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Thread: Should I have the surgeon take it all? Or not?

  1. #1
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    Should I have the surgeon take it all? Or not?

    After a CT scan last Monday, my primary care doctor told me i had a large mass (22 cm) attached to an ovary and that there was a good chance it was cancer since the mass had solid areas as well as fluid-filled areas. My CA125 was 97.

    After four days of almost paralyzing fear, i met Thursday with a gynecologist/oncologist/surgeon, whom I like and trust. He told me that in his opinion, there is an 85% chance that it is not cancer. He said it's just too big and is growing too fast to be cancer. I hope he's right.

    But regardless of whether it is or isn't cancer, it has to come out. Surgery is April 4. The surgeon is urging me to let him take both ovaries (only one is involved supposedly) and my uterus so that i'm not dealing with this again in 10 years.

    I am 53 years old and still peri-menopausal so i am almost done with needing all my girlie bits. But i'm worried -- mostly about the possibility of a hernia developing (i'm very active) but also about my libido. And, too, that a total hysterectomy will increase the healing time. The surgeon said it is totally my choice but told me that in his opinion i should let him take it all.

    The surgeon already has to open me up from just below my bra to my pubic bone. That is one big incision and i'm really really scared about that, too.

    I'd really love your opinions on what i should do. If they stage the mass and it is cancer, i'd definitely tell him to take it all. But if it's benign, i just don't know.

    Help, please!

  2. #2
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    Personally if it were me, I would say take it all out! If you are peri-menopausal you're soon to get that way anyway. I would feel a whole lot better knowing that all those hard to detect cancers are no longer a possibility. I would say that for for the heal time, your going to be out of commission for six weeks anyway if they open you up, you just might have to be a little more careful on lifting things. Good luck with it and hoping the best for you on the cancer outcome.
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  3. #3
    My gut feeling is that since you're having the big incision anyway, removing the uterus and other ovary wouldn't add much to the recovery time, but I don't really know. Either way, you're going to have to take time to let things heal cleanly. It seems to me the hernia risk is mostly from the big exterior incision. For what it's worth, I never popped a hernia from my big incision. It healed very well. I refrained from vigorous exercise for four months as instructed, but then I took weight training classes that included lots of core exercises for four months and did fine. Then they did a laparoscopy, and it was one of the tiny laparoscopic incisions that herniated. It's a very small hernia, though, and not causing me trouble.

    I felt pretty good after the big surgery, and felt like I could do most anything after six weeks. They say sticking to the restrictions the full four months helps to prevent internal scar tissue from forming, so I'm glad I stuck to it, even though it was boring.

    Did the gyn/onc or your other doctor talk to you about using hormone replacement to deal with the menopausal symptoms? And what are your feelings about doing that? (Some women want it, others hate the idea.) When I had my surgery we thought the tumor on my ovary would be benign, and I asked that they remove only that ovary and tube. I was in my early 60s at the time and had already gone through menopause. But it turned out the tumor was cancerous and had spread, and I'd agreed if that was the case everything should go. I used hormone replacement for two years afterwards. My doctors weren't that keen on it, but I was able to increase my bone density a lot in those two years, and I liked being on the hormones.

    If I were facing the decision again, now that I know more about ovarian cancer, I would have had everything taken out even if the tumor had been benign. But I didn't have to do it while my ovaries were still trying to function, so I didn't experience any surgical menopause. One consideration is that it's a big surgery and not something you want to go through twice.

    Best of luck with the surgery. I hope it's benign!
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking. 2010 - laparoscopy showed inoperable recurrence, so started chemo. Frontline chemo - carboplatin and cyclophosphamide, six cycles; Avastin - ten cycles; Weekly Topotecan - 4 cycles. Spring 2012 developed pleural nodules. Topotecan plus Avstin - 1year. April, 2014, had surgery to remove Aspergillus infection from right lung.

  4. #4
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    That helps, thank you.

    So, if you would tell me how you dealt with such a large incision. I think my surgeon is being really really optimistic when he tells me i can go back to work in 2-3 weeks if i want. That seems way to soon.

    He did give me permission to travel to Mexico after 4 weeks of recup at home.

    Was it your experience that youbwould have been able to do that.

    I understand the no vigorous exercise for 4 months but i am hoping that doesn't include walking -- i walk a lot.

    Thanks again, and i welcome more of your or anybody's opinions!!

    Pat

  5. #5
    Hi Pat, I'm sorry -- my incision was not as long as yours. Mine stopped above my belly button and didn't go all the way up to my breast bone. I hope someone here will be able to tell you their experience with the larger one. But for what it's worth, I was feeling good a month later and went for two weeks at the beach about that time. Do you do some sort of office work? I would guess going back to an office job in 2-3 weeks is within reason, but it assumes you don't have any setbacks. It would be nice to have a little more than that, if only to have a little pleasant time at home. I still had a lot of fatigue 6 weeks later, but I'd been very sick before diagnosis and had two other surgeries two months before the ovarian surgery, so I was sort of a train wreck to start with. They told me to walk a great deal, starting the morning after the surgery, and there was absolutely no restriction on that. The most bothersome restriction was lifting. They said not to lift anything heavier than a gallon of milk, and I can't recall how long I was supposed to stick to that restriction. I know I broke the rule when I packed my stuff up to go to the beach, and had discomfort because of it. Then the doctor told me about internal adhesions and I behaved myself after that. You're also not supposed to push heavy things (vacuuming) and for a while you can't bend to pick things up off the floor (get one of those long-handled pick-up gadgets).

    After the first 24 hours, my biggest discomfort was from the staples. They came out about 10 days after the surgery. Having staples in your belly is like hugging a porcupine! I was in the hospital four nights and about two days later I felt I didn't need the narcotic pain relievers -- tylenol and advil were enough. After a month the external incision was totally healed up.

    Someone online said she had trouble climbing stairs after surgery because she had a big incision. With mine, I had no trouble with stairs. I remember I had trouble getting into a friend's Jeep -- couldn't lift my leg high enough to get in the seat. And the first few hikes I took I didin't have the muscles to scramble up steep slopes.

    The nurses will teach you how to roll out of bed sideways to avoid doing a situp, and I did that for a long time -- at first to be cautious and then because my abdominal muscles turned to mush! But once they gave me the okay to exercise the weight training class brought my muscles back quickly.

    So anyway -- back to work in 2-3 weeks sounds a little optimistic to me, depending on what work involves. I could have done Mexico in four weeks if it involved a lot of lying on the beach and taking a nap before dinner. But I'm quite a lazy person to begin with, and older than you. Can you play these things by ear, or do you have to decide right now?
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking. 2010 - laparoscopy showed inoperable recurrence, so started chemo. Frontline chemo - carboplatin and cyclophosphamide, six cycles; Avastin - ten cycles; Weekly Topotecan - 4 cycles. Spring 2012 developed pleural nodules. Topotecan plus Avstin - 1year. April, 2014, had surgery to remove Aspergillus infection from right lung.

  6. #6
    Administrator Top User Didee's Avatar
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    Hi. I too would be inclined to have it all go.
    I had a hysterectomy (vertical incision from pubis to above belly button) non cancer related in 2007. I was 50 then.
    They took one ovary..said the other would be fine but nope, plunged into a surgical menopause and on HRT.
    Libido wise I was fine till chemo for lymphoma in 2010 finished it off.

    If you decide to then yes you will be told how to log roll out of bed and encouraged to walk almost straight away. Those who walk and stand erect despite the pain of doing that seem to do so much better than those who stay hunched over in bed.

    Back to work in two weeks seems unrealistic to me too.
    A site I feel was such a help for me was

    http://www.hystersisters.com/

    Oh mannnnn, what a help that was.

    Good luck with whatever you decide.
    We are here for you.
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    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

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  7. #7
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    You all have been a treasure, truly. I know our cases aren't exactly similar but certainly more so than friends who have no experience with this and no answers.

    I'm still pretty scared about this seemingly huge incision but i want to get this thing -- whatever it is, out of me. It feels as though it's doubled in size in the last 6 weeks. I'm tempted to ask the surgeon take a picture of it after it's out but fear it will be too gross.

    Did anybody else actually see what the doc took out?

  8. #8
    Administrator Top User Didee's Avatar
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    No, I didn't but I would have liked to. My surgeon told me it was a bit of a wrestle to get my uterus out as I was not even peri menopausal. She made an executive decision to to it with the vertical incision not a bikini line one as it would be easier on me healing wise and she knew I didn't give a toss about a scar.

    The bloke that did my bone marrow biopsy showed me the instruments he used when I asked him. Miniature corkscrew thingys that looked the same as my hubby has in the shed, lol.
    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011.
    Scan Feb 2012 .still in remission.
    Still NED Nov 2012. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

    CancerForums User Policy

    http://www.cancerforums.net/threads/...picture-policy

    Out of all the things I have lost, I miss my mind the most.

  9. #9
    My gyn/onc showed me pictures of my liver after my laparoscopy. It's got tumor implants all over it. Very impressive -- I was questioning whether chemo was necessary. That settled the question!
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking. 2010 - laparoscopy showed inoperable recurrence, so started chemo. Frontline chemo - carboplatin and cyclophosphamide, six cycles; Avastin - ten cycles; Weekly Topotecan - 4 cycles. Spring 2012 developed pleural nodules. Topotecan plus Avstin - 1year. April, 2014, had surgery to remove Aspergillus infection from right lung.

  10. #10
    Senior User Midnight_Butterfly's Avatar
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    My comment comes from someone who has had one ovary removed due to O.C (at 27 yrs old). I was asked permission by the surgeon that if he felt it necessary to remove everything, could he? (I Had not had a child at this stage.) I told him to do what he needs to do. In November, I gave birth to a baby girl. I still have my uterus, left ovary and tube. Now, I'm having some weird issues and as before when something strange occurred, I got 'paranoid' about 'what if' it's cancer? What if it's my ovary?

    Shortly after I gave birth, an obstetrician asked if I Had considered having the other removed and I had said yes, but had decided no. If it's not broke, don't fix it right? HRT and the complications that can arise from that, not to mention expense seemed to be a bit of a no-brainer. But now, I sit wondering what's going on inside me (waiting to see someone) and wonder if I should have had it all taken care of when I was back in my home country where they would have done it for nothing.

    My tumor grew rapidly and there was no great cause for concern that it was cancer, but for me, it was (stage 1a all contained in the tumor). So, the only thing I can really say is think of your peace of mind later (if you choose to keep some of your 'bits'). It's a very personal decision and I wish you the best. There is no wrong decision. It's your body.

    At this stage, I am pleased I still have my remaining factory parts because it means there's only really one thing that can go wrong and the likelihood of a recurrence 7 years later is about 10% if not smaller.

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    An update: It was ovarian cancer, clear-cell carcinoma. Dang-it! Surgeon drained 3 liters of fluid from the cyst before he removed the 10-lb. mass, then did a total hysterectomy. He did a "wash" (whatever that is) and biopsied 13 lymph nodes. All came back cancer-free, thus leading to a 1A staging. I guess if you have to have cancer, that's about the best you can do.

    Surgeon says I will need an 18-week course of chemo because it was the clear-cell type and there is a 40% chance of recurrence without it. I still have lots of questions for my doc and meet him for the first post-op appointment on 4/25.

    I'm not quite sure I understand why, if there is no cancer left, I need to do chemo. I guess I've never thought of it as a preventative measure, but I certainly welcome others' thoughts.

    I'm healing pretty well from the surgery, I think. Doing too much some days and paying for it the next day, but that's just in my nature. Getting great support (almost too much sometimes) from friends and coworkers.

    Thought I'd let you all know what's up.

  12. #12
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    Quote Originally Posted by PatP2 View Post
    An update: It was ovarian cancer, clear-cell carcinoma. Dang-it! Surgeon drained 3 liters of fluid from the cyst before he removed the 10-lb. mass, then did a total hysterectomy. He did a "wash" (whatever that is) and biopsied 13 lymph nodes. All came back cancer-free, thus leading to a 1A staging. I guess if you have to have cancer, that's about the best you can do.

    Surgeon says I will need an 18-week course of chemo because it was the clear-cell type and there is a 40% chance of recurrence without it. I still have lots of questions for my doc and meet him for the first post-op appointment on 4/25.

    I'm not quite sure I understand why, if there is no cancer left, I need to do chemo. I guess I've never thought of it as a preventative measure, but I certainly welcome others' thoughts.

    I'm healing pretty well from the surgery, I think. Doing too much some days and paying for it the next day, but that's just in my nature. Getting great support (almost too much sometimes) from friends and coworkers.

    Thought I'd let you all know what's up.
    Hi Pat. I am new to this forum, I don't have much experience with oc but I read your thread and I'm so happy they cought it so early! I'm so terrified of what they might find after my laparascopy, but that's life, have to roll with the punches I guess. Hugs! - Diana

  13. #13
    PatP2, I'm so sorry to hear about the cancer diagnosis but so very happy to hear it's Stage 1A! That's excellent news! Catching it so early is fantastic.

    Each cancer tumor starts out as a single cell, and you can't see or remove individual cells. So the idea of following up with chemo is to kill off anything that slipped away from the original tumor.

    How are you feeling?
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking. 2010 - laparoscopy showed inoperable recurrence, so started chemo. Frontline chemo - carboplatin and cyclophosphamide, six cycles; Avastin - ten cycles; Weekly Topotecan - 4 cycles. Spring 2012 developed pleural nodules. Topotecan plus Avstin - 1year. April, 2014, had surgery to remove Aspergillus infection from right lung.

  14. #14
    Senior User Midnight_Butterfly's Avatar
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    Quote Originally Posted by PatP2 View Post
    An update: It was ovarian cancer, clear-cell carcinoma. Dang-it! Surgeon drained 3 liters of fluid from the cyst before he removed the 10-lb. mass, then did a total hysterectomy. He did a "wash" (whatever that is) and biopsied 13 lymph nodes. All came back cancer-free, thus leading to a 1A staging. I guess if you have to have cancer, that's about the best you can do.

    Surgeon says I will need an 18-week course of chemo because it was the clear-cell type and there is a 40% chance of recurrence without it. I still have lots of questions for my doc and meet him for the first post-op appointment on 4/25.

    I'm not quite sure I understand why, if there is no cancer left, I need to do chemo. I guess I've never thought of it as a preventative measure, but I certainly welcome others' thoughts.

    I'm healing pretty well from the surgery, I think. Doing too much some days and paying for it the next day, but that's just in my nature. Getting great support (almost too much sometimes) from friends and coworkers.

    Thought I'd let you all know what's up.
    I hope your treatment isn't knocking you around too much. I'm glad that while it was cancer, it was very early stages. You have a good attitude. I hope you're much more mended now.

 
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