Hysterectomy vs Progesterone Therapy

Unknown
Unknown
edited September 2018 in Uterine/Endometrial Cancer #1

Hi Ladies, I met with a gyn onc today to discuss a game plan. He mentioned that I really don’t have any of the check boxes that is common in patients with endometrial cancer, so he is surprised that my biopsy (which was conducted on a “rule anything out” basis as opposed to “suspected problem” basis due to anemia) reported “Complex Atypical Hyperplasia with Prominent Squamous Morular Metaplasia, with Features Bordering on Endometriod Adenoarcenoma, FIGO Grade 1”. Now in addition to feeling scared and sad, I’m angry that there is really no explanation on why my uterus is betraying me.

 

The doctor explained that there were two treatment protocols: conservative treatment with progesterone therapy, and total hysterectomy. The conservative approach is usually for young women who are planning to have children, but if I still wanted to try for children (I’m 45), that would be the route. If not, then protocol is a hysterectomy. While I’d love to have a child, it’s pretty unrealistic, so I went ahead and scheduled my hysterectomy for the week after next. 

 

However, 8 hours later, I’m having second thoughts. While a pregnancy is little more than a fantasy for me, I really do not want a hysterectomy. I’m not perimenopausal yet, my cycles are still regular, except for the fact that they’ve gotten heavier over the years (no abnormal bleeding in between an no lengthy periods). And while I don’t want to have cancer (who does?), I am just not ready to have my lady organs removed. 

 

I am going to call the oncologist tomorrow and I will discuss risks of not having a hysterectomy and opting for progesterone therapy. And if we give it a try for 3 months and it doesn’t work, then I’ll have the hysterectomy. 

 

 

Has anyone chosen the conservative route in treating pre-cancerous, or early grade adenocarcinoma? Has anyone on the this forum achieved remission on progesterone therapy?

 

Thank you!

 

Comments

  • oldbeauty
    oldbeauty Member Posts: 379 Member
    #2
    Very difficult, personal decision.

    Hi NotToday.  You don't say whether any of the suspect tissue was sent out for analysis to determine whether it is estrogen/progesterone positive or negative.  If no analysis was done and if you have a gynecological oncologist telling you watch and wait is an option with progesterone therapy thrown in for good measure, count me skeptical.  I'd urge you to get a second opinion.  Yes, you are young and not yet menopausal, but if you are certain you do not want children, and given how persistent this cancer can be once established, I'd sure want to hear from a second source how there's any reason to think progesterone might help me without a tissue analysis.  I have fought this disease 3 times in 13 years.  My original diagnosis was endometrioid adenocarcinoma Stage IC, Grade 2.  I had a total hysterectomy at age 51 followed by external beam radiation.  My Genzyme analysis was that the cancerous tissue was estrogen and progesterone positive.  I was told I was cured, but recurred in 2012 with a cancerous lymph node and metastasis to my lungs.  I had more radiation and put on high dose progesterone, but was told I likely would be dead in a year.  But I was fortunate, however, and remained in remission for 5 years then recurred again in 2017 with metastais again showing up in the lungs.  So progesterone therapy is no cure and I don't think any literature or doctor will say that it is.  Following 12 rounds of chemo in 2017, I remain "no evidence of disease" at my last CT scan in March 2018. So again, I have been very fortunate.  Mine is an outlier case, though, and no one should think because I've had these results, they are the norm.  They are not.

    You've had/have a number of other health issues and who knows how uterine cancer or radiation or chemotherapy would affect them.  I understand a reluctance to undergo surgery.  I don't impart any nostalgic or identity-giving power to my lady parts.  By choice, I never had children.  But if it is true that the atypical cells are "precancerous" or you do in fact have a low grade "garden variety" cancer, I would not lightly give away a chance to, in fact, achieve a cure of the disease by way of hysterectomy alone.  It is a gift that you caught whatever this is early.  

    I urge you to get a second opinion and dig deeper as to why a hysterectomy is such a daunting prospect.  With this disease, the only chance I know of to actually be cured of this disease is when it is a low-grade cancer type that is localized and has not spread outside the uterus and the woman has undergone a hysterectomy.  These are not easy times.  You have anguish to get through and some difficult weighing of options to get to a decision that is right for you.  Best wishes, Oldbeauty

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #3
    I write this as yesterday was

    I write this as yesterday was 13 years since my journey began.  I was 45 years old and was told I needed a hysterectomy.  They said you don’t have cancer But I did have endometriosis which was causing me pain.  I was regular.  So I had the surgery.  Everything went well and I went for my follow up.  I was told that they found cancer.  I had it in my left ovary my uterus and cervix.  I had to have another surgery for staging about a month later once I healed from original surgery.  they removed my appendix and my omentum at that time   Luckily they didn't find any more cancer.  I was staged at that time at Stage 3a Grade 2.  Like Old Beauty I have had several surgeries since then.   Since they had gotten all cancer I did do preventative treatment of chemo and then brachytherap.  I have had no other treatment since then other than surgery.

    you may want to get a second opinion to help you make up your mind   I made the choice to have preventative treatment because I know how I am because I would be worried about every ache and pain.   Everyone is different and you have to do what is right for you   Gather all information you can.   You have to be your own advocate 

    my best to you as you make this difficult decision

    Kathy

     

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #4
    Get a second opinion

    Please, please get a second opinion. Although I haven’ t heard of success with just progesterone, I have known of women whose pre-hysterectomy cancer diagnosis stage and grade went from “early stage/grade” to late stage/grade diagnosed only after having had a total hysterectomy and lymph node pathological examination.  Until you have your uterus and ovaries removed you won’t actually fully know the extent or degree of cancer or the significance of the abnormal tissue. 

    I have had precancerous colon polyps removed to prevent the polyps from becoming cancerous which in my mind is a precaution. Cancer is hard enough to fight when caught early let alone when it is more advanced. 

    As my “sisters “ have stated -it is a personal decision. 

    I hope you will get a second opinion.  All my best wishes as you work through your decision. 

    Lori

  • MAbound
    MAbound Member Posts: 1,175 Member
    #5
    biopsy vs hysterectomy

    A biopsy takes such a small bit of tissue for diagnosis that it's really pure luck when it actually finds something. It's really a hit or miss procedure for finding uterine cancer. The fact that it did find something for you does not tell the whole picture...only testing after a hysterectomy can do that; the biopsy is really just one of the tests they do, and not the most helpful one, that points to the need for a hysterectomy. 

    I wouldn't rely on progesterone therapy to keep what they think you have at bay because they don't have any way to know if your progesterone receptors are active enough for it to be effective without having enough tissue to test. You could be allowing pre-cancer to develop into a full-blown cancer or miss the opportunity to find out the true stage of disease you have that would influence how you should be treated.

    It's tough facing a decision to have a hysterectomy at your age, but from this side of cancer I can tell you that you'll probably find it a worthwhile trade-off to not have uterine, cervical, or ovarian cancer hanging over your head anymore. It's kind of nice not having to deal with periods, too. ;-) There's a thread somewhere from the past 2 years where we were wondering why hysterectomies weren't done as a means to prevent this cancer after child-bearing years because there is no screening test for it. Any one of us would have had it done in hindsight if we had known what we were in for. You have that opportunity now, so my vote is for having a hysterectomy, even if it's only for prophylactic purposes. 

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #6
    Based on my original, I was

    Based on my original biopsy, I was diagnosed as Stage I Grade 1. After the hysterectomy it was changed to Stage II Grade 3 - total game changer! Please get a second opinion!  This stuff can be so aggressive and once it spreads, it's hard to stop. 

    Love,

    Eldri 

  • Unknown
    Unknown
    edited September 2018 #7
    oldbeauty said:

    Very difficult, personal decision.

    Hi NotToday.  You don't say whether any of the suspect tissue was sent out for analysis to determine whether it is estrogen/progesterone positive or negative.  If no analysis was done and if you have a gynecological oncologist telling you watch and wait is an option with progesterone therapy thrown in for good measure, count me skeptical.  I'd urge you to get a second opinion.  Yes, you are young and not yet menopausal, but if you are certain you do not want children, and given how persistent this cancer can be once established, I'd sure want to hear from a second source how there's any reason to think progesterone might help me without a tissue analysis.  I have fought this disease 3 times in 13 years.  My original diagnosis was endometrioid adenocarcinoma Stage IC, Grade 2.  I had a total hysterectomy at age 51 followed by external beam radiation.  My Genzyme analysis was that the cancerous tissue was estrogen and progesterone positive.  I was told I was cured, but recurred in 2012 with a cancerous lymph node and metastasis to my lungs.  I had more radiation and put on high dose progesterone, but was told I likely would be dead in a year.  But I was fortunate, however, and remained in remission for 5 years then recurred again in 2017 with metastais again showing up in the lungs.  So progesterone therapy is no cure and I don't think any literature or doctor will say that it is.  Following 12 rounds of chemo in 2017, I remain "no evidence of disease" at my last CT scan in March 2018. So again, I have been very fortunate.  Mine is an outlier case, though, and no one should think because I've had these results, they are the norm.  They are not.

    You've had/have a number of other health issues and who knows how uterine cancer or radiation or chemotherapy would affect them.  I understand a reluctance to undergo surgery.  I don't impart any nostalgic or identity-giving power to my lady parts.  By choice, I never had children.  But if it is true that the atypical cells are "precancerous" or you do in fact have a low grade "garden variety" cancer, I would not lightly give away a chance to, in fact, achieve a cure of the disease by way of hysterectomy alone.  It is a gift that you caught whatever this is early.  

    I urge you to get a second opinion and dig deeper as to why a hysterectomy is such a daunting prospect.  With this disease, the only chance I know of to actually be cured of this disease is when it is a low-grade cancer type that is localized and has not spread outside the uterus and the woman has undergone a hysterectomy.  These are not easy times.  You have anguish to get through and some difficult weighing of options to get to a decision that is right for you.  Best wishes, Oldbeauty

    Wise words

    Thank you, oldbeaut, for the wise words. No analysis was done on the biopsy to see if I’m progesterone/estrogen positive/negative. I’ve asked for the genetic testing, CT scans, further tests, but was told that I old have those after the hysterectomy, since insurance won’t cover any of it until I’ve been diagnosed, and the only way to diagnose is through hysterectomy. 

    I callied my onc gyn today to get results of the sonogram and ultrasound yesterday. The nurse said he’d call me back before the end of the day, but that didn’t happen. I am going to see another gynecologist (not onc/gyn) next week to get his opinion. Unfortunately, with my hysterectomy scheduled for 11 days from now, I only have 5 business days in which to get a second opinion. 

    i just don’t have any definitive answers which is causing me immense anxiety. If there was a tumor, then there would be no question in my mind.

    I just don’t want to give up my uterus, cervix, ovaries, etc, if not absolutely necessary. But I guess, deep down, I know it can’t wait and the likelihood of the final Dx after hysterectomy will probably much worse than pre-cancer or grade 1, as per biopsy. Just wish I had more answers.

     

  • Unknown
    Unknown
    edited September 2018 #8
    Kaleena said:

    I write this as yesterday was

    I write this as yesterday was 13 years since my journey began.  I was 45 years old and was told I needed a hysterectomy.  They said you don’t have cancer But I did have endometriosis which was causing me pain.  I was regular.  So I had the surgery.  Everything went well and I went for my follow up.  I was told that they found cancer.  I had it in my left ovary my uterus and cervix.  I had to have another surgery for staging about a month later once I healed from original surgery.  they removed my appendix and my omentum at that time   Luckily they didn't find any more cancer.  I was staged at that time at Stage 3a Grade 2.  Like Old Beauty I have had several surgeries since then.   Since they had gotten all cancer I did do preventative treatment of chemo and then brachytherap.  I have had no other treatment since then other than surgery.

    you may want to get a second opinion to help you make up your mind   I made the choice to have preventative treatment because I know how I am because I would be worried about every ache and pain.   Everyone is different and you have to do what is right for you   Gather all information you can.   You have to be your own advocate 

    my best to you as you make this difficult decision

    Kathy

     

    Scary!

    Kathy, your story scares me to death! I am so glad you have taken the measures you have so that you can be where you are today. I know I have to have the hysterectomy. It’s all happened too fast for me to process. I’m in full grief over the finality of my womanhood, but I definitely don’t want to be grieving a late stage cancer diagnosis that a hysterectomy would’ve prevented. 

    Thank you Kathy. 

  • Unknown
    Unknown
    edited September 2018 #9
    Northwoodsgirl said:

    Get a second opinion

    Please, please get a second opinion. Although I haven’ t heard of success with just progesterone, I have known of women whose pre-hysterectomy cancer diagnosis stage and grade went from “early stage/grade” to late stage/grade diagnosed only after having had a total hysterectomy and lymph node pathological examination.  Until you have your uterus and ovaries removed you won’t actually fully know the extent or degree of cancer or the significance of the abnormal tissue. 

    I have had precancerous colon polyps removed to prevent the polyps from becoming cancerous which in my mind is a precaution. Cancer is hard enough to fight when caught early let alone when it is more advanced. 

    As my “sisters “ have stated -it is a personal decision. 

    I hope you will get a second opinion.  All my best wishes as you work through your decision. 

    Lori

    Thank you

    Thank you Lori. I don’t want to be one of those stories. Onward and forward. 

  • Unknown
    Unknown
    #10
    MAbound said:

    biopsy vs hysterectomy

    A biopsy takes such a small bit of tissue for diagnosis that it's really pure luck when it actually finds something. It's really a hit or miss procedure for finding uterine cancer. The fact that it did find something for you does not tell the whole picture...only testing after a hysterectomy can do that; the biopsy is really just one of the tests they do, and not the most helpful one, that points to the need for a hysterectomy. 

    I wouldn't rely on progesterone therapy to keep what they think you have at bay because they don't have any way to know if your progesterone receptors are active enough for it to be effective without having enough tissue to test. You could be allowing pre-cancer to develop into a full-blown cancer or miss the opportunity to find out the true stage of disease you have that would influence how you should be treated.

    It's tough facing a decision to have a hysterectomy at your age, but from this side of cancer I can tell you that you'll probably find it a worthwhile trade-off to not have uterine, cervical, or ovarian cancer hanging over your head anymore. It's kind of nice not having to deal with periods, too. ;-) There's a thread somewhere from the past 2 years where we were wondering why hysterectomies weren't done as a means to prevent this cancer after child-bearing years because there is no screening test for it. Any one of us would have had it done in hindsight if we had known what we were in for. You have that opportunity now, so my vote is for having a hysterectomy, even if it's only for prophylactic purposes. 

    No more paying pink tax

    I guess I won’t have to pay any more “pink tax” buying tampons/pads, etc.!  Not having periods will be great, but the surgical onset of menopause is going to be a bear. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,515 Member
    #11
    NotToday, if you get a second

    NotToday, if you get a second opinion, I would recommend getting it from a gynecologic oncologist, not just a gyn.  (Honestly I would hope a gyn wouldn't be arrogant enough to think they should be dealing with it, but I have met women who have, and they regret it)  I didn't know gyn oncs existed before cancer, but I would only deal with (or recommend specialists to friends) going forward.  

  • Armywife
    Armywife Member Posts: 451 Member
    #12
    Hugs

    Two things - I fully agree that your second opinion should be with a gyn/onc if possible.  I absolutely don't want to scare you either because I fully remember just last year feeling like you are feeling - my biopsy indicated Stage I Grade 1.  Post surgery, I am Stage IVB Grade 2.  

    That aside, your statement about being "in full grief over the finality of your womanhood" breaks my heart.  Dear girl, you will always, always be a woman.  I have moments of serious grief over losing the parts as well - and I was 57 when I had surgery - it would have been laughable to think I needed those parts.  So I know how you feel, but I encourage you to know that your invisible parts don't define you.  Grieve, then dry your tears and move forward and LIVE.

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