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Serous endometrial cancer (UPSC) - please give me hope

Molinari
Posts: 13
Joined: Aug 2020

Dearest members!

I'm from Stockholm Sweden. My 71- year old mother was diagnosed with UPSC stage II B for about 3 months ago. She underwent surgery and will have her fourth cycle of chemotherapy next week. During the chemotherapy a CT scan was performed and further investigation showed that had positive cytology in one of her paraaortic lymph nodes. As far as I know her staging is still IIB. 

I have read a lot of articles online reagarding UPSC and they all point to the fact that this type of cancer has a very poor prognosis. But I'm determined to help my mother in all possible ways and it would lovely if you members with the same type of cancer could share your stories with me. That would give me hope and strength to help my mother! 

I've read that alternative treatments like Metformin, Doxycycline and vitamin-D has a anti-cancer effects regarding studies, but are off-label. Do you have any experiences regarding this? Please share with me. 

Best regards

Anna 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2863
Joined: Mar 2013

Anna, there have been lots of members with varying stages of UPSC here, some who remain NED (No Evidence of Disease) You sweet mother is a statistic of one, and she certainly raised a wonderful daughter who is out searching for things to help her.  Hopefully one of the other lovely ladies here will be along to provide some support as well.  

Molinari
Posts: 13
Joined: Aug 2020

Dear NoTimeForCancer, thank you so much! I feel glad to read that there are some members with NED. It would be lovely if they could share their experiences with me. So thankful I found this community. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1734
Joined: Jun 2015

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

Molinari
Posts: 13
Joined: Aug 2020

Congratulations to your remission and for sharing your story! It is very helpful to me. What stage of disease did you have? 

Love,

Anna 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1734
Joined: Jun 2015

I had UPSC stage 1A. 

 

Diane The Fighter's picture
Diane The Fighter
Posts: 15
Joined: Oct 2020

Just curious, did you have a positive malignacy for the Peritoneal cytology wash the checked after your surgery? I am trying to decide if I will have any treatment of convential medicine, I have heard some horroble things for the treatments. My Dr wants to do the 25 radiation treamtents then chemo. Doesnt seem like you can survive ALL that    

Thank you for your time

cmb's picture
cmb
Posts: 625
Joined: Jan 2018

Diane,

I responded to your question about radiation treatment on another post. But your post above makes me think I didn't answer your question correctly there. Most of us, including myself, have had radiation after chemo, not before. Some women had the "sandwich" treatment - 3 cycles chemo, then radiation and then 3 final chemo cycles. You wouldn't typically have radiation before any chemo, unless there is a tumor in particular spot, which doesn't sound like it is in your case. So you should clarify with your doctor the order in which they are recommending treatment. The positive wash would suggest they would want to do chemo first since that is a systemic treatment.

I had a different chemo treatment than is usually recommended due to the nature of my cancer. This was followed by external radiation as a preventive measure for future recurrence. But I recovered from the chemo quite quickly. And for me, radiation was easier than chemo (although other ladies have found the opposite to be true for them).

I'd recommend at least trying the chemo. Most of the women here have made it through chemo without long-lasting side effects (although see the posts about icing your hands and feet).

I have an aggressive type of cancer too. Chemo and radiation have kept me NED for over three years. 

Charweaver47
Posts: 1
Joined: Nov 2020

You give me hope.  Newly diagnosed and glad I found this site.  I'll be back.  

Molly110
Posts: 184
Joined: Oct 2019

Charweaver, I'm sorry you were diagnosed but glad you found the discussion board. I was diagnosed in August/September of last year and have found  this board to be so helpful. If you want to introduce yourself or ask something spcefic, you can start a new thread where more people are likely to see you.

Wishing you the best on this new journey,

Molly

Diane The Fighter's picture
Diane The Fighter
Posts: 15
Joined: Oct 2020

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

~Diane

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2863
Joined: Mar 2013

Diane, 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.

Forherself's picture
Forherself
Posts: 492
Joined: Jan 2019

But 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.

LisaPizza's picture
LisaPizza
Posts: 336
Joined: Feb 2018

I 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.

EZLiving66's picture
EZLiving66
Posts: 1467
Joined: Oct 2015

I was diagnosed with UPSC almost five years ago Stage II or III (incomplete staging) and will be five years NED next month. I had a complete hysterectomy and only made it through three chemo. I've never had a recurrence - knock on wood - and I have a decent life! This cancer is not a death sentence!! My advice is to read everything you can especially on this board. I take Metformin and don't know if it's the reason I am still here but I'm sure not going to stop. Good luck to your mother!

 

Love, 

Eldri 

Molinari
Posts: 13
Joined: Aug 2020

Your information gives me hope! Thank you. What dose of Metformin do you take?

Love,

Anna 

EZLiving66's picture
EZLiving66
Posts: 1467
Joined: Oct 2015

2000 mg per day divided into two doses. So far, so good!

 

Love,

Eldri 

Molinari
Posts: 13
Joined: Aug 2020

do you have problems with episodes and symtoms of low blood sugar? 

EZLiving66's picture
EZLiving66
Posts: 1467
Joined: Oct 2015

Never and I also take glimepiride which lowers blood sugar.

Love,

Eldri

Maxster
Posts: 63
Joined: Apr 2020

I read your posting and because of some uncanny similarities I want to share my story.  I was diagnosed with StageIII UPSC in September of 2019.  I was 71 at the time.  I went through 6 rounds of chemo and 25 rounds of pelvic radiation.  The current preferred treatment according to doctors I saw at Memorial Sloan Kettering (a very prestigious cancer center) and UW-Madison in Wisconsins consisted of the chemo and brachytherapy of three to four rounds.  The radiation oncologist thought she saw another enlarged lymph node and suggested the full pelvic radiation.  So I went with that.  My daughter who lives in Stockholm Sweden made several trips to be with me during my treatment.  So she knows a lot about this disease. I was in such shock my kids did most of the research and I just complied until I could put my head around this.   I can try to put you in contact with her if you like.  I don't know if it would help you or not.  I am doing fine now but I kept as active as possible during treatment. It boosts the immune system and I ate lots of fiber.  I'm told now to avoid sugar as one of the cancer mutations likes it.  All based on research.  My follow-up is every three months for two years, then 6 months for three years, then annually.  My best to you and your mom.  There is lots of hope.  Don't read the Internet unless it is a site like this and always look at the dates of the information.

Molinari
Posts: 13
Joined: Aug 2020

I'm so glad to hear about your story and about the similaritiues regarding the stage of the disease and treatment. What type of chemotherapy did you have? My mother are planned to have 4 rounds of chemo - Carboplatin and Paklitaxel. Yes I would love to keep in contact with your daughter. Thank you again!

Maxster
Posts: 63
Joined: Apr 2020

Hi Anna, I had the same chemotherapy drugs as your mom had but I did have six rounds.  You might want to ask why only four rounds as that does not appear to be standard in the US.  This cancer is very sneaky and likes to leave the pelvis hence the need for chemo so the whole system gets a dose in case some cells escaped the uterus.  Did they recommend radiation?  The reason is the vaginal cuff is often the site of recurrence and radiation can stop that from happening. Can you private message me your email?  Then I can connect you with my daughter.  She is very open to hearing from you.

Molinari
Posts: 13
Joined: Aug 2020

Thank you for the information. My mother will talk to her oncologist next week and will ask about the decision of only 4 rounds of chemo. She had positive cytology in one of her paraaortic lymph nodes, so it's an important question. Yes, she will have radiation after chemo. How do you private message? It would be lovely to hear from your daughter. Thank you! 

Forherself's picture
Forherself
Posts: 492
Joined: Jan 2019

It took me awhile to realize this.  Uterine cancer.  They used to do the hysterectomy, look at it, and say this is early stage, nothing more required. So women with lower stage cancers were not fully staged, and they weren't REALLY lower stage.  If they had looked like they do now, at lymph nodes and abdominal wash, and CT scans of body they would have staged some women at a higher stage.  They do complete staging now.  But old studies include women who were not staged correctly, so it makes the lower stages look like the survival is lower than it is.  The older studies scared me too.   I try to not look at anything that is over 10 years old, and even that is old.  It would be nice to use only 5 year old information but there isn't much.  There are lots of survivors on here with your mother's stage, but they tend to drift away.  

 

Molinari
Posts: 13
Joined: Aug 2020

Thank you for sharing this information! What type of uterine cancer and stage did you have? 

Forherself's picture
Forherself
Posts: 492
Joined: Jan 2019

My story is on my blog.  2 years NED, no evidence of disease.

Molinari
Posts: 13
Joined: Aug 2020

I'll find your blog.

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Just wanted to welcome you here and tell you that there is great hope! I did not have UPSC, but did have endometrioid endometrial adenocarcinoma, Stage IVB, Grade 2.  I am almost three years No Evidence of Disease.  I had surgery and then six rounds of chemotherapy.  I do take metformin, 500mg in the morning and 500mg at night. It was not prescribed by my cancer doctor, but I read the research and asked my primary care doctor for it. Blessings to you and your dear mother.  Let us know how she is.

Molinari
Posts: 13
Joined: Aug 2020

Thank you! And congratulations for being with NED. That's wonderful! I'll read more research about Metformin. I just talked to my mother about this medication and she got worried of getting episodes of low blood sugar and the symtoms following it. Do you expereince this?

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

I just saw your question.  No, my glucose levels have not changed at all and I have no symptoms at all from the metformin.  Doctor mentioned I might get diarrhea but I didn't even get that.  

Molinari
Posts: 13
Joined: Aug 2020

No problems! That was wonderful news. 

cheerful
Posts: 266
Joined: Apr 2011

Dear Anna:

  I want to give your Mom a lot of hope - she has an excellent chance of surviving this cancer.  I was diagnosed with (UPSC) Stage 1 in February of 2011 (9 1/2 years ago) and I am still here.   I did go through 6 rounds of chemotherapy and 3 rounds of radiation (brachytherapy).  The chemo is doable and the radiation is easier to go through.  I was 59 1/2 when I was diagnosed and now I am 69.  This disease does strike woman around the average age of 68 so I was on the younger side to get this disease.  The reason I survived as I had a 90% chance or survival plus my histology was good and my age was on the younger side.  I had a hysterectomy but did not have my lymph nodes removed or my omentum because my gynocologist did my surgery and afterwards he recommended I see an oncologist who he knew from the hospital where I had my surgery. My oncologist mentioned to me to treat this cancer aggressively and I took his advice and went through chemo.  I did read on the Internet that if one with Stage 1 did not go through chemo, you had a 43% chance of it reoccurring and I did not want to leave this to chance. Plus UPSC is a very sneaky cancer and it can return on the pelvic area.  After  your Mom is done with her treatments, her oncologist will probably want to see your Mom probably every 3 to 6 months and she will have to go for reoccurring cat and pelvic scans.  I have several of the cat scans of the abdomen and pelvis done through the years and I also had a couple of Pet scans done as well.  Since that time in the last couple of years, my oncologist has since semi-retired and now I see another oncologist that took over for him. He is a wondeful doctor as well as my former oncologist is as well, and they are both very knowledgeable and they each have over 30 years of experience between them.    Your Mother will most likely have to go through an oncologist visit for the rest of her life - at least once a year down the road.  I wish your Mom all the best as she goes through this cancer journey and the women on the Board here are very knowledgeable and so very helpful and great women as well if you have any questions.  I am on the Board occasionally as I am not going through treatment anymore but do check in from time to time to see how the women are doing.

Cheerful

a/k/a Jane

Molinari
Posts: 13
Joined: Aug 2020

thank you so much for sharing your story and it gives me hope! My mother is planned to have 4 cycles of chemo, but she'll ask the oncologist next week about having 6 cycles that seems to the be the standard treatment in US. Finding this board was a true blessing! 

Molly110
Posts: 184
Joined: Oct 2019

Molinari, how great that you are helping your mom out.  I'm glad you found this site. Like your mom, I had USPC. (I use the past tense on the advice of my acupuncturist, although I know it could be lurking somewhere in me. I was stage 1 and was treated with what is standard in the US -- six rounds of taxol and carboplatin (basically the same drugs as your mom) and brachytherapy, which is internal vaginal radiation. The center where I was treated always does 5, although I think 3-4 is more common. 

One thing I learned from this discussion board is that there is every reason for you and your mom to hope.  *Many* women who post or used to poast here had/have Stage II ot III USPC and are thriving many years after treatment, while some women who were, like me, stage I, have died. I made the decision very early on not to research this cancer. Instead, I am relying on my gynecologist/oncologist, who is brilliant and highly experienced with this cancer, and doing what he advises me to do. After diagnosis, the first thing I read was a study that opened with a statement that this was a "rare, malignant" cancer with a very poor progosis. I knew if I kept reading I would decide against treatment.  One of the things I told my care team early on is that I did not want to know the survival statistics. I still don't want to know. 

I found the chemo and radiation very easy to deal with, which was a surprise, and I hope your mom does also. You may want to explore icing her hands and feet if her doctor has not already recommended it. It seems pretty effective in preventing chemotherapy-induced periperhal neuropathy. I started late, so I have a fair amount of neuropath. Many women don't get neuropathy at all, so don't get discouraged by my experience of it.

I was diagnosed a year ago this month and completed treatment 7 months ago, so I am still pretty new to it all. I have found the information from women on this board to be so useful throughout my treatment abd beyond.

Warm best wishes to you and your mom.

yetti's picture
yetti
Posts: 42
Joined: May 2019

Hello EZ. LIving. I am a stage 4 survivor of endometrial cancer. I am on letrozole. And Im NED. For 1 yr and 4 mths. Since April. 2019. I was also prescribed. Metformn. I take in the evening after dinner. 500 mg daily.  I was hoping you could tell me how this med helps with cancer. Thanks. Yetti 

EZLiving66's picture
EZLiving66
Posts: 1467
Joined: Oct 2015

I'm sorry I just saw this. Takingcontrol58 is the one to "talk to." During chemo my blood glucose was going over 600 and even though it came down my GP was willing to prescribe it for me. There are some clinical trials using it to keep the UPSC from spreading. I will be NED (No Evidence of Disease) for five years this September 30th. Is it because of the Metformin? I don't know but I'm not going off of it.

Love,

Eldri

Connie0127
Posts: 14
Joined: Aug 2020

Hi

Just checking in as a newby.

I was diagnosed with endometrioid endometrial adenocarcinoma, the end of July and had my hysterectomy August 6 2020. Now my treatment is going to be 30 rounds radiation and I believe 6 rounds of chemo. I also have metastasized breast cancer on my liver. I have read that the chemo they will be using is good for breast cancer treatment, which I hope is true since I will be put out of a study for the breast cancer medication due to chemo. 

I am still questioning life. I have had the breast cancer tumor for 6 years and last month a CT showed that it had grown and showed "puffiness" in my chest area.It seems all is caving in on me now. Asking for prayers and strength to get through this new cancer. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1734
Joined: Jun 2015

Connie0127, I'm so sorry that you are having to go through this. Glad you found our board. You will find loads of support and answers to many of your questions.

I hope you are healing well from your surgery. There are many women on this board that have had the same treatment regimine that you will be going through. Please reach out with any questions and someone that has been there will answer.  I can tell you that the chemo that you will be getting is not easy but it is doable. It goes by fairly quickly. Be kind to yourself and listen to your body. Rest, drink tons of water and try to get a bit of walking in every day.  You can do this! You are stronger than you think.

Love and Hugs,

Cindi

 

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Praying for you now.  You've bravely faced your cancer for 6 years, and you've gotten through 100% of those tough days - you will get through this too!  We are here to help you and cheer you on.  Be kind to yourself - you are newly out of surgery.  Let yourself heal and rest to prepare for the journey ahead.  Almost all of us have been through surgery, chemo and/or radiation, and we have all found it do-able.  You're not alone. God bless.

Forherself's picture
Forherself
Posts: 492
Joined: Jan 2019

Dear Connie welcome and prayers for you.  What a lot to deal with.  Endometrioid endometrial cancer is the less agressive one depending on grade, so that is hopeful.  I would ask your oncologist if the chemo will treat both types of cancer.  I think some of them do.  You want to know the grade of your cancer as well as the stage.  It must be so much to take in all at once.  We offer a lot of support here.  I think we are much more active than the breast cancer discussion board.  The emotional challenges of this disease can be overwehlming.  I hope you have support from family and friends.  We have several members here who have breast cancer and endometrial cancer.  Maybe they will comment too.  Keep in touch.

Connie0127
Posts: 14
Joined: Aug 2020

Forherself,

The chemo I will be getting are Carboplatin, Taxol, and starting with Cisplatin. Yes, they all help with breast cancer, which is good song breast cancer will not be taking a break from treatment. My endometrial cancer was stage lllc, grade 2. It had spread to my right pelvic lymph node, which was taken out. 

I do have support from my family and friends. I have a very supportive husband who I worry about his self care at times. We set appointments around his schedule so he can be with me. We talk about my fears, but I worry about his fears. 

Thanks people for the welcoming posts.

Molly110
Posts: 184
Joined: Oct 2019

Warm wishes, Connie. I'm so sorry for this new challenge. If it helps to know this, when I was diagnosed -- just about a year ago -- I was terrified of chemo. My wonderful gynecologist/oncologist told me that if my idea of chemo came from friends and family members who I'd seen go through breast cancer chemo he wanted me to know that uterine cancer chemo was generally considered much easier to get through. He was right for me, and I hope you have the same relatively easy experience that I had. It was a real comfort to me, as well as a great source of information, that the women who post on this board have worlds of experience to share. 

 

You now have all of us pulling for you.

 

Molly

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2863
Joined: Mar 2013

Connie, I can't imagine how tough it is for you right now.  Your post has caused me to stop and pause.  My prayers are with you.

zsazsa1
Posts: 553
Joined: Oct 2018

Molinari, the standard treatment is carboplatin plus taxol, and possibly herceptin, if her tumor shows high levels of her2neu receptors.  You should ask for the tumor to be tested for this.  After that would be pelvic radiation of some sort.  If she has a para-aortic node that looks like a metastasis, you might want to investigate whether she'd be a candidate for proton beam radiation.  This is highly focused radiation, fairly new, and it's available in Sweden.

Connie0127
Posts: 14
Joined: Aug 2020

Why is it that metformin helps with the chemo? I am on metformin because I was diabetic, but now am on the line of being diabetic.

I also was wondering, how long will it take to loose my hair when I start chemo?

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Connie, I'm not sure metformin helps with chemo, but it seems to help prevent cancer recurrence.  If you google it, the studies will come up to show you the hows and whys.

Also, you will probably start to lose your hair about 3 weeks after you start chemo.  I know it sounds awful, but it is so temporary and it really will be ok.  Go and choose a wig you like so you'll have it ready to go.  The cancer society has resources, and your health insurance may cover the cost of a wig.  I'd also suggest some soft cotton knit (like t-shirt material) caps - I called them my beanies - for sleeping and wearing around the house.  So cozy and comfy and keep your ears warm while you're sleeping! I found one silver lining in the cloud of hair loss - the absolutely wonderful feel of a warm shower on your head.  It was a pure blessing during a time of trial.  Enjoy it, and enjoy being able to get ready and out the door much faster when you just have to toss that wig on your head and go!

 

Molly110
Posts: 184
Joined: Oct 2019

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.

Connie0127
Posts: 14
Joined: Aug 2020

Molly, I am there with you on saddness at losing my hair. I am going to hate it. Thanks for the encouragement..

BluebirdOne's picture
BluebirdOne
Posts: 370
Joined: Jul 2018

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 

Molly110
Posts: 184
Joined: Oct 2019

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.

 

BluebirdOne's picture
BluebirdOne
Posts: 370
Joined: Jul 2018

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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