New to Board 2 Year Survivor

Welcome!
I would like to join Karen in welcoming you to the group. I have found this place a good source of information and encouragement. Hope you do too!!!

Ro10 said:

Welcome Sairy
So glad you found us. Congratulations on your being a 2 year survivor. Look forward to your future posts. In peace and caring.

Welcome Sairy
I think you have so much to offer; especially to the younger gals. We are a great group! My only complaint is I wish we could all meet! You have been through alot. When the younger gals find out you are on I am sure they have questions about hormones, etc. You are doing great!

Diane

vivalavida said:

another newcomer
I'm glad to have find this site since I am another 36 year old who got diagnosed with uterine cancer and more precisely Leiomyosarcoma in April 2009. I have had a total hysterectomy and salpingo-oopheorectomy followed by 4 rounds of Gemtar/Taxotere treatments. I am followed by a sarcoma specialist who has alweays been very careful dealing with this type of rare cancer. I have read abundantly for the past year about risks associated with this cancer and the medical surveillance required in order to stay disease free. I have not done any ct scan or chest x-ray since january 15, 2010. I am on a waiting list for a Pet-scan that should be done at the end of August or September. I am a little anxious since I know that the standard protocol is a 3-4 months ct scan. On the other hand, I have read in early 2010, that almost 30 000 cancer will be diagnosed in the US only because of multiple radiation exposure (ct scans). I know that my doctor has some serious concerns about this but of course doctors don't want to express them in front of an already anxious patient!
What do you think! Isn't odd that recurrence mostly occur in the lungs which is the main target of radiation?

Isabelle

Isabelle...welcome!
I'd like to comment about the CT scans and other issues with over-exposure to radiation. I had chemo and 33 sessions of radiation / pelvic and after reading about the huge amount of radiation from these scans I had a talk with my doc. We were scheduled to do a CT scan every 3 months for the first 2 years and after I expressed my concern on radiation he was very open to a great discussion. Since my CA-125 marker is one he can follow (due to movement being consistent from prognosis of cancer to the final treatment), we're only setup for scan every 6 months or now every 8 month. He'll do every 4 month of pelvic exam and blood work and if the numbers or reports show something suspicious, then he'll do a scan if not scheduled for that time.

I've also mentioned about getting PET or MRI scans and he tells me still have some radiation on these, too, but not as much as cat. Told me with uterine the PET/MRI aren't the chosen scans which insurance will pay for at first. But...we could possibly push the issue to request these tests.

Mary Ann (Daisy) who's on these boards has had success getting a PET done at first round and insurnace will pay, so there's options too. ALso, some docs don't do scans just blood work and if notice something on those reports, then do scan. Seems like much of this depends on your doctor.

My doc would have never brought up about not doing the scan, unless I did. So be proactive and remember THIS IS YOUR BODY, AND YOU ARE IN CONTROL!!!

Best to you,
Jan

vivalavida said:

Bewildered!
Thank you Jan

You can't imagine how your reply comes in at a good time for me. I was very confused until I read your post. I asked for a sign that would lead me to take the right decision for myself. Well it worked again (Guess what, I'm a fan of the book "The Secret"!
Thank you for your support.

My doc must think I'm crazy I was the one who insisted I should have a closer follow-up! I got a CT scheduled for this wednesday. I left a message today to my doc's office in order to discuss the situation.

I know that she will call me back tomorrow. I changed a lot of things in my life since the diagnosis fell on me. One of them is that I am trying to have more confidence in life and believe that a lot of good things are out there for everyone to enjoy!

Have you been NED for more than 2 years? What is your outlook on life now?

Isabelle

The Secret~
Isabelle,

This is an amazing book/CD that I've started to follow over past year or so. I haven't watched it in a while and time to sit down and watch again, to remind myself of the thought processes. Great insight!!

One thing that is just hitting the news is many docs are over testing us due to scare of being sued. So...wow add that on top of everything else we're tryng to run from with tests. I know in my mind I have to take the bull by the horns and be in charge.....not the doc!!!! Don't get me wrong they are the experts in that field, but I'm the expert on knowing my body and what I think is best.

I had my last treatment July '09 so looking at NED for 1 year....looking forward to 2 years. Outlook on life? Well...must say it's much different since the diagnosis as I take each minute, hour and day as it comes and do enjoy it to the best of my ability. I've learned to be more relaxed and take care of my body, as it must hold me up. Our bodies are like our castles and if they fall, we fall!!

I've gotten more into yoga and deep meditation which has lowered my stress. I've always been a big workout gal (runner mainly), but had to put much of that running stuff on back burner during treatments. Today I'm back into running, but not race type levels.

Life is better and can't believe I'm saying this, cancer has made me view life thru rose colored glasses and it's great!!!!! Look at the cancer as a wake-up call and needed to adjust things in life.

How is your outlook on life? What do you think you want to do about your upcoming scans? Talk with your doc?

Best to you and hope I've helped!
Jan

vivalavida said:

The Secret -Sequel
Hello Jan,

Be sure that your posts are helping.Since my diagnosis in April 2009, I resolutely decided to make place for change in my life. First, by reading a lot about the cancer itself and when I felt that that didn't help, somehow I directed myself to other kind of readings such, Buddhism, positive psychology, The Angels Bible (translation because I read it in French), the Why Cafe and recently the Secret. I haven't seen the DVD, is it worthwhile if you have read the book? I have the same outlook on life as you. I truly was awakened by that book and I think that it cannot be understood unless you've been through a dramatic experience in life. That's why a colleague of mine stopped at the first pages.

In fact, I sometimes feel like I know incredibly important things about the value of life that other people don't grasp yet. Of course, I'm excluding my immediate family because they assisted and cared for me during this difficult path. Because of the cancer, i just can't stop organizing partys! And because I know that life is fragile, I organized a surprise party for my mother where I invited lost friends and even close family with whom we had lost contact.

I would never go back to 2009, 2010 is much better, my life is fuller, i reunited with all my family, I don't expect as much from people (even from people working for me!!!), I reduced the high-standards I had always imposed on myself and most of all.... I BREATHE.... I think I had forgotten how.

As for my doc, I spoke to her wonderful assistant this morning and told her that I would do the CT as was her first recommandation unless she calls me back to I say I should.

I agree with you that we should make decisions for ourselves when it comes to our body but in this case, I think I was overanxious and my doc was right.

So, next Pet-scan in August and next physical exam and blood tests at the end of the month.

One last thing, what do you know about estradiol patch? is it HRT? is it risky?

So long,

Isabelle

Value Life~
Yes we both value life and care for others and our futures. Nice way to be!

HRT or patch? No my doc will not put me on this due to my cancer and having had hysterectomy. So....I go with the natural alternatives -- vitamines, exercise, etc. I'll do anything to avoid drugs, so you can imagine how I felt for my first chemo session. Thought the world was ending with toxins dripping inside my body....but as other sessions added on, I was fine with it.

One thing my doc suggested was Fosomax for bone thinning. I agreed but after doing my research, decided NO WAY. The side-affects are fairly high and even more so after 5 years -- jaw pain issues. Had the talk with him at last week appt and told him no but will beef up my weight-bearing exercises and vitamins calcium & D3. Mentioned another drug which I just glossed over, but he's not going to give up. But...my doc is understanding and knows my side of story is how I wish to proceed, but am open to his suggestions. I'll give the vitamins and weight-bearing part one year and if bone density isn't good, look at drugs (boo hoo!!)

Best to you,
Jan

vivalavida said:

another newcomer
I'm glad to have find this site since I am another 36 year old who got diagnosed with uterine cancer and more precisely Leiomyosarcoma in April 2009. I have had a total hysterectomy and salpingo-oopheorectomy followed by 4 rounds of Gemtar/Taxotere treatments. I am followed by a sarcoma specialist who has alweays been very careful dealing with this type of rare cancer. I have read abundantly for the past year about risks associated with this cancer and the medical surveillance required in order to stay disease free. I have not done any ct scan or chest x-ray since january 15, 2010. I am on a waiting list for a Pet-scan that should be done at the end of August or September. I am a little anxious since I know that the standard protocol is a 3-4 months ct scan. On the other hand, I have read in early 2010, that almost 30 000 cancer will be diagnosed in the US only because of multiple radiation exposure (ct scans). I know that my doctor has some serious concerns about this but of course doctors don't want to express them in front of an already anxious patient!
What do you think! Isn't odd that recurrence mostly occur in the lungs which is the main target of radiation?

Isabelle

Leiomyosarcoma
What did your doctor ways about hormone treatments and how to handle it.??? I too had Leiomyosarcoma in the uterus and with no hormones 2 years later I am still a little off skelter?? Just curious what you were told!

Well what I was told about the recurrance rate would be if it did spread and one little cell got in your lymphnoids then yes the lungs is the first place that it would go to! Odd yes it is but that is was makes this cancer one of the most aggresive cancers ever! I had radiation and fingers crossed I am a couple of months away of 2 years cancer free! Praise GOD!

jazzy1 said:

Value Life~
Yes we both value life and care for others and our futures. Nice way to be!

HRT or patch? No my doc will not put me on this due to my cancer and having had hysterectomy. So....I go with the natural alternatives -- vitamines, exercise, etc. I'll do anything to avoid drugs, so you can imagine how I felt for my first chemo session. Thought the world was ending with toxins dripping inside my body....but as other sessions added on, I was fine with it.

One thing my doc suggested was Fosomax for bone thinning. I agreed but after doing my research, decided NO WAY. The side-affects are fairly high and even more so after 5 years -- jaw pain issues. Had the talk with him at last week appt and told him no but will beef up my weight-bearing exercises and vitamins calcium & D3. Mentioned another drug which I just glossed over, but he's not going to give up. But...my doc is understanding and knows my side of story is how I wish to proceed, but am open to his suggestions. I'll give the vitamins and weight-bearing part one year and if bone density isn't good, look at drugs (boo hoo!!)

Best to you,
Jan

HRT
Coming up on 19 years as a survivior. I was in Ovarian failure at the time of surgery, and was having hot flashes every 15 minutes! My oncologist (bless him) put me on HRT (both estrogen and progesterone) and that took care of the hot flashes, vaginal dryness, the weepy mood swings et al. I have been on them until this year when my GP *insisted* I stop because they affected my triglycerides and cholesterol so badly. I *STILL* have hot flashes and dryness, thought not as frequently, and the mood swings. *sigh*

I was 35 when I was diagnosed.

Rachel

kathijr said:

I'm Also Kind of New
I a very young and fit 56 and was recently diagnosed with uterine cancer and will not know the exact stage or level of treatment needed until my surgery on August 20. It is so difficult to wait not knowing the true information about the cancer, what treatment I'll need after, and how this will affect my health, marriage, and overall life quality. I was led to believe by everyone that the cancer is at a very early stage and that the surgery would be the treatment, but after reading these boards, I now know that this may not be true.

It all makes me very emotional because my fairy tale marriage may be about to totally change, I may never have sex again (I can't dream of doing it now and can't imagine wanting to do it later with no hormones in my body and possible chemotherapy and radiation), I may loose my energy and strength for all the physical work that I do, and may look like an out of shape blob and worst of all, I could loose my life.

I can relate to your situation because I put having children on hold because of my work and career and I couldn't meet the right person. When I did in my early 40's, we tried to get pregnant with no success (ironically, when we went through the fertility evaluation they checked my estrogen levels and found them to be very low.) I have so many emotions ranging from anger to sadness and bitterness over loosing what was and for what I never had. My fear is that I won't be a real woman anymore after hysterectomy and cancer treatments and that I'll appear to be an androgonous old person. There is so much information out there about how to stay young and healthy as we age, but really nothing for women like us who have been through an extreme health trauma involving our reproductive organs.

I am sorry for your diagnosis and hope that you can find strength, healing, peace and hope for the future.

((((Kathijr))). I can see you are in a dark place & feel so bad
Kathi, please don't feel like you will never have sex again! ALL of the women here will tell you that your sex life will continue after your surgery, as that intimacy will be more important then ever when you and your husband are going through this journey together. I feel responsible for bursting your bubble by telling you that you won't get your staging until after the hysterectomy pathology, seeing now how that information has taken you to a dark place where you do not even feel like being physical with your husband. I feel horrible about that. Because now is the time when you should be reaching out to him and you should be comforting each other the way husbands and wives comfort each other. There will be a 'dry spell' for a month after your surgery; so you should be "making hay now while the sun shines', as they say. So much of the pleasure of sex is in your mind, and if you believe you are already old and sexless, you won't have fun. But if you believe (rightly so!) that you are still the sexy YOU, you will. Perhaps you and your husband would benefit from some counseling now; I am worried about you. Regardless, please be open to having an intimate relationship with your husband during these weeks before your surgery. You won't regret it. You need to be as close to him as you can as this journey begins because this is happening to him, too, and he will take his cue from you. ((((Kathi)))). You ARE a real woman, now and always.

You STILL have a VERY good chance that you are Stage 1 and have a very CURABLE cancer. You could get away with no chemo and no radiation; the uterine cancers that require that are RARE. Are you getting daVinci (robotic) surgery? If so, you will hardly even have scars!

lindaprocopio said:

((((Kathijr))). I can see you are in a dark place & feel so bad
Kathi, please don't feel like you will never have sex again! ALL of the women here will tell you that your sex life will continue after your surgery, as that intimacy will be more important then ever when you and your husband are going through this journey together. I feel responsible for bursting your bubble by telling you that you won't get your staging until after the hysterectomy pathology, seeing now how that information has taken you to a dark place where you do not even feel like being physical with your husband. I feel horrible about that. Because now is the time when you should be reaching out to him and you should be comforting each other the way husbands and wives comfort each other. There will be a 'dry spell' for a month after your surgery; so you should be "making hay now while the sun shines', as they say. So much of the pleasure of sex is in your mind, and if you believe you are already old and sexless, you won't have fun. But if you believe (rightly so!) that you are still the sexy YOU, you will. Perhaps you and your husband would benefit from some counseling now; I am worried about you. Regardless, please be open to having an intimate relationship with your husband during these weeks before your surgery. You won't regret it. You need to be as close to him as you can as this journey begins because this is happening to him, too, and he will take his cue from you. ((((Kathi)))). You ARE a real woman, now and always.

You STILL have a VERY good chance that you are Stage 1 and have a very CURABLE cancer. You could get away with no chemo and no radiation; the uterine cancers that require that are RARE. Are you getting daVinci (robotic) surgery? If so, you will hardly even have scars!

Kathijr I can see you are in a dark place & feel so bad
Linda,

Thanks for your kind message and reassurance. I absolutely don't want you to feel that you caused the way I am feeling---although your situation scared me a lot given that you had no symptoms and were getting regular checkups, etc. After reading messages on this Board and others, I am definitely thinking that I will need chemo and radiation (and then if I don't, it will be a relief and pleasant surprise) and am even planning in the event that I need chemo that I'll have all of my hair shaved off and made into a wig or a hairpiece prior to the treatments. Anyhow, I was definitely feeling very depressed before I even joined this board and I think the waiting is just so hard, especially given that the stage of my cancer is unknown at this time and everyone reacts differently to this surgery (I could have few to no side effects or it could be really bad or something in between.) I think the idea of making love with my husband is a very sensitive subject right now because one of the reasons I started taking the bioidentical hormones is that I was experiencing a lack of libido, extreme vaginal dryness, etc. as a part of menopause. After much study, I also read that these hormones could have other health benefits and my gyno said that the risk of taking them was small. So, of course, I am now feeling awful that they may have been a major contributor to my getting this cancer---somehow, sex just doesn't seem important anymore and it may have to be a fond memory for a while. I feel terrible for my husband, who is the innocent victim of this terrible situation---he doesn't deserve this. Since my estrogen and testosterone levels were very low when I was experiencing those sexual problems and the hormones really helped me, it's hard to imagine that sex will be exactly the same for me. Anyhow, life must go on, even if everything is greatly changed. I so much appreciate all of the messages of hope and encouragement on this Board----thank you everyone and I will keep you posted.