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Sam's Story...

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nostalgicsam
Sam's Story...

3 months ago I was diagnosed with enodmetrial cancer, I am devastated as the only treatment is a total hysterectomy... this of course means no children for me ever....I have just turned 37 and my husband is 42, we have been married 5 yrs and have been trying to conceive since then. I can't stop crying I am worried about the cancer, the operation, menopause, and most of all the un-ending sadness of never having children..

I have had irregular periods since 1996. I was referred to a gynae consultant by my GP in 1996 and 2 years later in 1999, but all the consultants 'checked me for' was cervical cancer and fibroids...(despite not being on the pill, not having regular ovulation and having unexplained bleeding) by 2000 I was suffering badly with bleeding so went back to my GP who put me on the pill, this didn't work so after a few months I was put on northisterone (a progesteron) which did regulate the bleeding but I wasn't sent back to the hospital to be checked again for anything else. I got married in 2000 and in 2001 we wanted to get pregnant so I stopped taking the northisterone (as can't take when trying to get pregnant - I had had no bleeding now for over a year and needed by periods back to try and conceive) no pregnancy by 2002 after a year of trying but periods were irregular so didn't worry, but by 2003 no pregnancy and now irregular leeding had returned, started to worry and knew hospital liked you to have been trying for a year or 2 before investigating, anyway y end of 2003/2004 I went back to the doctors...

I was then referred to the infertility unit at the hospital, (so I was now sent to the hospital due to the infertility not the bleeding !!) the gynae fertility specialist immediately sent me for lots of horrid checks and orocedures... to find the cause of the bleeding and not just the infertility...

They were shocked that I had ever been sent for any of these tests etc. in previous referrals, anyway this all took ages, appointments, cancellations, etc. etc. and in Nov 2004 I finally went foran endometrial biopsy after they looked at everything else...this horrifically showed clear as day (and I could see and feel it !!) that my womb lining was over 15mm thick !! over 5mm is a warning it could e endometrial cancer !! and mine was over 15mm !!) the biopsy also showed changing cells which they weren't sure aout so I was booked in to have a hysteroscopy and a D&C on 6 June.

After the operation they told me they found polyps and an enlarged uterus and thickened endometrium, but they thought it was going to be non cancerous polyps (as cancer ones are very rare) or hyperplasia (a pre-cancerous cell change) that could be treated with progesterone and then they would try and get me pregnant... felt releived....went home to recover...

Got a letter to attend an out patient appt for my results of the D&C on 24th June, I wasn't particularly worried as they always tell you news face to face so wasn't expecting anything bad, Hence the results were a total shock... my consultant kept me ewaiting for an hour, entered the room didn't even say hello and just blurted out "it's bad news you have enmdometrial cancer" .....I guess like anyone I never thought he was going to say cancer, but cancer requiring a total hysterectomy and ovary removal causing infertility and giving me a surgical menopause it's a triple whammy !

My op was originally booked for 8 Aug, however my fertility consultant said I could try IVF to freezesome embryo's if my gynae consultant thought itwouldn't make my cancer gow, anyway they gavethe go ahead, I accepted the risk of delaying the surgery and had the IVF, this took months ecause I had to get funding (ebcause of the cancer) and the IVF medication and treatment itself took weeks, I had my eggs collected on 5 Sep, I had 24 follicles, 24 eggs, they only collected 17 as I woke inpain from the anasthetic.... I was very ill afterwards and ended up in hospital suffering from severe OHSS (ovarian hyperstimulation syndrome) I was in hospital for a week, it was awful I rec'd bad 'care' and hated it I had to be drained of 8 litres of fluid (awful) and on a drip... my op had been re-scheduled to 12 Sep but as I left hospital on that day and my surgeon said we need to leave time for you to recover and your hormones and ovaries get back to normal before removing them, it was delayed again...

My new op date is now 17 Oct, however I am now waiting for a second opinion aout my surgery and the other possible treatments and surgical options, my consultant surgeon has been horrid, he has refused to answer my questioins and thinks I am being difficult, anyway had a second opinion appt in Portsmouth last week - the consultantdidn't show up !! so am waiting again in limbo, worried that the cancer is growing day y day and spreading....but I refuse to agree to surgery until my questions have been answered...

I am scared to death, I don't want any of it don't want cancer !! (who does) don't want my cervix removed, my vagina made shorter, no sex drive, to have a a severe surgical menopause (no HRT with endo cancer allowed), more at risk of osteoporosis & heart disease and worst of all to be childless......

I am devestated....I want mine and my husbands baby so badly, he is wonderful and we are so happy.... I just can't imagine not having a family, I am constantly thinking about never having a baby, never experiencing all those things I wanted to like, making birthday cakes, days at the beach, first day at school, the joy of Christmas,watching them take their first steps and of course telling my lovely husband that I am pregnant and seeing his face light up...life feels so unfair....

I am not coping at all, I feel like I am on death row and after the op will e phsically and emotionally scarred forever, I fear I won't feel like the same person ever again, I'm even sdcared I won't e able to saty in hospital and will run away before they can get me into the operating room....

I feel like no-one understands what I am going through and my doctors keep saying you are rare....(Only 44 women under the age of 40 had endometrial cancer in the UK last year)....all I want is someone to tell me everything will be ok, but I know they can't which makes it worse...
Sam

AliN

(((((((((((((((Sam)))))))))))))))

I have emailed you

Alison xxxxxx

Radical Hysterectomy for 1b cervical cancer September 2004

admin

Dear Sam
What a story! It seems you've known you've had cancer for some time without having had any treatment yet. That must add to your worry - it is the waiting that is the unbearable part for most of us.
I'm so sorry for the terrible pain you are going through. I hope you will be able to find a doctor you trust. I did the same as you and sought a second opinion at the last minute, which delayed my treatment. I also found it very hard to trust what the doctors were saying - couldn't accept any of it really.
I had CC adenocarcinoma stage 1b1 diagnosed Dec 03 - chemoradiation finished April 04. I still have all my bits but they've been microwaved and so am infertile. I've hurtled into menopause, which I was desperately ashamed about, but it hasn't been nearly as bad as I feared. I'm in remission and I now feel fit, well, and full of hope for the future. There is a life worth living on the other side of this bloody cancer nightmare. I wish you all the best and hope you'll find the strength to get through what you have to go through.
Amanda

onlyme

((((((((((BIG BIG BIG HUGS TO YOU AND HUBBY))))))))))

:shock: I can't begin to imagine what you are going through and my words seem very empty I just wanted to let you know that you're in my thoughtsxxxxxxxxxxxxx

Survivor of 1b1 cervical cancer, Radical Hysterectomy 13th April 2005

Ten years and counting :D

 

Sue M

Dear Sam,

I am so sorry to hear what you are going through and it seems that you have not quite received the care and attention that you deserve. I just want to let you know that I am thinking of you.

I know how devastated I felt (and still feel) about the whole thing and how totally unfair it seems....but I am beginning to see a light at the end of the tunnel.....please keep in touch and take care of yourself. There are lots of people here you will really understand all the emotions you are going through right now.

Sue xxx

admin

Hi Sam

Welcome to Jos I know you will find support on here.

Personally, I am in a different position because I was 45 when I was diagnosed with cervical cancer and had had children, however, I know there are ladies on Jos in a similar position to you who will help and support you.

All my love to you

Janie xx

Janie

Sorry Sam...... that was me....... I hadn't logged on!!

Love Janie xx

nostalgicsam

thanks all, nothing has changed, still no news re: the second opinion. I'm still devestated and dreading having to have the total hyst and ovary removal, want kids so badly!! and don't want menopause with no HRT allowed !! the days seem to be flying by as the op looms, my hubby is so sad there is no other treatment as he wants kids too.. I feel so guilty I can't give him kids....love him so much...hate the cancer but hate the infertility more...
Sam

gabi

hi Sam:

I know everything seems unfair now. Just give it more time, and you'll see that life gives you more opportunities.
love. Gabi

gabi

nostalgicsam

Dear Friends,
Well saw my lovely fertility consultant on Monday; she showed me all my notes and results, she confided in me that her mother died of endo cancer at age 53, so she knows all about it and doesn't want me to die....she wants me to be around to be a mummy.....she agrees entirely with the fact that my GP and others didn't spot or tell me symptoms, she said not to think it's my fault because I didn't know these symptoms could lead or could be cancer...she said I really should have everything takrn out to have the best chance of living, she said she agrees that my consultants communication is ****, she said she thinks he was so shocked and couldn't deal with my results and didn't know what to say to me....anyway she explained and drew a picture of everything, she answered all my questions, although most were irrelevant as she said to me all you really want to ask me is what would I do isn't it and I said yes, she said I would have it all out inc. ovaries as we can't be sure there aren't any cancer cells left behind ianywhere, but she said I can have HRT ? am so so confused as everyone keeps telling me different things about HRT....I am still scared to death, she said she is on call at the weekend and is working on Monday so will come and see me after the op, she said I can ring her anytime...ah, I told her that my consultant has made my suffering worse by not talking to me and she said I know, but she said again he is a brill surgeon !! she said you are very scared and depressed and it is natural, sadly she said you won't ever feel the same afterwards, but you will learn to cope.....she said shall I speak to crawford and I said (lost it a bit) tell him what you like I am past caring !! I also said I don't want him telling me any bad news !! after the op i.e. how it went/looked and she said he'll have to tell you...BAH !! how cruel is this !! ah yes she also told me she was giving a talk to GP's that afternoon about irregular bleeding !! i.e. something is happening at last to make GP's realise what this can mean/lead to...ARGH too late for me...she told me to keep busy, to cook, clean and shop !! and to concentrate on the op and getting better and not on anything else yet...I know but it's easy for someone else to say, Adrian is sad he doesn't know what to say to me, he does also trust my fertility consultant and he has also now I think accepted the need for the op, I think it's hard for him because he used to work in the very theatre I will be in so has seen many hysts and knows how they treat you and how often things go badly that they don't tell you about like on BODIES !! which I am convinced is exactly how my surgeon carries on !! Adrian left surgery as he couldn't stand the way patients were treated and his surgeons always used to tell him he cared about them too much !! Also my MRI results show something on one of my kidneys !!which they think isn't cancer and is ok !! think !!
So part 2 is that I had my pre-op appt. yesterday, which was the usual awfulness...I waited 30 mins to be seen by yet another different nurse who was gruff, I cried a lot she couldn't find a vein to do the blood test, she said I had to go to the general hospital (diff hospital) to have blood test done, I had to tell her I needed chest xray - she wasn't going to send me for one !!she spent ages taking all my details down again !!!!!!!!!!!she said go there and then come back and wait for the consultant at about 12:30 I said that was ages and she said the letter does say you can wait upto 5 hrs ! I said I would run away if I had to stay there that long, that got him and his registrar there ASAP !! he said how are you !!! DOH !! I cried he said I know you're upset but need to know you're happy and ready to have the op, I said no I am not happy !!! and will never be ready to have the op !! I think he thought I meant it literally, I was just upset...he said you went to ports and you can have d&C and coil there if you wish but I don't think you can have a coil as your uterus is too bulky !! cheek !! he said I need to know what you want to do, you need to help us out here as we can't do anything to treat you unless you agree to the op, he said I don't want you to blame us for bullying you into having the op 2 months down the line !! HA !! he said you spoke to the fertility consultant yesterday, and I said yes, I know I need to have it done, he said if I thought it would help you to accept it if I moved it forward 2 weeks I would, but he said you're right you'll never be ready, he reiterated that everything should come out, ovaries and cervix and lymph nodes, he said the more clear lymph nodes I take out the best we can decide about the need for radiotherapy.....he filled out the form he added lots more risks this time, since I complained and questioned him !! no one said anything about Adrian being allowed to stay with me (I was told previously that he could stay) the nurse said nothing, or about what time I have to be there....of course I've also now seen all the other women in for hysts too next Monday not one of them is under 60...this depressed me as it makes me feel really like the token young person with cancer...of course none of them seemeed depressed...I hope I have my own room...really can't face eing in there and having to talk to others...esopecially when they ask the dreaded children question...anyway I then went to general and waited around there for blood test and xray, came back and waited to see anaesthetist again, same woman and at least she remembered me !! said I can have a pre-med if I like and she will lay me down for the spinal if I am very sleepy, am so scared to death now I've been there and signed the form, and yet again 2 visitors with little kids sat opposite me in the waiting room..........it was so hard not to break down in front of them...the anaesthetist told me she would get the nurse back to take my xrays off me that was at 12:45, at 2pm the nurse waltzed passed - everyone else had now gone home and said oh I didn't know you were still here just to give me the xrays, you could have gone over an hour ago !! I knew that !! so don't hold out any hope of it being any better experience than it has ever been before my consultant brisked past me to go home at 1pm !! nice work if you can get it !! I looked right at him but he looked down at the floor he couldn't even look me in the face ....!!! also my gynae cancer nurse who emailed me to say she would come and see me whislt I was there at pre-op never turned up...I am more depressed now, after being there, they make me feel awful, I told the nurse I am treated badly each time I come here, she said by who, I said I'm not willing to say who, so that probably annoyed her, she said I have to accept the op and get on with it ! yet again more care, support and understanding from the NHS NOT !!!!! I am totally scared and dreading it more than death itself !!
Sam

admin

Hi sam

Good luck with all you are going through.

I think you need to speak to your support nurse about how you are feeling. in particular your concerns about the conduct of the surgeon.

I think it is important to go into the op with a positive mind set. I know this is difficult. I was in pieces too last year when I was diagnosed. it really hit me when I was admitted to hospital. I totally fell apart.

The doctors and nurses should be understanding of this and you should feel cared for. YOu could also speak to Macmillan cancer relief helpline - they have set up a patient charter for cancer patients. The needs of cancer patients are different to those of other patients.

You do have a right to a second opinion with the nhs - maybe a move to a specialist cancer hospital would be more appropriate.

I know this is a bewildering time and there is so much information to take in. I note that you live in Southampton. I know other people that have been referered to the Royal Marsden and have excellent treatment. I have also heard very positive things about Christies in Manchester which is another specialist hospital.

I am glad that you feel confident with your fertility doctor. Maybe you could speak to her about how you feel about surgery. Surgeons and their teams who treat people in the way that you describe should not be in medicine.

You shouldnt feel rushed into treatment either.

Best wishes and good luck. You will get through this.

Caroline

admin

Dear Sam
I'm so sorry to read what utter terror and distress you are in. Cancer is so bloody unfair and cruel.
I also found the cancer very hard to accept, was consumed by fear, and the most painful thing of all was that I found it impossible to trust the doctors. I was 1B1 and desperately wanted a hysterectemy (ironically, reading your story!). They wouldn't give me one - for various reasons I won't go into - and I had to have the chemoradiation treatment instead.
I delayed my treatment by 10 days trying to find someone who would give me a hysterectemy only to discover the tumour had grown bigger since the intitial diagnosis and MRI. This caused even more terror and distress for me. This period was so painful - I was almost demented, and I can't bear to look back on it even now

Here I am 18 months later - OK i'm menopausal - but I feel well, positive and most of all happy with life.
You'll probably hate me for saying this.... but please, please, try to give yourself a break. Your fertility lady sounds wonderful - and she told you the surgeon is an excellent surgeon. He may have shit people skills, but it's better his skills lie in the operating theatre than the other way around.
It is a bitter, bitter thing that you have cancer. My favourite radiographer said to me when I was crying and raging with snot everywhere and me knickers down on the radiotherapy table 'you must trust the treatment'. And I did cos I realised I really had no other option!
Sorry, I hope this isn't horribly preachy, but I was really touched by your message and I will keep my fingers crossed you find the strength you need to get through this terrible time.
Lots of ladies on Jo's have been where you are now - I promise there is life, hope, laughter and happiness on the other side of all this and you WILL get there. Promise, promise, promise!
Amanda

snoopy

oh sam sweetheart i feel for you so much! We have all been in your position we are not treated with kid gloves when we feel we should be ! We have all had most of your fears and thoughts and have been where you are now! Some of us are fortunate indeed to have children and i myself dont know what to say to you on that issue- im sorry. But we are all here for you I see so much in what you say it takes me back to that awful time - there will always be someone here to help you and wiil totally understand how you feel. Will be thinking about youxxxxxxxxxxxxxxxx

Tracy

nostalgicsam

Hi,
thanks to everyone who's replied and eben so nice and supportive, well it is now only 5hrs until I go into hospital for the total hyst...I am scared stiff, just wanted to say I obviously won't be on here for a while, but when I can I will let everyone know how things went...
Sam

Rachel

Hello Sam,

just wanted to say we will be thinking about you and hope that you have a speedy recovery from the surgery.

I was very nervous also before I went in for my surgery...it is only natural that you would feel that way.

All the very best and will look forward to hearing from you as and when you feel ready.

Good luck.

Love Rachel xx

Radical Hysterectomy, Lymphadectomy and ovary removed in Feb 2005 following cancer diagnosis. Further surgery in July 2005 to remove remaining ovary.

snoopy

will be thinking of you sam let us know how you are as soon as you can !!!

Tracy

CHESKINS

Hi Sam,

Very best wishes... Speedy recovery.....

take care,
Caroline xxx

gabi

let us know how it went.
best wishes.

gabi

Caro

Sending my best wishes for a speedy recovery.

Love

CAroline

Caroline

Sarah x

Hello,

I hope your OP went OK and the care you recieved was better than all you went through pre-op with regards to bed side manners, consideration and receiving information.

I wish you well in your recovery.

Hugs x

Best Regards
Sarah x

Mellissa Crowley

Hi ya Sam,

Firstly big hugs to you xxxxxxxxxxxxxxxx

I was 23 when I had a radical hysterectomy, I also have no children and desperately now want them. I do also know how it feels to be that taken young person in a hospital ward, BUT although I still have some dark days I am here. healthy and happy, with a very lovely man who I met AFTER my op, there is light at the end of the tunnel. Try to be positive and I am sending you lots of healing love.

Mellissa x

Radical Hysterectomy for adeno clear cell carcinoma cervical cancer stage 1b in 2001 at the age of 23 - CC caused by DES Exposure- Ovaries Conserved. 10 years all clear! Discharged from The Royal Marsden April 2011 [email protected]

admin

Dear All,
thanks for your kind thoughts and words....well it'sall over now....sorry I haven't been able to e-mail since coming home at the weekend I think I left hospital too early but couldn't stand staying in there any longer. I have only just been walking about properly the last couple of days and I can only lie or stand NOT sit as way too painful. The anaesthetic experience was worse than the operation !! it took 30 mins !! and now the pain of non working bowels and returning nerves are as painful as the obvious horrible scar and internal healing that us trying to take place. My wound nastily has been oozing but is not infected, the nurses told me to keep it washed and aired which Adrian has done a couple of times but it stings like hell. I am more scared about getting my results about the cancer stage spread and grade, I'm dreading hearing more bad news... I'm not sure I can cope with anymore. I'm also worried about needing radiotherapy I'm not sure what they will advise just hope to God the cancer was still early stage when removed, luckily my consultant did manage to remove my lymph nodes which apparently increases my chances statistically as if they do contain any cancer at least they have all now been removed. I also have 47 clips to be removed !! anyway this is all on Monday so will let you know how it goes.. I have to go now as I can't stand or sit for too long at once.... thought I'd feel better than this by now...
Love sam

Sue M

Sam

Thinking of you.....lots of positive thoughts your way......

Sue xxx

admin

Glad to hear you are out of hospital.

Take it nice and easy and get lots of rest. Also pamper yourself.

HOpe you get the results soon too.

Best wishes

Caroline

admin

Hi Sam
Really good to hear you are home safe and sound. Take it easy and I hope the horrors of the last few months will begin to fade soon. Let us know how you get on
Amanda

Kevin

Hi Sam

Glad to hear you are ok was thinking of you.

Take care with your recovery remember take each day as it comes

love

Kev

Kevin
Brother of a cervical cancer patient

admin

DEAR ALL,
THANK GOD, MY CONSULTANT HAS TOLD ME THAT I AM OK !! NO NEED FOR RADIOTHERAPY !! THE CANCER HAD SPREAD FROM THE WOMB LINING INTO MY UTERINE WALL BUT IT WAS ALL CONTAINED WITH NO CANCER CELLS FOUND IN MY OVARIES, LYMPH NODES OR WASHINGS !!
I AM FEELING WEIRD I KNOW IT'S GOOD NEWS BUT WISH IT HADN'T HAPPENED AT ALL AND AM STILL SAD ABOUT THE NO BABIES BUSINESS.....AM ALSO NOW THINKING MAYBE I WOULD HAVE HAD TIME TO TRY THE COIL AND HORMONES THERAPY....
HE SAID WILL YOU SMILE FOR ME NOW !! I MUST TELL YOU HE WAS LOVELY TODAY HE TOLD ME I HAD TO HAVE THE OP DONE AND I CAN NOW GET ON WITH MY LIFE !! YEAH RIGHT I SAID I AM STILL DEVASTATED THAT I CAN'T HAVE A BABY...ANYWAY I'M FEELING A LOT BETTER TODAY IN MYSELF BUT THE PAIN IS STILL HORRID AND ADRIAN COULD HEAR ME SQUEALING WHEN THE CLIPS WERE REMOVED, I HAD 47 !! IT TOOK 40 MINS TO GET THEM OUT !! ANYWAY IT FEELS AWFUL NOW THEY ARE OUT AND HE WARNED ME ABOUT IT POSSIBLY OPENING UP...HE SAID I AM DOING WELL AND WILL BE SEEN IN 3 MONTHS TIME, SO NOT EVEN A 6 WEEK CHECK UP FOR ME ... IT FEELS VERY STRANGE IT FEELS ALL UNREAL LIKE IT HASN'T HAPPENED, OF COURSE I CRIED AGAIN THIS TIME WITH RELIEF ABOUT THE CANCER BUT STILL WITH SADNESS AT WHAT HAS HAPPENED TO ME, UT I AM TRULY THANKFULL TO BE CLEAR OF CANCER, I AM WANTING TO RECOVER WELL NOW AND START THE SURROGACY JOURNEY (DO WATCH ONE LIFE TONIGHT IF YOU CAN) I PRAY TO GOD I CAN FIND SOMEONE TO HAVE OUR BABY FOR US.... ANYWAY CAN'T SIT FOR TOO LONG SO AM GOING NOW, LOVE AND THANKS TO YOU ALL
SAM

nostalgicsam

Hi All,
hope you are all well, just wanted to talk to someone and tosay that physically I am doing fine ut emotionally I am a wreck, I can't stop crying I was a wreck efore the hystbutsince the op it seems to have hit me like a rick wall that I can now never have a child, I am so worried that surrogacy won'twork our for us....it isn't easy to find somneone to ask to carry a baby fory ou and of course it costs loads in expenses topay to them upto 10k ! just wishing I had a sister or friend to ask but I don't....it's a shame becuase my clinic are wonderful and are raring and happy to go ahead with a surrogacy arrangement for us, we just don't have the most important thing a tummy mummy...
I know I am lucky to have survived the cancer (hopefully it won't return)but I don't feel like that all I feel is distraught about living a childless life...
itsounds awful I know and I am lucky to have undergone IVF and embryo freezing prior to my surgery, but feel that the odds on finding and affording a surrogate mother and it working are stacked against us...

I think maybe as I was trying to get pregnant for 2 years when someone finally found out the reason why was canceris what is making me so depressed.....Anwyay just need ed to talk about it, thanks
Sam

Sue M

Sam - I have sent you a PM :roll:

Sue xxx

nostalgicsam

Hi All,
just wanted to give an update on me and my sadness....
saw my GP this week who wasn't very sympathetic, SHE said I really must get over all this now and get back on with my life !! she said there's more to life than children as I looked at all the photos on her wall of her kids... :cry:

Am really suffering with surgical menopause, have complained to my hospital that I haven't been seen by anyone since my total hyst..need someone to help me re: menopause, bone density, diet etc. no one seems to care about me at all, feel like I was operated out and sent home and that's that....do they really not care and understand emotionally what I am going through, to have physical and menopause symptoms on top of it all is like being kicked when you are down already.... :cry:

My consultant and nurses keep telling me that having frozen embryo's is a positive thing, are they going to find me a surrogate and give me the 10l to pay for it then ? I don't think so, can't beleive they just can't think how they would feel, my consultant told me in hospital that if all this was happening to his wife he would be petrified ! and yet he doesn't seeem to care or want to speak to me or anything... :cry:

Has anyone else on here gone through or is considering surrgacy out of interest ? following a hyst ? :(
hugs to you all
Sam