Hysterectomy after all

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

oldbeauty said:

Heartful sympathy, missytaylor84...

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

Old Beauty </b>
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. 

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

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. 

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

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

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

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 

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.