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Hysterectomy after all

misstaylor84's picture
misstaylor84
Posts: 18
Joined: Aug 2021

Yesterday was my follow up appointment where my gyn onco went over the MRI. It is stage 1a, with less than 50% invasion into the myometrum but she said it's not a good idea to go forward with fertility sparing treatment. 

I feel like I have NO say or control and a hysterectomy is not what I want. I am 37 years old. She said when she does the surgery she's going to check lymph nodes and if they aren't affected I get to keep my ovaries so I don't go into menopause but I am thinking wow, what's the point in even trying to go for that because she was wrong about the fertility treatment. 

I feel so pissed off and downright angry. The megestrol and IUD has been shown to shrink and cure cancer of this type. Shouldn't I get to have some sort of say?? 

I hate this whole experience. I would rather be dead.  

Kathy G.'s picture
Kathy G.
Posts: 229
Joined: Dec 2012

Dear Misstaylor...I read your post and it makes me so sad for you! I am sorry you have to have a hysterectomy so young and the possibility of having children has been taken from you by this awful disease! It is SO unfair...particularly at such a young age. I can certainly understand your anger and depression. 

 

I cant remember if you got a 2nd opinion, but if not you may want to consider doing so. It may not change anything, but may be helpful in providing you with more information.

Try to focus on it being stage 1a and less than 50% invasion. That is good news when things could be so much worse. They can't grade it until after surgery, but it sounds as though it was caught early!

Wishing you peace and serenity as you travel this road.

 

Kathy

oldbeauty
Posts: 316
Joined: May 2012

I can understand it must be a devastating double whammy to find out that bearing a child yourself is foreclosed because of need for a hysterectomy.  My sympathies to you and your husband.

You do have control, just not total control.  Who among us has total control over the courses of their lives?  You can elect to have no treatment; you can decline to consent to removing your ovaries over the surgeon's objection; you can decide to wait some months and have another CT to find out whether you are holding firm or your disease has progressed.  One problem is you can't obtain the facts that will allow you to get a better handle on your risks without removing the cancerous tissue and having the pathology done.  You may have early stage yet high grade type of cancer cells.  It's all a crapshoot until you get the known cancerous tissue out.  You just do your best decision-making for what you deem your top priority(ies) with sound counsel from a qualified gynecolgical oncologist.

However...I am mainly posting to say that early stage endometrioid cancer is no guarantee of a cure.  I was Stage IC yet I have addressed this disease four times in 16 years, including a period where I was on progesterone therapy.  The megestrol is not necessarily going to work for you long term.  I seemed to get benefit from it for 4 years between my first and second recurrence.  You can click on my name for my story.  Eventually, the progesterone receptors that provide a platform for the medication to slow the progress of the disease degrade to the point where the medication loses its efficacy.  Or, perhaps, in my case, it never did work and my time between recurrences was due to the fact that I have turned out to have a demonstrably slow-growing variant.  You never know.  I had a total hysterectomy at age 51 followed by radiation and was declared cured.  Yet the disease has come back several times.

I hope you have an outlet to voice your anger and sadness effectively.  Just as important is to confront your diagnosis thoughtfully and decide on a treatment plan that gives you the best chance for a long life and the opportunity to pursue your dreams, just perhaps not in the way that you always hoped.  

Best wishes to you and your husband as you navigate this traumatic path.  Oldbeauty

Harmanygroves's picture
Harmanygroves
Posts: 223
Joined: Jun 2021

I have the 1988 Stage 1 C as well. It is so helpful for me to hear your story.

Stage 1 is no guaruntee of "easy street," and thanks for reminding all of us of that information.

And yes, heartfelt support to MissTaylor and her husband. It's a hard pill to swallow. 

Harmanygroves's picture
Harmanygroves
Posts: 223
Joined: Jun 2021

I always try to be cautious about imposing what "I" want with a specialist until I hear their advice. It may be that your anger / sadness affected the way that your doctor responded to you initially. Also, it may be that you "heard" more positive information than they shared. All that said...

It is normal to be furious, sad, depressed, and grieving, and I am so sorry. 

Your low grade and low stage, as long as your cancer hasn't escaped the uterus and is in your ovaries. / tubes, means you will probably stay healthier longer than many women in this site.

"I would rather be dead" hits me pretty hard in the face this morning, given I've got a lot of pain and stress I'm carrying too, as many women in this site are. 

Nevertheless, I'm very sorry. 

 

BluebirdOne's picture
BluebirdOne
Posts: 450
Joined: Jul 2018

your original gynecologist, if possible. I understand that you are struggling with job loss and insurance issues, so that is a factor. My 1st gynecologist was crackers, incompetent and referred me to his favorite GO, whom I took an instant disliking to. Many of the larger institutions will do a virtual 2nd opinion, your records get sent and they review them. When I received my 2nd opinion they initially reviewed all of my records confirming the dx, and then I was invited for a physical consultation, surgery. You have two major issues here, preserving your fertility and treating your cancer. Did your GO tell you exactly why they felt that fertitlity sparing treatment was not recommended for you? With such a major decision for you going forward, having another GO reviewing your case will hopefully answer some of your questions and doubts, confirm or offer you another option. I hope you can find answers and peace of mind what ever you decide to do, and we are here for you regardless. Good luck.

Denise 

misstaylor84's picture
misstaylor84
Posts: 18
Joined: Aug 2021

Thank you Denise, yesterday I called the Cancer Treatment Centers of America and things are getting set up for me to go there and get a second opinion. I am not going forward with this hysterectomy unless it truly is my only option. 

BluebirdOne's picture
BluebirdOne
Posts: 450
Joined: Jul 2018

You know how we veterans like to recommend 2nd opinions. :-) Knowing what I know now compared to when I was going through to get dx and treatment, I would get a 2nd opinion even if I liked the doctor, agreed with the findings, as they are not infallible. Some of the NCCN guidlelines are also maddingly ambiguous, I know we all just want to power through our treatment, but stopping to ensure that you are on the right path for you is a life changing moment. You are wise to question their conclusions, as it is your life, your potential child and family. We as females, are especially conditioned not to speak up, not to question authority, having gone through this I now question my docs without hesitation. If you get the confirming dx, then you can rest easy that you did everything you could, even if the news was not what you wanted to hear. We are here for you! 

xxoo

Denise 

alicia2020
Posts: 162
Joined: Sep 2020

I haven't responded to your posts before now because I just couldn't decide what to write. And many of our friends here have written what I might have. But your post to create this thread made me feel like I must write something.

Please, oh, please, don't tell us you would rather be dead! It makes me afraid for you! I know you are horribly angry, confused, and upset right now. None of us has gone through the exact same thing, but many of us can empathize with parts or all of your story. We want you to be OK. 

i spent about 10 years between the ages of 25-35 trying to conceive a child. We did just about everything we could do and to no avail. It was the '80's and IVF was very new, expensive, and only marginally successful. I didn't want to adopt. In those days horror stories of failed adoptions abounded. Legal battles were fought for years and then courts were returning children to their birth mothers. Thank goodness that is NOT how it is today.

I cried at least once a month for all of those 10 years. Every time I started my period, I cried. My situation was very different than yours, in that I did not also have to deal with a cancer diagnosis, but I can completely empathize with the loss of the ability to have a child. To say it is devastating is a gross understatement.

I'm 66 now and am completely blessed to have two wonderful, sweet, loving, and adorable nieces. They are adults and one is a new mother. I love them so much. They are not even my biological nieces, but the nieces of my husband. They bring me great love and joy. No, it's NOT the same as having my own children, but it's very special. I feel very lucky that they are a part of my life.

I hope that you can get some answers, explore some of the options, and find some calm. We are here for you. Please try to be good to yourself. Counties here, in Texas, usually have free services for counseling and/or crisis management. I think you might be able to find some very good help. You can make appointments and see a counselor on a regular basis for therapy at no cost to you. Maybe you can Google for social services in your county? You might be amazed at what you find and the help they can give you. As a graduate student in psychology, I worked for a year in such a place. We were able to help a lot of people. 

My love and prayers go out to you.

❤️, Alicia

 

t519
Posts: 31
Joined: Jun 2021

I wish I had the appropriate words to comfort you during this time. You, and the entire situation you are facing, are on my mind.

misstaylor84's picture
misstaylor84
Posts: 18
Joined: Aug 2021

I am in the process of getting an appointment at the Cancer Treatment Centers of America. I will NOT get a hysterectomy unless it just can't be avoided. There are so many health risks with a hysterectomy like bladder injury, risk of the vaginal cuff tearing, heart and bone issues if my ovaries are also taken and the depression that I'm afraid will never go away. I don't want to never enjoy sex again and I know some women said sex was better after nhysterectomy but I never had any issues that made sex painful so I'd rather leave my cervix but apparently that gets taken away too.

The ladies I talked to yesterday from the Cancer Treatment Center were the first people who actually asked me how I was doing since I was diagnosed. My OBGYN and my GynOnco definitely need to work on their bedside manner when dealing with younger women. I feel like they don't care. They only talk about the standard of care which is meant for an older woman who has gone through menopause and already got to have kids. Maybe the standard of care is what needs to be adjusted because it should be tailored based on each individual person. 

Harmanygroves's picture
Harmanygroves
Posts: 223
Joined: Jun 2021

I have a friend whose ex received treatment with the Arizona branch of that organization, and they were very pleased with his care. I hope your day is going okay, and "well done you" for getting the second opinion arranged. 

All the best,

Deb #2

ConnieSW
Posts: 1574
Joined: Jun 2012

and ask questions about:  Years ago there was a woman (Alexandra) on the ovarian board who elected to keep her cervix.  She is no longer with us but I don't believe that had anything to do with her outcome. I wish I had known that was something that was a possibility. 

yetti's picture
yetti
Posts: 65
Joined: May 2019

Hello Miss Taylor84, I have been a patient at cancer treatment centers of America,since April,2019.They were also a 2nd opinion for me! I was Dx in June 2018 with stage IV B Figo 2 endometrial endocarcinoma, Im 59 years old now !  I've had chemo a laproscopic robotic hysterectomy on Jan 16,2019  I luckily was after menopause when I was Dx!  I completely understand and sympathize on what you are experiencin, I would have been angry and upset too! Which facility of CTCA would you be going too?   I got the 2nd opinion Bc my local onc would not communicate! I went to CTCA  met with their gyn onc they ran their own labs and ct scan and said I was NED after my local onc wanted me to continue more chemo!  I came home, local onc called and asked when I would be in for treatment !   I luv CTCA  I luv traveling to GA every 3 mths love the Gyn onc  Natalie Goldbee  a younger dr, who might be more understanding to your situation! If you have any?s about CTCA  I would be happy to answer them! Sincerely Yetti

 

misstaylor84's picture
misstaylor84
Posts: 18
Joined: Aug 2021

I sent you a msg privately.

misstaylor84's picture
misstaylor84
Posts: 18
Joined: Aug 2021

Kim, the lady that has been talking to me from CTCA called me today and let me know that they were able to reach my insurance from the job I was laid off from and my insurance has been cancelled since July 29! I worked at a staffing agency and they called me on the 29th to let me know I was laid off. They said I would be getting a letter from Cobra with options for keeping my insurance. I never got it. I tried calling HR at the staffing agency's main office and still have not been able to reach a live person. I have left numerous messages. 

I don't see how that is possible because before my first gyn-onco appointment they verified my insurance and that was August. But that means the first 2 appointments, the MRI, won't be covered by insurance so our medical bills will be thousands. And without insurance I can't get an appointment at CTCA. My husband's insurance won't start until November 1, because I think it starts the first of the month following 30 days. I don't think there's any way they can speed that up but he's going to ask.

cmb's picture
cmb
Posts: 728
Joined: Jan 2018

You may still be in the 44-day notification period from your employer/old insurance company. Also, COBRA is always retroactive to the day after your previous coverage ends, if you elect and pay for the coverage.

So keep trying to reach the HR department. Either the employer or the insurance plan administrator are required to send you the COBRA election notice as long as your employer meets the COBRA requirements. See the following:

https://www.cms.gov/CCIIO/Programs-and-Initiatives/Other-Insurance-Protections/cobra_qna

MoeKay
Posts: 349
Joined: Feb 2004

Also, you can find information about COBRA premium assistance under the American Rescue Plan Act of 2021 at https://www.dol.gov/COBRA-subsidy

yetti's picture
yetti
Posts: 65
Joined: May 2019

I replied to your private message!  I hope you can keep your appt with CTCA. I know that they give assistance to patients without insurance, perhaps you can call and explain your insurance situation!   Please get a 2nd opinion !  Sincerely Yetti 

 

misstaylor84's picture
misstaylor84
Posts: 18
Joined: Aug 2021

I still have not been able to reach anyone about insurance where I worked before and the company where my husband just started at has a 60 day waiting period then insurance starts on the 1st after the 60th day, which will be December 1.

Until then I have no insurance. The hysterectomy was scheduled for October 28th, which I'm calling tomorrow and canceling and letting them know if I do go back there I want a different doctor. I am still holding out for an appointment after December 1 at CTCA because I really do think they are my best option. I would rather go through chemo or radiation if it means I can keep my uterus. 

Can they do sentinal node mapping without doing the hysterectomy? Like if I had another D&C, could they not do it then?

At my follow up appointment she didn't even pull up my images and explain anything. Her only reason for wanting to do the hysterectomy is because it's less than 50% in the uterine wall. Studies with megesterol and Provera have shown to treat this even in advanced stages, so why not try it for me? She said I didn't have any risk factors for it spreading to other areas.

cmb's picture
cmb
Posts: 728
Joined: Jan 2018

Before you give up on COBRA, I would suggest calling the insurance company you had while employed. In many cases, the COBRA notice actually comes from the insurance company, not the employer. Perhaps they'll be more responsive. According to my calculations, you still have a couple of days left to be within the COBRA period.

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