Serous endometrial cancer (UPSC) - please give me hope
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Hair lossMolly110 said:Army Wife
Army Wife, I was writing my response when you posted yours, so I didn't see it until after I posted mine. I'm so glad you mentioned soft caps; they really helped me at night. A friend knitted me mine, and they were much softer than the ones available commercially -- at least the ones I tried.
It's funny how different we all are. I hated the feeling of water on my hairless head. I was used to gathering all my hair up on the top of my head to shampoo it, and to have nothing there made me sad every time. Fortunately, I mostly took baths, so I didn't have to deal with it much except when I washed my scalp. Seven months after my last chemo, and I still hate washing my hair and feeling how short it is.
I'm sort of a one-woman campaign when it comes to talking about hair loss. Most of the really good sites for chemo patients, like the Mayo Clinic, talk about the stress or trauma of losing one's hair, but the prevailing attitude among many otherwise sympathetic people seems to be "it's only hair." It's gotten to where anytime someone tells me that, or tells me to "rock" the look, I fantasize about someone shaving that person's head so that they can rock the look and see how they like it. Until then, I never knew I had a mean streak. I wish there were a site or forum devoted to chemo hair loss. There are lots of individual blogs by women who've experienced it -- usually after breast cancer chemo -- but a lot of the information on those sites is not accurate. One of the things I like about this discussion board is the high quality of the information women who post here share.
Molly, I am there with you on saddness at losing my hair. I am going to hate it. Thanks for the encouragement..
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Thanks
Thank you all for helping prepare for this new adventure I will be on.
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Hair loss for me was bad because of how peopleConnie0127 said:Hair loss
Molly, I am there with you on saddness at losing my hair. I am going to hate it. Thanks for the encouragement..
looked at me. Sounds pretty superficial, but it was the worst feeling - the first glance, then the stare, then the eye aversion as the person looking at me realized that I probably was a cancer patient. Other than the uncomfortableness of having no hair, hot, sensitive head at first, then just cue ball bald, it was of less importance how I looked, only about how people now viewed me, which was excrutiating for a private person like myself. I hated the questions. I was extremely cold, mostly due to the chemo, and I wore a beanie at all times at home to keep warm, in the heat of the summer, I was cold until the next summer, as I recovered. I lost my hair after the 2nd chemo, and it started growing back about two months after the last chemo, but took 6 months to really get hair back enough to make a style. Sure, you have the 1/4 inch look, then the 1950's crew cut look, then patchy growth, until it came back in. It was slightly curly at first, very cute, but then reverted back to the stick straight fine hair that I had before, except it was white and gray! I no longer color my hair. I wore different hats when I went out because I could not tolerate a wig, and wasn't crazy about the typical chemo babushska. My point is everyone is different, feels different and reacts differently to the loss of hair. Now two years in, the hair issues still stings as I did not want outsiders to know about my cancer, but also it was something out of my control. Two years later i don't care so much anymore about who knows I have cancer, but in the early days I was just too raw, too emotional, too fragile to be able to absorb a cancer dx, losing hair, AND having to deal with going out in public. (I am retired so I did not have to go to work) Now, I just want to remain NED, and get past the next year and those hair issues seems so far in the past. Just remember that your feelings about hair loss are extremely valid, reasonable, and are something that most of us have to deal with. There is no right way or wrong way to deal with the issue, like all of the emotional roller coasters we are on after dx, we all handle them differently. Good luck to you!
xxoo
Denise
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Yes!!BluebirdOne said:Hair loss for me was bad because of how people
looked at me. Sounds pretty superficial, but it was the worst feeling - the first glance, then the stare, then the eye aversion as the person looking at me realized that I probably was a cancer patient. Other than the uncomfortableness of having no hair, hot, sensitive head at first, then just cue ball bald, it was of less importance how I looked, only about how people now viewed me, which was excrutiating for a private person like myself. I hated the questions. I was extremely cold, mostly due to the chemo, and I wore a beanie at all times at home to keep warm, in the heat of the summer, I was cold until the next summer, as I recovered. I lost my hair after the 2nd chemo, and it started growing back about two months after the last chemo, but took 6 months to really get hair back enough to make a style. Sure, you have the 1/4 inch look, then the 1950's crew cut look, then patchy growth, until it came back in. It was slightly curly at first, very cute, but then reverted back to the stick straight fine hair that I had before, except it was white and gray! I no longer color my hair. I wore different hats when I went out because I could not tolerate a wig, and wasn't crazy about the typical chemo babushska. My point is everyone is different, feels different and reacts differently to the loss of hair. Now two years in, the hair issues still stings as I did not want outsiders to know about my cancer, but also it was something out of my control. Two years later i don't care so much anymore about who knows I have cancer, but in the early days I was just too raw, too emotional, too fragile to be able to absorb a cancer dx, losing hair, AND having to deal with going out in public. (I am retired so I did not have to go to work) Now, I just want to remain NED, and get past the next year and those hair issues seems so far in the past. Just remember that your feelings about hair loss are extremely valid, reasonable, and are something that most of us have to deal with. There is no right way or wrong way to deal with the issue, like all of the emotional roller coasters we are on after dx, we all handle them differently. Good luck to you!
xxoo
Denise
Denise, yes!! I miss my hair, which I wore it long and thick my whole adult life, but what I hate, and what made it so hard for me, was the complete lack of privacy that losing one's hair entails. Seven months later -- almost eight now -- and I still get the exact look you describe. I sometimes go out in the neighborhood without the wig now that I have a couple inches of hair. and other women, especially, wonder if my hair is a choice or cancer -- the glance that becomes almost a stare, and the quick, embarrassed looking away when they realize that I noticed. It's never intended as mean; it's just a normal curiousity and speculation.
The diagnosis was a shock, and I spent months terrfied of dying. The last thing I wanted was for strangers to know. I felt exactly as you described -- raw, emotional, and fragile. The encouragement of strangers was as unwelcome as pity. I wanted it to be up to me who I told and when. Hair loss took that choice away from me, so I wore a wig almost all the time. I still do, except at home, with very close friends, and on the occasional errand in the neighborhood. I'm more emotionally sturdy now than I was then, and, like you, what I care about most is that it never comeback, but until my hair reaches a length that draws no attention from strangers, I'm going todo everything I can to help it grow.
I felt so comforted when I read your post. I've never felt before that anyone understands why I hate the hair loss. Thank you for that.
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You're very welcome. We areConnie0127 said:Hair loss
Molly, I am there with you on saddness at losing my hair. I am going to hate it. Thanks for the encouragement..
You're very welcome. We are all pulling for you. As Denise says, everyone responds differently, and I so hope that you will find it easier than you fear. Oddly enough, I found it much easier, but that may be because I dreaded it so much that nothing could be as as bad as I expected being without hair to be.
One thing that surpised me is that I was completely comfortable seeing myself bald. I had planned to wear a cap at home because I thought I'd hate the sight of my bald head in the mirror. As it happened, that didn't bother me a bit. The chemo itself was much easier than I expected and the five months of chemo and radiation passed surprisingly quickly. I hope your treatment goes as smoothly. One thing that helped me so much was asking women on this board about their experiences with various things I was coping with -- there is so much good, reliable information to be found here.
Warmest best wishes.
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It was all so much to handleMolly110 said:Yes!!
Denise, yes!! I miss my hair, which I wore it long and thick my whole adult life, but what I hate, and what made it so hard for me, was the complete lack of privacy that losing one's hair entails. Seven months later -- almost eight now -- and I still get the exact look you describe. I sometimes go out in the neighborhood without the wig now that I have a couple inches of hair. and other women, especially, wonder if my hair is a choice or cancer -- the glance that becomes almost a stare, and the quick, embarrassed looking away when they realize that I noticed. It's never intended as mean; it's just a normal curiousity and speculation.
The diagnosis was a shock, and I spent months terrfied of dying. The last thing I wanted was for strangers to know. I felt exactly as you described -- raw, emotional, and fragile. The encouragement of strangers was as unwelcome as pity. I wanted it to be up to me who I told and when. Hair loss took that choice away from me, so I wore a wig almost all the time. I still do, except at home, with very close friends, and on the occasional errand in the neighborhood. I'm more emotionally sturdy now than I was then, and, like you, what I care about most is that it never comeback, but until my hair reaches a length that draws no attention from strangers, I'm going todo everything I can to help it grow.
I felt so comforted when I read your post. I've never felt before that anyone understands why I hate the hair loss. Thank you for that.
in the first months and probably almost two years. I know people mean well, but I was told emphatically from one friend that I was only allowed to ”think positively“ so I was not allowed to express my grief, my sadness, my anger at having cancer. It was so debilitating until I said “f that”. The think positive police almost always have never had to face cancer personally and it was so frustrating to hear those empty words. For me the only way I could get to a positive place was to face the truth of my USPC dx, that stage 1a die, that recurrence was possible, that I needed an emotional plan to deal with this and still have hope for a future. I stopped caring about what they thought how I should feel and react. The hair loss has a public and private component. The public was too hard for me and exacerbated my fears, grief and depression. I burst out crying, sobbing uncontrollably on several occasions when I thought I was I was able to handle the “look” but I wasn’t. That was when I knew I needed to protect myself from those friends, strangers. The good thing is that I was able at my lowest emotionally to actually do it. Privately I was glad to have the support of my husband who allowed me to express all of my emotions, to grieve, to cry, in order to be able to move forward. As many have discovered, the hair is not the issue, it is how people perceive the new and possibly dying, you. The good news for all you newbies, is that it does get better, your ability to cope is in direct proportion to your time spent with this disease, and your knowledge base. The hair issue is fraught with all kinds of dilemmas on how to cope, and there is no shame in admitting you are NOT coping.
xxoo
Denise
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I am so glad to see these commentsBluebirdOne said:It was all so much to handle
in the first months and probably almost two years. I know people mean well, but I was told emphatically from one friend that I was only allowed to ”think positively“ so I was not allowed to express my grief, my sadness, my anger at having cancer. It was so debilitating until I said “f that”. The think positive police almost always have never had to face cancer personally and it was so frustrating to hear those empty words. For me the only way I could get to a positive place was to face the truth of my USPC dx, that stage 1a die, that recurrence was possible, that I needed an emotional plan to deal with this and still have hope for a future. I stopped caring about what they thought how I should feel and react. The hair loss has a public and private component. The public was too hard for me and exacerbated my fears, grief and depression. I burst out crying, sobbing uncontrollably on several occasions when I thought I was I was able to handle the “look” but I wasn’t. That was when I knew I needed to protect myself from those friends, strangers. The good thing is that I was able at my lowest emotionally to actually do it. Privately I was glad to have the support of my husband who allowed me to express all of my emotions, to grieve, to cry, in order to be able to move forward. As many have discovered, the hair is not the issue, it is how people perceive the new and possibly dying, you. The good news for all you newbies, is that it does get better, your ability to cope is in direct proportion to your time spent with this disease, and your knowledge base. The hair issue is fraught with all kinds of dilemmas on how to cope, and there is no shame in admitting you are NOT coping.
xxoo
Denise
I, too, am a very private person so it wasn't the hair lose per se but everyone knowing my business that bothered me. Up to that point it was only my immediate family and a couple friends who were aware of my diagnosis. It did get easier.
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Connie,ConnieSW said:I am so glad to see these comments
I, too, am a very private person so it wasn't the hair lose per se but everyone knowing my business that bothered me. Up to that point it was only my immediate family and a couple friends who were aware of my diagnosis. It did get easier.
As I discovered and was sadly oblivious to until I got cancer was that there are two separate things we have to deal with after dx, the physical toll and the emotional toll. I can only speak about a two year time for me, and I have been NED since treatment ended, I am 1a, serous. They prepare you for the physical toll, but not so much for the emotional toll, which I think for me was way worse. Counseling can help, but you as a person still have to navigate your new reality, interacting with people outside of your circle. The good news is that for many of us we learn to cope day by day.
xxoo
Denise
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I understandBluebirdOne said:It was all so much to handle
in the first months and probably almost two years. I know people mean well, but I was told emphatically from one friend that I was only allowed to ”think positively“ so I was not allowed to express my grief, my sadness, my anger at having cancer. It was so debilitating until I said “f that”. The think positive police almost always have never had to face cancer personally and it was so frustrating to hear those empty words. For me the only way I could get to a positive place was to face the truth of my USPC dx, that stage 1a die, that recurrence was possible, that I needed an emotional plan to deal with this and still have hope for a future. I stopped caring about what they thought how I should feel and react. The hair loss has a public and private component. The public was too hard for me and exacerbated my fears, grief and depression. I burst out crying, sobbing uncontrollably on several occasions when I thought I was I was able to handle the “look” but I wasn’t. That was when I knew I needed to protect myself from those friends, strangers. The good thing is that I was able at my lowest emotionally to actually do it. Privately I was glad to have the support of my husband who allowed me to express all of my emotions, to grieve, to cry, in order to be able to move forward. As many have discovered, the hair is not the issue, it is how people perceive the new and possibly dying, you. The good news for all you newbies, is that it does get better, your ability to cope is in direct proportion to your time spent with this disease, and your knowledge base. The hair issue is fraught with all kinds of dilemmas on how to cope, and there is no shame in admitting you are NOT coping.
xxoo
Denise
BluebirdOne,
I understand the emotional side of the cancer. I too get tired of the "think positive" remarks. I have been dealing with inoperable breast cancer for 6 years and just waiting for bad news to come around. The bad news came in June when I was told my tumor had grown and was starting on a new experiment combo of pills. Then in July I was diagnosed with cancer again. After the surgery they diagnosed it as endometrial cancer, stage iii 2b, not breast cancer, Now I had 2 different cancers. Talk about a rollercoaster of emotions. I now have to leave the study treating my breast cancer to do both chemo and radiation for endometrial cancer. I question if the chemo will also keep my breast cancer at bay for the next 6 months til I can get back to another regiment for it or will it spread more through the lymph nodes in my chest where it has metastasized to. At times I just sit and cry. I know the endometrial cancer has a chance of reoccurring. So I feel defeated. I guess God is really testing me. I do not know how to feel about putting faith in this treatment.The stories here help give me hope. I just want to hurry up and get the next 6 months over with.
Connie
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Thank youBluebirdOne said:I wish I could give you a giant hug!
To any of our ladies dealing with two cancers at once! Talk about bad luck. The emotional side of cancer is too hard for those who have NOT had cancer to understand, hence the "think positive club" comments. I say to people who admonish me to think positive to remember that some days, many days, the act of getting out of bed, getting dressed, is thinking positive. Planting my gardens is thinking positive. I may not be all happy, happy, happy, but my actions are indicative of my mindset, for us cancer survivors, the act of doing anything normal can be evidence of thinking positively. The days, weeks, months of depression are very hard. I really dislike the sad platitudes that some offer. Surviving cancer, no matter how long your survival, no matter how many treatments you endure should be testament enough. We have enough days of feeling utterly hopeless and alone to face our futures. I know many are so well meaning, but it really bugs me that I am not allowed to face this cancer with what I have to fight with, even if it is not up to the standard others think I should have. We are intelligent beings, we can read the survival charts, we know recurrences, we know that even 1a folks die, but in the end all we really have to rely upon is ourselves, our own inner strength, OR LACK THERE OF. I am past the worst of the initial horror of my dx, my treatment, but always by my side is the emotional battle every day. So, I understand your pain, Primavera's pain, Cheese's many pains, as only a fellow sister can. Sometimes sitting and crying is all you can manage in any given day. No shame in that. I cried for a good year after my initial dx, now not so much because I am two years out, resigned to my possible fate, and to the other lucky notion that I might survive. Incredible to say, but one does adjust to the fact that one might be leaving the stage earlier than planned. I still buy plants for my garden that I know I might not see mature. But it gives me hope to plan the garden, plant the garden, and envision myself enjoying the garden with my loved ones. We are here for you. We really do care about what our fellow sisters are going through. (damn, where is the heart emoji when you need one.?)
xxoo
Denise
Thank you! You expressed so many of my thoughts. I'm so tired of being told to think positive. I was told today that I'm sure you will do well and don't worry about the recurrence because you're so positive! As if we could control this disease with our thoughts. And on the days that were so miserable and I was curled up in a ball under the covers, I was hurting my chances of recovery. You are right only someone who has fought the battle can understand. It's so nice to know that others feel the same way!
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I wish I could give you a giant hug!Connie0127 said:I understand
BluebirdOne,
I understand the emotional side of the cancer. I too get tired of the "think positive" remarks. I have been dealing with inoperable breast cancer for 6 years and just waiting for bad news to come around. The bad news came in June when I was told my tumor had grown and was starting on a new experiment combo of pills. Then in July I was diagnosed with cancer again. After the surgery they diagnosed it as endometrial cancer, stage iii 2b, not breast cancer, Now I had 2 different cancers. Talk about a rollercoaster of emotions. I now have to leave the study treating my breast cancer to do both chemo and radiation for endometrial cancer. I question if the chemo will also keep my breast cancer at bay for the next 6 months til I can get back to another regiment for it or will it spread more through the lymph nodes in my chest where it has metastasized to. At times I just sit and cry. I know the endometrial cancer has a chance of reoccurring. So I feel defeated. I guess God is really testing me. I do not know how to feel about putting faith in this treatment.The stories here help give me hope. I just want to hurry up and get the next 6 months over with.
Connie
To any of our ladies dealing with two cancers at once! Talk about bad luck. The emotional side of cancer is too hard for those who have NOT had cancer to understand, hence the "think positive club" comments. I say to people who admonish me to think positive to remember that some days, many days, the act of getting out of bed, getting dressed, is thinking positive. Planting my gardens is thinking positive. I may not be all happy, happy, happy, but my actions are indicative of my mindset, for us cancer survivors, the act of doing anything normal can be evidence of thinking positively. The days, weeks, months of depression are very hard. I really dislike the sad platitudes that some offer. Surviving cancer, no matter how long your survival, no matter how many treatments you endure should be testament enough. We have enough days of feeling utterly hopeless and alone to face our futures. I know many are so well meaning, but it really bugs me that I am not allowed to face this cancer with what I have to fight with, even if it is not up to the standard others think I should have. We are intelligent beings, we can read the survival charts, we know recurrences, we know that even 1a folks die, but in the end all we really have to rely upon is ourselves, our own inner strength, OR LACK THERE OF. I am past the worst of the initial horror of my dx, my treatment, but always by my side is the emotional battle every day. So, I understand your pain, Primavera's pain, Cheese's many pains, as only a fellow sister can. Sometimes sitting and crying is all you can manage in any given day. No shame in that. I cried for a good year after my initial dx, now not so much because I am two years out, resigned to my possible fate, and to the other lucky notion that I might survive. Incredible to say, but one does adjust to the fact that one might be leaving the stage earlier than planned. I still buy plants for my garden that I know I might not see mature. But it gives me hope to plan the garden, plant the garden, and envision myself enjoying the garden with my loved ones. We are here for you. We really do care about what our fellow sisters are going through. (damn, where is the heart emoji when you need one.?)
xxoo
Denise
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I think many of us are too hard on ourselves.els19 said:Thank you
Thank you! You expressed so many of my thoughts. I'm so tired of being told to think positive. I was told today that I'm sure you will do well and don't worry about the recurrence because you're so positive! As if we could control this disease with our thoughts. And on the days that were so miserable and I was curled up in a ball under the covers, I was hurting my chances of recovery. You are right only someone who has fought the battle can understand. It's so nice to know that others feel the same way!
As I have said before, there is no shame in letting yourself feel your emotions, trying to bury them because it is too painful to deal with them. Yes, it is painful. But for me, the more I gave into the grief, the sadness, the depression, allowed myself to feel these things, and ignore the happy police, I was better able to cope. I went to a Christmas party that i attend every year with many people from my block, none of whom knew about my recent cancer, chemo, and hairloss. Everyone was so great, respectful, kind, and supportive. I thought I was doing so well handling my first night out after finishing treatment but still with no hair. By the end of the night I was a sobbing mess, unable to control my emotions, unable to soothe myself, the few people left at the party surrounded me with their love and hugs, and let me melt into a puddle. I was so embarrassed at losing control after I was sure I could handle a few hours with friends. The good news is that I was able to give into my sorrow, and they let me. I felt so much better after having melted down. I derived a lot of new found strength from facing my fears, I was shocked. I realized that was the bottom for me, but also to recognize that feeling this way is normal, and that this will be a fight that I will have until I die. We can melt down, hide under the covers, be sad and depressed and it might do us some good. When you are in the throes of your emotions, it is so hard to see a way past it, but I could see that I was able to learn coping skills as my survivorship progressed. While still a very private person, I was able to find ways to confront my emotions when it was unavoidable that people know. But to show you what a chicken I am, I have still not told many members of my immediate extended family, because I just can't deal with them and what I know their reaction to me would be. So I avoid it to protect myself. I can only speak for myself, but I did experience all of the worst of my fears, faced them and found ways to cope. I hope that you can, too.
xxoo
Denise
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Thank you for you sharingTeddyandBears_Mom said:Welcome Anna. And, thank you
Welcome Anna. And, thank you for being such a great daughter! Your Mom is lucky to have you. Many of us on this forum have had UPSC. Much of what you read on the internet will give you old information. We have come a long way in surviving this cancer. I think we still have some active members that were staged at level 3 or higher. Hopefully, some of them will be along to help give you the support you need. From a personal perspective, I just had my 4.5 year check up. Still all clear and I'm feeling great.
You mentioned using Metformin. I don't have any experience for this. However, one of our members has documented a lot of her journey and success on her page. Please check out 'Takingcontrol's journey. I think you will find it helpful.
Please come back with any and all questions. Someone will come along to answer you.
Love and Hugs,
Cindi
Thank you for you sharing your experience! So happy for you to be free of this horrific disease! I was JUST diagnosed on Sept 28th and will be meeting with the Surgeon on Monday the 5th of Oct 2020
I am terrified and only know mine is the grade III and is the Serous endometrial cancer (UPSC) ANY HOPE in getting past thisis why I am here! I am only 57 and have no idea why I got it I have none of the causes other than I read it can be 24% more likely if used Baby powder which I always had till last Month! Any hope let me please hear your stories
Thank you all and May God bless you all with healing!!
Love and Hugs
~Diane0 -
Diane, I encourage you toDiane The Fighter said:Thank you for you sharing
Thank you for you sharing your experience! So happy for you to be free of this horrific disease! I was JUST diagnosed on Sept 28th and will be meeting with the Surgeon on Monday the 5th of Oct 2020
I am terrified and only know mine is the grade III and is the Serous endometrial cancer (UPSC) ANY HOPE in getting past thisis why I am here! I am only 57 and have no idea why I got it I have none of the causes other than I read it can be 24% more likely if used Baby powder which I always had till last Month! Any hope let me please hear your stories
Thank you all and May God bless you all with healing!!
Love and Hugs
~DianeDiane, I encourage you to start a new thread so you don't get lost in this thread and we can support you in your fight. There is quite a bit of good information here so please read - and ask anything you want. Please ask to work with a gynecologic oncologist to on Monday Oct 5. You are not alone.
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So sorry to hear you are dealing with thisDiane The Fighter said:Thank you for you sharing
Thank you for you sharing your experience! So happy for you to be free of this horrific disease! I was JUST diagnosed on Sept 28th and will be meeting with the Surgeon on Monday the 5th of Oct 2020
I am terrified and only know mine is the grade III and is the Serous endometrial cancer (UPSC) ANY HOPE in getting past thisis why I am here! I am only 57 and have no idea why I got it I have none of the causes other than I read it can be 24% more likely if used Baby powder which I always had till last Month! Any hope let me please hear your stories
Thank you all and May God bless you all with healing!!
Love and Hugs
~DianeBut this is a good place to learn and share your feeling with people who really understand. It is a very hard time you are in right now. There are lots of discussions about women during this time, and I think it helps to know you are not alone at all. And there is help. If you start a new post more women will see your comment. There are lots of suggestions that will help you immediately be able to ask very meaningful questions. And yes there is lots of hope for you.
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I just want to say, don'tDiane The Fighter said:Thank you for you sharing
Thank you for you sharing your experience! So happy for you to be free of this horrific disease! I was JUST diagnosed on Sept 28th and will be meeting with the Surgeon on Monday the 5th of Oct 2020
I am terrified and only know mine is the grade III and is the Serous endometrial cancer (UPSC) ANY HOPE in getting past thisis why I am here! I am only 57 and have no idea why I got it I have none of the causes other than I read it can be 24% more likely if used Baby powder which I always had till last Month! Any hope let me please hear your stories
Thank you all and May God bless you all with healing!!
Love and Hugs
~DianeI just want to say, don't beat yourself up about baby powder. I have no idea what the statistics are for that, or if they even prove anything (many/most studies don't actually prove anything), but if you have, say, a 1% chance of getting something, a 24% increase only takes you to a 1.24% chance.
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New to Serous endometrial cancer USPC DX Grade III
Hello everyone and thank you for this source of comfort! Of course I was terrfied when I 1st heard this news and I am going to my 1st consult with the Surgeon tomorrow. So as of now I have no idea of my stage but am told it is a grade III USPC. Have any of you had the grade III? I am worried of course and am only 57 and have none of the usual reasons of getting this as I had not even started menopause yet. I had used a lot of Baby powder over the years as I had read can increase the odds of getting this by 24%. I just am scared and asking for hope....I dont have family or much support....so I am worried about the surgery how long of down time I have horses and animals I need to take care of.
I really need some hope as I said scared about the grade III anything I need to know would be appreciated, several friends say do not do chemo?? Anyway to survive without having it?
Thank you again!!
Love and healing hugs to you all!!
~Diane0 -
Welcome Diane and so sorryDiane The Fighter said:New to Serous endometrial cancer USPC DX Grade III
Hello everyone and thank you for this source of comfort! Of course I was terrfied when I 1st heard this news and I am going to my 1st consult with the Surgeon tomorrow. So as of now I have no idea of my stage but am told it is a grade III USPC. Have any of you had the grade III? I am worried of course and am only 57 and have none of the usual reasons of getting this as I had not even started menopause yet. I had used a lot of Baby powder over the years as I had read can increase the odds of getting this by 24%. I just am scared and asking for hope....I dont have family or much support....so I am worried about the surgery how long of down time I have horses and animals I need to take care of.
I really need some hope as I said scared about the grade III anything I need to know would be appreciated, several friends say do not do chemo?? Anyway to survive without having it?
Thank you again!!
Love and healing hugs to you all!!
~DianeWelcome Diane and so sorry you need to be here. This is a scary time in your journey. It does get better. Most of us start feeling a sense of relief once we have a plan of attack in place.
If you are experiencing a lot of anxiety, don't hesitate to ask for meds. I'm not one to take pills but found it very helpful durig the initial stages of fighting this.
Hopefully you will be able to have laparoscopy surgery. If so, your healing time will be less. Also, I believe the standard treatment for UPSC is chemo and most likely brachy therapy. That's what I had and I was a stage 1A grade 3 UPSC person. This is an aggressive cancer. I would not skip chemo. While it isn't easy, it is certainly doable. Please take the time to read this thread: Ladies going through chemo..... I think you will find it helpful and may encourage you to proceed.
Please know that you are not alone. There are many of us here to help you along the way. This is an active board with loads of caring people to lift you up, answer you questions and listen when you just need to vent.
Let us know how your appointment goes tomorrow.
Love and Hugs,
Cindi
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Helpful Links
On another forum that is specific to my type of cancer (not UPSC but also a Grade 3 type), a member was living alone in Canada without family or close friends nearby. She hadn't lived in that area very long and didn't know her neighbors that well. She also had horses and other animals to take care of and was worried about how she would manage during treatment. In her case, her neighbors all pitched in to help once they learned about her situation. She was amazed and very grateful for the response.
So even if you're not that close to members of your community right now, don't hesitate to reach out to them once you know what your treatment plan is. Most people would be willing and happy to help, but often don't know what is needed.
I live alone, although I do have family and a close friend living nearby. I was able to manage most of the day-to-day activities during treatment myself, but I did get help when I needed it.
For you, the most difficult time might be right after surgery since there are restrictions on how much you can lift. In my case that meant having my sister or friend change out the cats' litter boxes since the litter containers weighed more than I was supposed to lift. In your case, it may mean having help with the feed bags and other animal-related tasks. The weight lifting restrictions lasted about 2-3 weeks for me, but it can vary by person.
Being told you have cancer, especially a rare type, is a shock to everyone. My gynecological oncologist was very frank with me, saying that we needed to treat this cancer aggressively at the onset to reduce the chance it would recur in the future. I certainly had difficult moments during treatment, but I am still NED (no evidence of disease) three years after my treatments ended. That puts me in the minority of women who have had my type of cancer.
Your friends may be thinking of the common form of uterine cancer, in which surgery alone can be curative. Unfortunately, that's not usually the case with Grade 3 cancers, unless caught VERY early.
Please see the FAQ topic that is at the top of this board's page. In addition to the link for Ladies going through chemo there is another link What do you wish someone had told you? that also has helpful information when first diagnosed.
Please let us know how thngs go after your appointment.
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The process
Getting a cancer diagnosis and then getting through what all that entails is a process. We tend to compare it to running a marathon rather than a sprint and it takes months up to a year to get through. There are many steps in the process: testing and preliminary diagnosis, surgery and recovery, final pathology for staging and getting a treatment plan, receiving treatment and recovering from it, and finally lots of follow-up appointments and testing to watch for and intervene should there be a recurrance.
Believe it or not, but where you are right now is probably the hardest time when you are dealing with the shock of your diagnosis and in desparate need of information and certainty about what you are facing and what you can do for yourself. It all takes time and a whole lot of patience to get through. We all turn to Dr. Google going through this, but you have to do so bearing in mind that this is a disease with a lot of variables that make each of us unique in how we get through this and so it's hard to know what applies to us specifically as we read. There's a lot that will needlessly scare you witless; much of it is outdated or just won't apply to you, so read keeping that in mind. Especially, ignore statistics that you encounter. They are generalities that are of little value trying to apply them to individual cases. We like to say that we are each a statistic of one so those online statistics are of little value to you personally.
Emotionally, it's easiest to get through all of this one bit at a time. The learning curve is huge and right now you need to focus on understanding what kind of surgery is being planned for you and how you are going to manage with what you have on your plate as you recover from it. Whatever kind of surgery you have, there will be lifting restrictions while you heal, so you won't be lifting bales of hay or mucking stalls for 4-6 weeks afterward. Don't be tempted to cheat on those restrictions, either, because you'd be risking pelvic organ prolapse as a consequence. (Your uterus helps to hold things in there place.) You don't want that on top of everything else. I'm sorry for this reality, but you do need to make some kind of arrangements for your animals so that you can focus on fighting your cancer. This is a battle for your life. Frontline treatment is your best shot at a cure, so you don't want other considerations to divert you from doing what you have to do.
It's all overwhelming in the beginning if you look at it all at once along with all of the possibilities. Laser in on just what you have to do each day to be ready for the next and bit by bit you will get through this. You are no longer alone because you have us to help get you through this. Hang in there and if you need help with your anxiety in the beginning, go ahead and ask your doctor for something...they are probably expecting you to. You will be in good company doing so and there is no weakness in using it. This is a time that you have to do what you have to do.
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