New to group

Hi guys I'm new to this group on the 4th December I was diagnosed with ovarian cancer. On the 4th January I had a full abdominal hysterectomy and thought that would be the end of my troubles. However as the cysts were stuck to my lining the surgeon feels there could be some cells left behind although the biopsy is unclear on this. He has sent to royal marsden for 3nd opinion as one oncologist has said there is nothing there another has said there is. This has been going on for weeks I feel like my life is over I cant move on I'm still on only 4 week post op but recovering well. They say I may need more surgery which I really don't think I could cope with. We have our first grandchild due end of March and I feel I cannot get excited yet. We've should have conclusion on the 7th so not too long to wait. I'm sorry to sound like I'm whining and a miserable so and so I'm trying to remain positive but it's hard. Any advice would be great.😊

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  • Hello Lovely, and welcome to the club nobody wants to be in but we're pleased to meet each other online and share our experiences wether that be supporting someone with OC or going through it like yourself.

    Everyone here is very nice and very supportive of everyone on this site, we all answer questions to the best of our abilities if we can, if not we'll try to advise you to call your Cancer Nurse Specialist (CNS) or oncology team.

    Have you had any line of chemo yet and do you know the grade of the cancer?

    I know you'll be tempted to talk to Doctor Google about statistics and stuff... please don't as it will send you all over the show, if doctors have already given you the usual rubbish of you have x% chance of survival over x years DON'T listen to them you're an individual and as I've told other ladies defy the odds, my special person was told 6 months max with chemo, she's nearly 2 years on.

    A new baby in the family is an amazing thing and something very positive to look forward to, to try and take your mind off it maybe go shopping with your daughter/in law and do some baby bits 😀

    Keep us updated and if you need anything just post someone always answers xxx

  • Wow thankyou so much for replying. They have said if it is there it is 3a grade 1 which I do not get as either it is there or it isn't?. I can't have chemo as the said it's not suitable for this Grade. xxx

  • The only thing I can think is that the biopsy is inconclusive? But yes it's either there or it isn't, hopefully you'll have more answers when you go to the marsden xxx

  • Yes thankyou of have everything crossed. xxx

  • Well I hope they find out what's going on soon, the waiting game does get old. I would try to focus on your new Grand baby, how exciting for you. And let the doctor know sooner would be better for you. And I'm sure you still have to healed up from surgery. I'm on my 2 week of surgery so I understand. Take care stay focused on the happy things💕

  • Thankyou so much yes I'm getting stronger each day. waiting is horrific I go to bed thinking about it and wake up thinking about it. I know there are alot of people worse off than me and I should stop moaning ha. xxx

  • Your definitely not moaning it's your story we all have different pathways we have similar diagnosis and similar experiences but we react differently to treatments..... your doing great it sounds the op is a massive one and takes some getting over .... oc diagnosis takes over your life and it's difficult to take back control and be positive.... waiting for a plan is hardest part ... the ladies on here are a fantastic support and have great advice they have helped me numerous times 🤗

  • Thankyou so much and agree I think it's definitely affected me mentally as well as physically. I'm so pleased I have found this group you girls are a god send. xxx

  • Hi welcome to the party.

    The reason they may not offer chemo is grade 1 cells are slow growing so don't respond to chemo as well as grade 3. It may feel like it is taking a long time but with a slow growth the time frame won't impact so greatly on the outcome. If secondary surgery is an option then I would definitely consider it

    LA

  • Hi yes it's just that I'm just getting over major surgery which has taken its toll also they said it would mean removing part of my bowel and having a temporary stoma while it heals which fills me with dread. xxx

  • I had a temporary stoma which I wasn't happy about, in 2015 when I recurred (stage 1C), but it's better than the cancer getting into other organs. I'm all for surgery over chemicals.

    LA

  • How long did you have to have it for and how much did it effect your day to day life please?

  • Do not dread a Stoma. I had a temporary Stoma and although it felt horrid at first I got quickly used to it and in some ways made life easier. You can control emptying it regular and only changing it ever two or three days apart. I had it reversed after 14 months.

    Don't be too worried about a Stoma. It is easy for me to say now but it really is not too bad. The bags are so tiny and others cannot see them under your clothes. I was assigned a Stoma nurse who provided mental as well as physical support through the process

    Hope your result comes back all clear but if you need further surgery have it done

    Sending you best wishes

    Loretta x

  • Awww thankyou Lorretta that eases my mind lots. Sorry to be graphing will it be actual poo that gets emptied?. Xx

  • Mine was an ileostomy so very watery stuff. No smell but has to be emptied more frequently than a colostomy. I think it is more like poo with a colostomy but the colostomy bag has to be taken off and thrown away when it is full. The ileostomy bag is emptied through a Velcro strip. If there is a chance you may need one you get well prepared beforehand and you are shown the bags and how to use them. I woke up from my initial hysterectomy with the bag on. It was a shock as my hopes were I would not be given one. However the ovarian cancer was Stage 3c and it was already on the outside of my bowel. The Ct scan and ultrasound had not shown it up. Had 10cm of bowel removed during hysterectomy. Saved me and after 14 months of bowel healing it was reconnected up.

    I hope you can avoid further surgery but don't let the Stoma worry prevent you having what is necessary done xx

    It is not as bad as it sounds.

  • Ok thankyou how have you been since?. Xx

  • Since having my Stoma reversed I spend far too much time on the toilet. I swing between diarrhoea and constipation but I think after bowel surgery it is not unusual. I have come to know where all the good toilets are. I have a disabled key for public toilets and pubs etc. Had one or two near misses with the runs and find constipation worse but have loads of laxatives at hand.

    That is one reason I did not mind the Stoma. Life was easier to plan around the bag. I emptied it in the morning and at night. The main worry with the bag was leakage. I dreaded it but it only happened a couple of times and it was in bed when I rolled onto it.

    We had a couple of holidays during the time I had the bag. Wrapped myself in a towel in bed just in case. However I was fine.

    Love and best wishes for no more problems for you.

  • Sorry for the questions if it didn't show on the ct scan how did you find out?.

  • My surgeon before my surgery did an internal vaginal exam and told me my bowel felt hard but he could not be certain my bowel was affected until he opened me up. Because of his suspicion he arranged for a Stoma nurse to see me before my surgery to talk to me about what a Stoma involved and to put a mark on my tummy where it would be best to go. Like you I was terrified. Bad enough having cancer and the massive operation. But at least I was half prepared.

    I woke up with the bag on. Had a good cry. Not just the bag. Everything. I dreaded the bag more than anything fir some reason. Thought I be a freak !!

    Had weekly chemo for 18 weeks. Then felt great for a good while.

    The bag became part of my life. Hated it at first but realised that it was keeping me alive.

    I coukdnt wait to see it go though.

    Hope your experience means no bag for you.

    I was just unlucky. My early symptoms were passed off as IBS

    I think things have changed since then.

    If you have to have a bag please contact me as often as you want.

    I can give you my email address but hope it is not needed. Lots of love and best wishes x

    💕❤️💕❤️💕

  • You are an absolute angel. xxx

  • Hi

    You're definitely not whining and a miserable so and so (and if you were you have every right to do so and this is just the place to do it!). I'm glad to see you are recovering well from your op. When I was first diagnosed I never thought I'd live to see a grandchild and now, 91/2 years later here I am with 3! Believe it or not if you do need more surgery you will cope, it just doesn't feel like it now. It's all a lot to take on board but if you need advice or just somewhere to rant here's the place. You say that you feel like your life is over, it's not you just have a new 'normal. Have you been offered counselling at all. It's definitely worth speaking to someone to help lift you. Sending you a big hug. Kathy xxx

  • Wow such lovely encouraging words thankyou Kathy. I've not really been offered much at all but do have a great support within my family and friends. I'm just so scared about everything at mo im usually such or so I thought a strong person but I seem to be more of a tearful mess ha. I'm hoping I will get a grip soon once I know what the next steps are. this horrific disease took both my parents and I'm sure as hell gonna give it my best shot to fight it. xxx

  • Hi, if you read my profile on here you will see it also took both my mum and dad and it's horrible. Everyone says I am one of the strongest people they know but they haven't seen the gibbering wreck I became at times, curled on my bed crying down the phone to the Samaritans or falling apart when I was due to start chemo etc. You will 'get a grip' once the shock of all this passes and you will find a way to cope. I may be NED but I'm on a trial drug with 12 weekly check up so it never leaves me but to be honest it's what I am used to now. I won't lie, I'd love an hour or even 5 minutes where I could return to the pre-cancer days but that's not to be so, like the rest of the strong ladies here, it's one day at a time, mostly (for me anyway) whinging that I have to get up and go to work, though for me that's also a godsend. You'll get there..... try looking online for baby items to cheer yourself up and look forward to that first cuddle there really is nothing like being a Nana :)

  • Awww thankyou I really appreciate your advice and kind words. My daughter wants me to be there at the birth🙈🙉 and I think it's stressing me out not knowing if I'm going to be going through surgery or what will be happening as I do not want to let her down plus I obviously really want to be part of the miracle. we live in Devon and she lives in Glasgow we can fly there in an hour so as we don't get to see her that often everything is revolving round this it's bad enough timing anytime let alone now. xxx

  • Hello and welcome! It's so frustrating waiting for a diagnosis but you haven't long to wait now and at least you know your medical team are being thorough which should give some comfort. Hopefully even if you do need more surgery it can be timetabled in such a way that you can still attend the birth of your first grandchild.

    It sounds trite but try not to dwell on the results too much over the next few days, they are whatever they are and you will know in less than a week.

    There are a number of ladies on this site who have had temporary stomas, some with permanent ones and they'll be more than willing to share their experiences with you.

    All the best!

  • Thankyou for your comforting words really is making me feel better. Xx

  • Hi shezzer, just wanted to echo the welcome you have already had and although I cannot offer any different advice, I just wanted to say that I hope your recovery from your op continues to go well and one way or another they get to the bottom of all this for you so you know one way or another, what it is you're dealing with (or not)...the worst thing is the not knowing and the waiting! And we have all been there.

    Congratulations too on your soon-to-be grandmother status! A happy Happy time and something to cling onto when all seems lost.

    Thinking of you - let us know how you get on at the Marsden.

    Jemima xx

  • Omg you guys are making me cry I can't niece how thoughtful and kind you all are and can't thank you all enough. Jemima I will let you know and yes I agree it's the waiting that is unbearable I go to bed thinking the worst and wake up thinking the same. As I can't do too much at the moment due to the recent surgery I've been online shopping for my grandsons arrival.😊😚😚. Xxxx

  • Ah what a fabulous way to conveless AND get excited about the new arrival! All great for the soul so focus on that when you're having a dark moment...it will help I promise! Don't forget to treat yourself to the odd sneaky treat online too ☺ xx

  • Yes I've been buying snazzy leggings as that's all I can wear at mo that and lush pj's. xxx

  • That's the spirit ☺jimmy jammies are a girl's best friend! That and gin of course! 😏 Xx

  • Oh god yes and plenty of it ha. xxx

  • Hi luv,

    Welcome,but I know you don't necessarily don't want to be here!

    I had my first grandchild he was 10 months when I had my surgery and my second grandchild is expected in April.

    These are both reasons to live for and should motivate you to doing the best for you so you can be there.

    If you are offered more surgery, I would advocate that and chemo after as I think that offers the best chance for the future.

    I had surgery September 2014 chemo till March 2015 and NED since.

    Hope this is a help,

    Lots of love,

    Carole xxx

  • Hi thankyou yea I will go with surgery if there is no other option I think it's just because I had the hysterectomy 4 weeks ago and was just starting to get/feel better and the thought of doing it all again fills me with dread. I'm going through te angry stage at the monent but all the lovely messages I'm getting on here is helping so much. sounds a bit thick but was us NED. ?. thanks again for your kind words.

    Xxxx

  • I know love, we all get angry! NED is no evidence of disease,or remission,they are a great bunch on here.

    My take on surgery is they take away a bigger part than chemo can do and it gives chemo a better chance.

    I know it is difficult to comprehend going through that again,but if it was offered as a preference,I would go with it 100% but obviously take advice from your team,

    Let us know how you get on,

    Love Cxxx

  • Wow that's amazing so happy for you. I'm hoping to have results next Tuesday just need to get through until then. thanks so much for everything. Xxx

  • If it's any consolation I had two ops relatively back-2-back (as a few have on here) last year (about 6 weeks apart) and absolutely dreaded going under the knife a second time but if anything, I was more prepared for what to expect both before, during and after. I know you'll make the right decision about the surgery...we all would...& nobody likes surgery but we do what we need to to stay alive and kicking! 💪🏻 Xx

  • Hi Shezzer, like you I had a hysterectomy and was told after my lab results came back that I had cancer and would need further surgery to investigate if there was any spread, I was terrified. To say that I was an emotional blithering wreck would be an understatement, my tears alone could have caused a flood. The follow up surgery took place six weeks after the hysterectomy and thank God there was no spread but it was recommended that I have 18 weeks of chemotherapy. I'm now 6 months post chemo and in remission. I'm getting stronger daily, still have days when I'm in a flood of tears for no good reason but overall feeling fine. Hopefully your results will be similar. A grandchild to look forward too is wonderful, being a grandmother is the best spirit lifter. Love and blessings to you xx

  • Wow that's great news for you and thankyou for you encouraging words. yes I have everything crossed. It's good to hear I'm not the only one who cries for no reason some days. just want this nightmare over. xxx

  • Hi Shez- So sorry to hear about your recent surgery and OC possibility. The women here offer great advise and support. Did you have the full cut for surgery? If they need to go back in can they do just a small incision? A lot of women have the micro surgery with several smaller cuts. i had the full top to bottom special but has healed up, my battle scar I guess.

    Stay strong and keep us posted. You will get through this. Congrats on your upcoming birth!

    Carol

  • Hi yes I had the full vertical cut. I agree I'm quite proud of it ha and will not hide it. Thanks for you encouraging words I will keep you posted. xx

  • I had a Hysterectomy when I was 27 years old graded 5 on the neck of my womb.... they left the ovaries in-situe now 47 years later aged 74 years after various symptoms I was surprise when a my G P ordered a C165 blood marker test and. A full Ando/pelic ultra sound The blood test was up slightly and ultra sound showed no mass ....the techno cannot see my right ovary ,even with an internal probe.Plan was to have another blood test marker in 6 months time .I have received a letter today .....telling me not to get concerned but he now wants it done in 3 months. I am a fortunate lady to have my young ,wonderful, caring G P who never gets tired of my questions.... Ask questions ,tell your G P about your concerns /feelings G P `s can make a big difference to waiting times for tests and results , if in doubt about waiting ring your Surgeons secretary ...they are all very helpful ..believe me you are not being a whine ,everyone copes differently with the shock of being told it is cancer .Don`t bottle things up ..cry when you feel like it...you will feel better afterwards .. with a positive outlook you will look back on this last few weeks with smile.

    Hugs and things to you

    Silkysoft

  • Awww wow that's amazing how you've coped so well I hope I have your strength and positivity. Xxx

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