Hysterectomy @ 37 & terrified

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I Ended up in hospital for 14 days last month and had an my left ovary removed, told two

Weeks ago that in actual fact was stage 1 ovarian cancer.   Have been told numerous times how lucky i am ( Lucky is not how I'm feeling 😞wink Although I do understand it's meaning  And as precaution now is best to have full hysterectomy- this is scheduled for the 1 st week in Jan .... I'm truly devastated & uncontrollably emotional at the whole situation. I'm

37 and have twins age 10 

I'm Petrified beyond belief, I've always been very optimistic person I feel like my world has now been turned on its head

I've had no pain / no problems with periods / no endometriosis I've Been for and healthy up to this point ... 

I had trouble goin to the loo for just over a week last month  doc sent me for scan and I'm

Now here ..reading desperately scary forums on what to expect when I come out from surgery. 

I'd love any advice on what to expect and really should I Be feeling life as I know and loved not is now over. 

Thanks for reading xx 

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  • Posted

    I am so sorry that you're going through this!  It is so terrible.  I completely understand.  I am presently under treatment for recurring uterine cancer.  I had a hysterectomy last year and was staged at 1a, nothing further necessary.  But I was diagnosed with a reoccurrence this August.  My treatment Is going well right now, it's a long road ahead but my doctor has a plan.  It's very flexible and I am hopeful.  

    I'm just letting you know the situation I'm in.  I can't tell you what to do, but I can tell you what I'm trying to do each day.  The nights are worse for me.  I am trying to put my trust in God, daily.  I know that I have to trust my doctors, but I have to learn as much as I can about my treatment, so I can assist in my own care. Then, I have to trust that all will be well. Sometimes, I do panic, but I have the support of those who love me and who are praying for me.

    Don't try to soldier on and keep it all to yourself.  That's because you'll need all the support and prayer you can get.  It means so much and the knowledge that others are praying for you and thinking of you buoys you up like nothing else.

    I am hoping for the best for you and praying for you, too.  xx    

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    • Posted

      Thank you so much Lynda20916 

      And I'm glad to hear your treatment is going well & long may it continue. 

      I feel like I've been hit with a freight train .. so many tests I've had surgery for left ovary  etc then so much information & now feeling like I'm cramming for an exam in a foreign language that I've not even been given a hint as to what it is . The pysical surgerys 

      I can cope with but it's the menopause I'm so young and healthy it  just seems I've won the worst lotto ever. 

      Thank you so much for your kind words and prayers. 

      And you will be in my thoughts and prayers 

      Xx 

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    • Posted

      Del,

      You are so welcome!  One thing I will tell you is to ignore people who tell you you need to remain positive "no matter what." It's a dumb standard for someone who is going through cancer--and don't feel "less than" when people want to tell you about or compare you to someone who "beat it."

      You will be doing the best you can do, whether you're showing up for treatment feeling like crap (assuming you have subsequent chemo) or telling your doctor," I need some time to rest, " or if one day all you are capable of is crying.  Each person goes through this hell in their own way.  One of my friends asked me (after finding out) "Can you still work out? Does it help?"  They meant well.  Some people can do it, others find it impossible.

      Menopause will be challenging because you're so young....but you will find ways to deal with it!  And, hopefully, find a little love and joy each day.

      The ladies on this site are fabulous!  They will do all they can to offer wisdom, comfort and support.  

      Please let us know how you get on! xx     

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    • Posted

      Hi Del,

      It's good to hear from you.  How are you doing?  

      I finished chemo (6 treatments) a week ago last Thursday.  I'm to have a CT scan to assess how well the chemo reduced the size of my tumor and lymph nodes in about 10 days. My doctor will consult with the radiologist and a surgeon after that, and we'll make a treatment decision--radiation or surgery followed by radiation. I was very scared to have my 6th chemo, because each time, my reaction to the chemo was different.  But my 6th chemo went alright, and I feel stronger, though it's only been a week and 2 days. There are times I'm stressed and fearful and times when I feel more optimistic.  Still trying to take it 1 day at a time.

      Please let me know how you're getting on.  xx 

       

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    • Posted

      Hi Lynda20916 

      Lovely to hear from U. Xx 

       the last two days I've been ok ( as In im not literally falling apart by times) post op was emotional draining. But today I was out of the house and it felt a little normal. 

      The op (hysterectomy) went well 

      As per the doc and they advised on a round of chemo in about 8 2weeks. That's a whole new thing to worry about but I just can't go there just yet. 

      Please god the news will be optimistic in 10 days, keep me posted. 

      Xxx 

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    • Posted

      I'm glad that you got out of the house.  Each little thing you can do to help yourself brings good results, I think.  Right now, just try to take it day by day, hour by hour, or even minute by minute.  Please feel free to send me a private message if you want.  I'll help in any way I can.  xx 

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    • Posted

      Absolutely Lynda and it is a short as minute by minute sometimes 

      Thank you so much for ur kind and warm words. I will talk to u soon

      I hope ur in good form this eve 

      Xx 

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    • Posted

      I'm trying to understand how uterine cancer can recur after a total hysterectomy. Isn't your uterus gone? I am facing this myself. I know what you all are going through.

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    • Posted

      Even with a hysterectomy, microscopic uterine cancer cells can "migrate" out of the surgical site to other parts of the body. In come cases, they've already done that before the surgery and in other cases it happens afterwards.    

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  • Posted

    I am so sorry that you are going through this. I am 34 and had same symptoms so went to GP on 27th December, I have since had blood tests including CA 125 that came back abnormal and a TV ultra sound scan on Thursday and am now waiting for an urgent gynaecology appointment to discuss my treatment.

    I am like you horrified at the thought of it all as I have scan result and know it is not good reading. I have an 8 year old daughter so I completely understand your situation.

    I will pray for you, and please keep posting to let us know ow how you are doing.

    Good luck, take care xx

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    • Posted

      Nicola, 

      Sorry I've been out of touch for a wee while. 

      I'm doing ok (today) it's been a rough couple of weeks but today I'm 8 days since hysterectomy 

      .. I can't believe the rollercoaster I've been on in the last couple of weeks. 

      I can tell ya I'm still feeling v sorry for myself by times. 

      I'm still v emotional about the whole saga.😞 

      Physically I've healed quite well 

      I'm up and about doing little things but still taking plenty of rest. 

      How are u ... have u had your apt ? 

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    • Posted

      Lynda

      How are you darling - how is your treatment ? 

      I've been ok,

      I've healed really well after the hysterectomy & I'm up and about and doing wee bits - nothing to major to be honest 

      I'm

      Due back in tomorrow, I'm

      Sick to my tummy. I'm terrified, 

      That's they have found more ( although it's unlikely.. however 😔wink 

      and I've to meet oncology dept as well tomorrow for the next step in Treatment I've been doing so well no out burst of tears etc but today I feel kinda low and worried. 

      I've had no menopausal symptoms just yet that's been a wee wonder. As any of my research said it would happen before I led hospital. 

      Please let me know how you have been xx 

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    • Posted

      Hi Del

      I was brought into hospital by the ambulance on Friday night with agonising pain, they had even managed to control the pain but in the meantime my results have all come back and I have been told today that I need a total abdominal hysterectomy and they are doing It on Thursday.

      Worried isn't the word xx

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    • Posted

      Hi, Del.  So sorry I didn't get back to you!  I didn't get the notification of your message until just this moment.  Please let me know how your appointment went, and what your treatment will be.  

      I am having surgery on the 13th.  Because the general surgeon will have to use surgical mesh to reinforce the muscles in my abdomen, I can't have the radiation there that my oncologist planned.  I may be able to have radiation where the lymph nodes in my groin will be removed.  But, as of now, surgery is enough to face.  neutral

      Please let me know how you're getting on!  xx  

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    • Posted

      Oh Nicola ah I'm so sorry .. 

      it's a lot to take in & allot to give up and allot to think about  ... like what will come of it etc ( sadly no one can answer that until it's all done ) But For now all u have to is get yourself ready for op ... the rest will follow in time. 

      u will need pre made dinners etc & if u have offers of help take it all

      From school runs to shopping ( nothing lasts forever so make the best of it )

       if they are doing lapo

      Hopefully you be home with four days maybe. 

      I know it's an awful desperate time and the tears are probably plenty- let them fall. Sometimes we actually feel better. & we'll take that when we can. 

      There's light my lovely 

      Only this morning I was out drivin and shopping- I can tell ya 

      Only three weeks ago I thought I would never be the case but deep breaths help. 

      I hope ur ok today I've tried to give ya practical information up top but please if u have any questions please just ask 

      If u need to vent please feel free..  I'll listen . I know it's lonely ( if that's the right term but don't feel alone ) xxxx 

      Keep in touch xx 

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    • Posted

      Oh Lynda darling. I was worried about ya,

      Then I thought I'd either replied wrong or deleted it lol anything is possible these days. 

      Last thurs they said anything that was taken ( hysterectomy) was tested and it was all ok the plan is now to go forward with chemo as precaution. I can do chemo that I shouldn't loose my hair ( I'm not vain but loosing it would meant having to tell my kids aged 10.that would have been harder than any op I've done ) 

      So start in two weeks maybe and we'll go from there 

      Oh darling sounds like you've been really going through it since we spoke. 

      These ops are enough ... and awful But all the same time necessary although it doesn't make it any easier. 

      Day by day is all we can do. 

      But kind to u do something nice .. food / treat / anything u feel is a treat..

      I'm thinking and praying 

      All will go well, keep in touch xx 

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    • Posted

      Hi, Del!

      So god to hear from you.  I am glad the biopsy results after your surgery were good.  It's a good idea to have chemo just in case.  My uterine cancer was staged at 1a. In the US, the guidelines state that the best thing to do is nothing.  No chemo afterwards.  So a year later, the microscopic cancer cells that remained caused the tumor in my abdomen and made their way to my lymph nodes.  

      I did chemo first, hoping that the tumor would shrink and the lymph nodes as well.  Unfortunately, they didn't shrink as much as my MD thought they would.  So having surgery on 2/13.  My husband has caught a cold.  So I'm here in the house, taking every precaution I can not to get it.  

      I am thinking of you, and praying for you, too.  Thanks for your thoughts and prayers!  I sure need them! Keep in touch!  Lynda

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    • Posted

      Hi Lynda 

      I didn't realise you are based in the US ... I take it for granted anyone I write to is a neighbour lol I'm based in Dublin Ireland. 

      We've got plenty of cold right now and a little snow this am bits that's a usual January here. 

      Yep it was v positive last week 

      But these appointments  weather good bad or indifferent are soul destroying... from the nights before To after. 😔 I get so worked up 

      Yep I've been reading up so much and it would see that they now take these precautions .. 1st hysterectomy and now chemo 

      I'm telling u the only thing I complained about 14 weeks ago was the traffic and weather I seen non of this coming. ( I'm still feeling sorry for myself, little down today and yesterday- little few tears too- but we're allowed )

      Oh dear and a sick hubby ( man flu) is no fun for anyone lol 

      Joking aside U nearly forget that real life goes on. Plenty of antiseptic wipes .. counters / door handles on top of everything the last thing u need is a dose of flu. 

      I hope your in good spirits xx 

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    • Posted

      Thanks for responding!  I understand so well the soul killing appointments.  It used to be that every time I went for an appointment I felt as if I was skydiving for the first time.  You never know what's going to happen when you land.

      I think that being sad and mourning is part of the package.  You need to feel your feelings, so that after you do you can find a way to pick up and move on, as you said. One day at a time, one minute at a time, sometimes a few seconds at a time.  I'm doing better at that, as well as at counting my blessings.  

      I have a good support system, including this forum!  This is a fantastic site.  In my opinion, there's none better!  

      My best to you.  You will be in my prayers! xx 

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    • Posted

      Oh they are desperate they really are .. even just to see the nurse .. I feel sick at the thought of walking into the hospital. It's so unnerving..

      Absolutely some days I feel strong and able others I really find it hard to get off the side of the bed. Such a rollercoaster and it's so tiring it really is. 

      I find myself praying at the oddest times now  ... standing in que / folding clothes. I think of us all and what we have been through. I find it takes away some of the anger and sadness. 

      I hope ur having a good day 

      In my thoughts & prayers as always xxx 

      Chat soon 

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    • Posted

      Thanks for getting back to me.  Had an appointment with the surgeon this morning.  When it was finished, I was so upset, I asked my husband to take me to see the oncologist.  After I talked with the triage nurse there, I got to see the oncologist for about 15 minutes--without an appointment. I had to confirm where we were going with my treatment and why--speaking with the surgeon confused me so much. I felt better afterwards, but was completely wrung out.

      I pray all the time, too.  I think of all the women, on this site and in the world and of all the joy and suffering women have and endure.  Because of it, we're the stronger sex, I think.  smile

      Bless you! xxx

       

        

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    • Posted

      Oh Lynda I'm so sorry I hadn't realised u were back in today, 

      As I type I'm actually sitting st oncology (with full on sick tummy and shaky hands)

      Like that to its for a chat and to sort start date. 

      I could be anywhere but here right now. 

      Yep it takes so much brain power to to try listen to what they are saying - and trying to read between the lines 

      Did you's come up with a plan .. 

      I hope u got some rest since u last wrote xxx 

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    • Posted

      Please let me know how your appointment went!  You can private message me, and I can support you as you go through chemo, which is different for everyone.  

      The plan formulated with the oncologist was chemo for 6 treatments, one every 3 weeks to reduce the size of the cancer, surgery, then radiation.  Where the tumor in my abdomen is makes the surgery complicated--it's in the muscle wall.  This was the 2nd appointment with the surgeon, who looked at the ct scan of the tumor and gave us his thoughts about how he could perform the surgery and everything--I mean everything--that could go wrong, including that I could be left with an open wound for a while.  

      After all this he told my husband and I that what he was doing was essentially palliative.  That meant to me that the surgery and proposed radiation were only being done to buy me some time, but that  I was going to pass away from this anyway.  Well, why did I have chemo?  Why was I having this surgery?  Why was radiation planned for afterwards?

      I maintained my composure long enough to end the appointment, then headed out the door to the parking lot.  My husband didn't understand what palliative meant.  That's why I had to go to the oncologist.  The surgeon told us that he was there to do the surgery, and that we should go to the doctor about cancer questions, but not before he completely freaked me out!  

      I got some rest last night, but am struggling with doubt and despair this morning.  Talking to God, lots.

      As I said, please let me know how you're doing and I'll support you in any way I can. xxx  

          

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