communicate with her in writing, to explain my point of view, to ask questions, and especially to ask her the question "what am I not getting?". Thanks to everyone whose posts I read, and to those who responded. All of it has been helpful.

oldbeauty
Posts: 180
Joined: May 2012

Hi Xtreme.  You ask good questions that many of us raise in this journey. Getting reliable answers...not so much.  Chemo is, of course cytotoxic.  I understand that it is intended to go after only fast growing cells, like cancer.  Of course, it has to be a burden on the whole body. But fast growing cells like hair and taste buds and red/white blood cells can recover (sometimes with help) but one hopes the cancer cells are so degraded they stay down.  I believe there is chemo for some breast cancer that raises the risk of getting EC but I don't have any info about the specific questions you raised.  As for the doctor who changed her mind and now urges you to reconsider chemo, it might be something as simple as her practice group's liability insurance carrier urging the practice to favor aggressive treatment in close cases.  Someone here once gave an answer that I thought was perfect.  If on down the road you think you will regret having rejected chemo (I.e., if it recurs), then by all means work your brain through that calculus and see where you land.  There's nothing worse than gumming up your plans for best quality of life with second guessing a decision continually. You seem to have a good handle on your medical issues, whether or not they rise to the level of co-morbidities.  Perhaps the greatest challenge you face now is reckoning with this diagnosis and managing your emotional/psychological response in order to get to a place of acceptance that you've made the decision that is your overall best interest.  Unfortunately, that's mostly a conversation with yourself, although I have spent useful time with a counselor who helped me. Perhaps it might help to write down your fears of chemo and your positive expectations of chemo and have a candid talk with one or more of the most highly skilled specialists you can find.  Best wishes as you noodle thru this problem on your way to peace of mind.  Oldbeauty

XTREME
Posts: 17
Joined: Feb 2018

Thank you, this was a great post, very helpful, thank you for reading me closely.

You wrote: "your positive expectations of chemo"  My response: that there would be no side-effects and it would cure the cancer forever.

However, all that I read convinces me that the chemo leads to more chemo and destroys the body - and if a body is like mine, already with lifelong compromised immune system, not a good idea. Thank you for seeing how difficult thinking this through is, how isolating and solitary, and how difficult to make decisions and navigate along the way and with what unfolds, e.g., getting very silk, and not only dying way too soon, but a very bad death. There is no way to really control these things in advance. I still don't see myself as a candidate who can take the risk.

Reading online today, spuc has very bad prognosis, only a small percent get even 5 years, and they are the ones who did chemo (I guess - I don't know how to find a site of discussions among women who had hysterectomy, serous papillary cancer, and refused chemo, and how long or well they lived or are living.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2526
Joined: Mar 2013

XTREME, I have read through the entire thread, and it sounds very much like you are good with your decision - and that is what is important in the end.  As you said, you have other health concerns that would have complications.  

 

Northwoodsgirl
Posts: 498
Joined: Oct 2009

I have read through this thread. You will make your own informed decision for yourself based on your personal preferences, co-morbid conditions, values, past experiences, research and discussions with your loved ones and healthcare providers. There is no one “right” decision other than your own.

All of us on this board have our own unique health histories, co-morbid conditions and social-economic backgrounds. One thing we share is hope and living each day trying to stay in the present moment. I wish you peace as you move ahead with each day. 

Prairie
Posts: 5
Joined: Nov 2017

I've been battling UPSC for almost three years, and have had various rounds of different chemo treatments as well as a lot of radiation. Early on, the treatments were aimed for a "cure." Now they're aimed for management, trying to give me quality of life as well as more time. Obviously, the treatments haven't worked to the extent that we all would like.

At the end of the day, the best answer is what might give you quality of life for as long as you can. This is a discussion you and your doctors will need to have. I'm not an oncologist, so I can only give you my perspective. There are different chemo regimes, with different expectations for outcomes. A lowered level of carboplatin, in my experience, is a lot more tolerable than the carbo/taxol that seems to be standard fare as a first line of treatment. You might consider something like this. It's not just chemo vs. no chemo, in my experience. I'm tolerating carbo by itself much better than carbo/taxol (which, because of my poor tolerance of the treatment, was stretched out to six months).

I know that it takes a LOT of energy just to consider what's going on, and how to deal with it. I hope that you have oncologists who can give you good information while at the same time respecting your decisions. Wishing you the best.

 

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