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    • shiningfaery
    • By shiningfaery 17th Jul 17, 10:09 PM
    • 215Posts
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    shiningfaery
    Out of my depth, don't know where to turn
    • #1
    • 17th Jul 17, 10:09 PM
    Out of my depth, don't know where to turn 17th Jul 17 at 10:09 PM
    Straight off I will say I am a worrier always have been.

    My mum has had a some issues with her menstrual cycle which has been cause for concern, she's had tests and scans done. Today we went to gynecologist for discussion and the senior registrar kept saying cancer.

    By end of the conversation she left me with the impression that they are expecting a diagnosis of ovarian cancer, she has thickening of the womb after menopause and a cyst of 19cm diameter approx.

    Their proposal is a full hysterectomy including ovaries tubes and cervix. We won't know till then 100% if it is or isn't. She is 57, and after looking online at ovarian cancer I am not left with a whole lot of optimism regarding survival rates.....has anyone got first hand experience here that can shed some wisdom, help or anything that will help me right now..........
Page 1
    • Jojo the Tightfisted
    • By Jojo the Tightfisted 17th Jul 17, 10:46 PM
    • 22,583 Posts
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    Jojo the Tightfisted
    • #2
    • 17th Jul 17, 10:46 PM
    • #2
    • 17th Jul 17, 10:46 PM
    I'm sorry you are going through this.

    From what you've said, it could just as easily be endometrial cancer + a 'normal' cyst though, which has a completely different path and prognosis - or any number of other things, so I think what is best is for you to get in touch with the Oncology Nurse in Gynae (your Mum's Consultant's Secretary will be able to put you in contact). They will be able to give you and your Mum more time to explain things, as it's so very easy for the words that come after 'cancer' to blur. I used to have calls like that when I worked in Gynae, and that was exactly what I'd do. If there wasn't a specific number for a secretary, asking for the Oncology Nurse in Gynaecology would be enough information for somebody on the main switchboard to put you through to the right person as well.

    It sounds as though she's already being very well looked after, in that she's had tests and scans - not everybody is fortunate enough to have a GP that recognises the symptoms - and really, it's not until surgery and tests upon the tissue they have removed that they would be able to give you an accurate picture of what they have found.


    But you definitely need support now. What you're feeling is completely normal - it is terrifying for patient and family.

    Don't be afraid to ask for help now. You need it to support your Mum the best that you can, she needs it to deal with what is to come, whatever it is.

    And, moreover, I think you need a hug. If I were there, you'd have one.

    Leave your laptop alone unless it's looking up the Consultant's Secretary's extension number to call in the morning. Please.
    I could dream to wide extremes, I could do or die: I could yawn and be withdrawn and watch the world go by.

    Yup you are officially Rock n Roll
    Originally posted by colinw
    • gettingtheresometime
    • By gettingtheresometime 17th Jul 17, 10:50 PM
    • 2,485 Posts
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    gettingtheresometime
    • #3
    • 17th Jul 17, 10:50 PM
    • #3
    • 17th Jul 17, 10:50 PM
    I have no really words of wisdom but wanted to give you a virtual hug.

    It's hard but try & focus on getting the diagnosis...once you have that you know exactly what you're dealing with.

    In the meantime think about how you can support your mum in her recovery - she's probably panicking about practical day to day stuff.

    It might also be an idea if, next time you & your mum meet the doctors, ask if you can record the conversation. When your given news like this it's easy to panic & not really listen to what they're saying.

    Look after yourselves x
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    • silvercar
    • By silvercar 17th Jul 17, 10:52 PM
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    silvercar
    • #4
    • 17th Jul 17, 10:52 PM
    • #4
    • 17th Jul 17, 10:52 PM
    benign cyst, fibroid....could be anything. They won't know until they operate, at her age it is often seen as sensible to remove everything as there is no need to preserve fertility.
    • Valli
    • By Valli 17th Jul 17, 10:53 PM
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    Valli
    • #5
    • 17th Jul 17, 10:53 PM
    • #5
    • 17th Jul 17, 10:53 PM
    ^^

    what she (JJTTFisted) said (re the hug and the not searching the WWW for 'information') - I am in an entirely different profession.

    rest of it sounds like good advice.

    (((hug)))
    Make two - and freeze one!
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    • shiningfaery
    • By shiningfaery 17th Jul 17, 10:56 PM
    • 215 Posts
    • 1,757 Thanks
    shiningfaery
    • #6
    • 17th Jul 17, 10:56 PM
    • #6
    • 17th Jul 17, 10:56 PM
    Thank you, I know I may be jumping the gun. I can't help it.

    I am still scared at the prospect as survival rates for ovarian cancer are not overwhelmingly promimising
    • peachyprice
    • By peachyprice 18th Jul 17, 8:17 AM
    • 18,219 Posts
    • 41,693 Thanks
    peachyprice
    • #7
    • 18th Jul 17, 8:17 AM
    • #7
    • 18th Jul 17, 8:17 AM
    Ovarian cysts greatly increase the risk of ovarian cancer in post menopausal women, did they say they wanted to do the hysterectomy as a precaution?
    Accept your past without regret, handle your present with confidence and face your future without fear
    • Pollycat
    • By Pollycat 18th Jul 17, 9:04 AM
    • 17,058 Posts
    • 43,090 Thanks
    Pollycat
    • #8
    • 18th Jul 17, 9:04 AM
    • #8
    • 18th Jul 17, 9:04 AM
    It's hard for you but must be even harder for your Mum.

    Regardless of how you feel on the inside, try to be positive & upbeat for your Mum.

    Hugs to you both & I hope the diagnosis is the most positive it can be.
    • Gavin83
    • By Gavin83 18th Jul 17, 11:19 AM
    • 4,361 Posts
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    Gavin83
    • #9
    • 18th Jul 17, 11:19 AM
    • #9
    • 18th Jul 17, 11:19 AM
    As someone who has recently had several family members told to expect a serious illness, only to then be told it's something minor my advice would be not to worry until a solid diagnosis is in place. It's more likely to be something minor than something major.
    • Ilona
    • By Ilona 18th Jul 17, 11:46 AM
    • 1,828 Posts
    • 6,371 Thanks
    Ilona
    Straight off I will say I am a worrier always have been.

    My mum has had a some issues with her menstrual cycle which has been cause for concern, she's had tests and scans done. Today we went to gynecologist for discussion and the senior registrar kept saying cancer.

    By end of the conversation she left me with the impression that they are expecting a diagnosis of ovarian cancer, she has thickening of the womb after menopause and a cyst of 19cm diameter approx.

    Their proposal is a full hysterectomy including ovaries tubes and cervix. We won't know till then 100% if it is or isn't. She is 57, and after looking online at ovarian cancer I am not left with a whole lot of optimism regarding survival rates.....has anyone got first hand experience here that can shed some wisdom, help or anything that will help me right now..........
    Originally posted by shiningfaery
    When you have these conversations with medical people it doesn't always sink in. You will pick up on words that you hear bandied about everywhere, and miss vital information because your brain goes into panic mode.

    When I was 59 I collapsed in the middle of the night with massive abdominal pains and had to call an ambulance. They examined me, and put me in a bed. I had an xray and they said I had a very big cyst on my right ovary. I immediately thought of cancer. I went home, and the following week I went to see the consultant. He told me it would be best to have a full hysterectomy. I was shocked, why so drastic. He said that was the best option, take everything away, no further problems.

    Four months later the op was done. They checked what they had taken out and said it was benign, no sign of cancer. They had to cut me open because it was a big cyst and they wanted to get it out in one piece. Sometimes these ops can be done through the vagina.

    Nine years later and I am fine. What I am saying is don't jump to conclusions before you know all the facts. My surgeon didn't know what he was going to find till he went in there. When you go for your next appointment take a deep breath, have some questions written down on paper to take with you, and go through them. No matter how daft the questions may seem, you need answers to them. Don't be afraid of repeating questions if you don't understand the first answer. You should not be leaving an interview with impressions, you want facts.

    While I was waiting for my op I went back to work to keep my brain occupied. I kept myself busy, Four months is a long time to worry if you have cancer or not.

    Please try and calm down, it's natural to think the worst, but keep it in mind that there is a very good chance that it might not be as bad as you first thought. Oh, and stop looking online.

    Best wishes,
    Ilona
    I love skip diving
    • Jojo the Tightfisted
    • By Jojo the Tightfisted 18th Jul 17, 7:57 PM
    • 22,583 Posts
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    Jojo the Tightfisted
    Thank you, I know I may be jumping the gun. I can't help it.

    I am still scared at the prospect as survival rates for ovarian cancer are not overwhelmingly promimising
    Originally posted by shiningfaery

    No, sweetie, they're not. But people do survive. And survival rates for other gynaecological cancers are much, much better. They've seen 'something' and some thickening of the endometrium, not 'there is definitely cancer'.

    Overnight, I've remembered something that happened to my mother - she had terrible back pain, had gynae problems, and was sent for a scan on her lower spine when she was 48. They saw a large mass, which obviously scared her a lot and galvanised the NHS into superefficient, worth every taxpayer's penny mode.

    Turned out, after the hysterectomy/lab tests, that she had fibroids, which were entirely benign, and a completely separate spinal problem that was also dealt with surgically once they'd dealt with the scariest looking thing why taking everything out at once, no need to ever worry about any of the area again.

    The internet wasn't around then - I'm sure she'd have had me looking for information like you've been doing, but it wouldn't have revealed that, apart from the inconvenience/discomfort of the operation(s), there was nothing life threatening.

    I think this must be the hardest part for anybody - the not knowing stage. Because, just as where the stories you read have the scariest images, your imagination is going to fix upon the scariest things.

    I can't stop you doing it, but there is nothing to be gained by you doing it right now, because nobody knows exactly what your Mum needs to be treated for, not even her doctors. Please, try and save your emotional energy until you know it's needed.

    And get that help!
    I could dream to wide extremes, I could do or die: I could yawn and be withdrawn and watch the world go by.

    Yup you are officially Rock n Roll
    Originally posted by colinw
    • UKTigerlily
    • By UKTigerlily 18th Jul 17, 9:14 PM
    • 4,267 Posts
    • 5,266 Thanks
    UKTigerlily
    I know it's a worrying time, but hopefully it will be ok. My Mum had a 20Ib ovarian cyst removed/hysterectomy @ 55 & all was fine. Hoping for the best for you & for her x
    2015 weight loss: 86/100Ibs
    • Novalie47
    • By Novalie47 18th Jul 17, 9:31 PM
    • 1 Posts
    • 3 Thanks
    Novalie47
    Hi just wanted to share my experience long story short after long period of time & various seemingly unrelated issues I was diagnosed with an ovarian cyst. My blood work showed excessively high reading which indicated ovarian cancer.
    This led to me being put on fast track pathway for treatment. First ultrasound scan the cyst was to big for the screen! Ct scans showed mass within cyst, due to this despite several emergency admits prior to op they wouldn't try to do anything that could relieve pain as they wanted to keep everything contained in cyst. Tbh at that point I was in so much pain I wanted them to do anything, thankfully they didn't. Pre op consultant recommended full hysterectomy I had one question if I didn't have that could I get another cyst etc. Her answer yes mine was take everything away then. Big op & consultant did lots of scrapes of insides to send for testing to make sure nothing had spread. Cyst itself weighed 1.5 stone (21lb) had regular Ct scans & check ups after for several years. Oh & results from urgently ordered smear test to determine what type of hysterectomy to have came back 2 months after op! with results you have suspicious cells possible malignant need to return for further investigation. Never been so relieved that I'd opted to have a full hysterectomy as I was then. Very scary time but as previous poster said until surgeon physically 'goes in' they won't know the full picture. In my experience they are very cautious until then & will give you every possible scenario so you are prepared. It won't stop you worrying as that's natural but having people to discuss with & support you is a definite help. Sending hugs.
    • edwink
    • By edwink 18th Jul 17, 11:06 PM
    • 1,602 Posts
    • 11,595 Thanks
    edwink
    My mum had Cervical Cancer when she was 51 this was in 1985. She was given a total Hysterectomy. After that she was fine and got the all clear.

    Notice I say this was in 1985. Try and remember that this was 32 years ago and that medical progress has come a long way since then.

    Like others have suggested please stop looking things up on the internet. I know you have said you are a worrier but please be kind to yourself and save your mental energy for the forthcoming appointments you attend with your mother because she needs your support I am sure during this time. That way you will be able to take more in at these appointments and not go there mentally drained before you even get in the door.

    Also as others have said write down any questions you and your mother may have and if you don't understand anything whilst there ask them to explain fully what they are saying to you.

    We will help support you on your thread here and you save your mental energy for supporting your mother when she needs you most.

    Sending you a big HUG and also one for your mother too.

    Edwink x
    Last edited by edwink; 18-07-2017 at 11:11 PM.
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    • PeacefulWaters
    • By PeacefulWaters 19th Jul 17, 5:57 AM
    • 6,587 Posts
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    PeacefulWaters
    I've had a terminal diagnosis. I'm eight months into a thirty two month "average survival" period. A treatment that will only work so long.

    It brings the inevitability of death closer. But I've found a relative calm about this and while pain levels are low I'm doing a lot of the things I've always wanted to do and having a ball.

    There's a BBC documentary called "A Time to Live" that documents the remarkable freedom of thought having such bad news can give. It might still be on iplayer or YouTube.

    Obviously the initial prognosis hit me hard. It also took me a little time to work out the different impacts on those around me and realise that it's not just about me.

    I really hope your Mum doesn't get the really bad news that you fear. But if she does, there may be a reasonably long window to enjoy her, both in reasonable health and beyond, before the inevitable happens.
    • Caroline_a
    • By Caroline_a 19th Jul 17, 10:54 AM
    • 3,852 Posts
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    Caroline_a
    I had a cancer diagnosis where my children were told that I would be unlikely to be around in 3 months. The NHS leapt into their excellent best, chemo followed and finally a stem cell transplant (ok was a different form of cancer than you suspect your mother of having, but still v poor initial outlook).

    I am still around nearly 2 years later, having had 2 clear scans over the past 8 months, living life to the full, holidays, working full time etc etc. Very often in these cases Google is NOT your friend! My advice to your mum would be stay positive, maintain your sense of humour as much as possible, and (this was a big one for me!) do what you're told to do by the medics!

    I'm sure all will be fine x
    • skint_chick
    • By skint_chick 19th Jul 17, 8:50 PM
    • 651 Posts
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    skint_chick
    My mum was diagnosed with endometrial and ovarian cancer a few years ago in her mid 60s after some random bleeding. She had surgery, a full removal of all her lady parts, and recovered really well. She has had regular checkups and scans ever since and has been fine. She had keyhole surgery and was up and about in a few days, much to everyone's surprise. It was hugely challenging for me emotionally as she was very much putting a brave face on it while I was sobbing. Even now thinking about it makes me tear up. One of my schoolfriends died of ovarian cancer last year, almost 3 years after being diagnosed as only having weeks to live. Cancer in situ is quite common at that age and if it hasn't spread then the surgery should resolve it - they usually remove lymph nodes during surgery to check. My mum was lucky and had surgery within 2 weeks of her test results, that waiting to find out is the hardest part - after that even if it isn't the news you want at least you know and can start dealing with it
    "I cannot make my days longer so I strive to make them better." Paul Theroux
    • Loz01
    • By Loz01 19th Jul 17, 10:10 PM
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    Loz01
    I know its hard but try NOT to google... it really shows you the worst of everything.

    Ive had a sore shoulder for a couple of weeks and the earlier on I found myself reading about shoulder pain due to metastatic breast cancer!!! It really can put you on high alert to google stuff.

    Try not to panic but (of course) easier said than done
    It's not God I have a problem with... it's his fan club.
    • Amber Sunshine
    • By Amber Sunshine 20th Jul 17, 12:57 AM
    • 1,588 Posts
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    Amber Sunshine
    IF it is ovarian, don't panic. It's true that ovarian hasn't been one of the best for survival rates, but those rates are improving. Treatments are getting better as well. I was diagnosed a year ago & had the lady bits removed. While it's too early to tell how good my prognosis is, my oncologist is very happy with the outcome of chemo. And I'm optimistic.

    In fact, even if it is cancer your mum may not need chemo. As Skint Chick says, surgery can be enough. My gynaecologist told me that cancers of the female reproductive system are often 'contained'. The only reason I needed chemo was that there were cancer cells in a couple of lymph nodes. Try to think positive. I know it's hard, especially when you're a worrier, but cancer is NOT an automatic death sentence - and at this stage you don't know for sure that's what your mum is dealing with.
    • lika_86
    • By lika_86 20th Jul 17, 6:53 PM
    • 1,094 Posts
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    lika_86
    I went through a similar panic when my mum was diagnosed, I googled her cancer and looked at the survival rates and freaked out. The important thing to remember is that many people live much longer than the rates that are published (although the least helpful thing I found was everyone I spoke to telling me about how their cousin's postman's friend's grandma with a completely unrelated form of cancer had all but been written off but lived another bazillion years). The thing is, you can't be scared by the statistics, they are what they are and albeit flawed, the most useful thing they can do is give you the chance to maximize your time with your mum. Best wishes to both of you.
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