Continuing my PPC journey and getting a second opinion

Hi all you lovely ladies. For those of you who have read my previous posts this is my latest news. I just realised that today Fr 13th is 5 years to the day that I got a call from my GP telling me to get myself to the nearest hospital as my blood test was abnormal. Up to that I didn't know that she suspected something serious was amiss . My swollen tummy was not sudden weight gain but I thought it was. My painful tummy was not the constipation caused by the IBS I was always being told I had.

I had the usual 6 months of carboplatin and taxol and was pronounced disease free at the end of treatment and up to Mar of this year when I was told that a CT scan showed my periaortic lymph nodes were swollen. I decided after much thought and agonising to ask for a review of all my scans in a different hospital. I was worried that having seen mostly from this site that most women were having debulking surgery , that maybe I should have been offered that too. I am so thankful to the person who made this review possible. She did say that for me drastic surgery was unnecessary and that I responded very well to chemo and had got a very long time disease free. She saw no reason why in the future I should not respond in the same way to the same treatment.

I don't need to start treatment immediately as nodes are not greatly swollen so it will be a scan around July and close monitoring a after that. In the meantime I will try to enjoy the summer and the 3 weddings I have been invited to. I also have one in Sep but she wouldn't guarantee a chemo free period then !

Now instead of sitting around feeling sorry for myself I need encouragement to shift the weight that has crept up and up over the past five years. To,add insult to injury this blooming disease caused me to gain weight rather than lose it. My Nutribullet will have to get a lot more use. I feel if I can lose a bit of weight that exercise and walking will be easier .

Thank you all you lovely ladies for your advice and encouragement since I joined this site. Sometimes that was the only thing that kept me going as when I was in trouble and stressed you rallied round. I shall never forget those kindnesses . Take care

XXX

33 Replies

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  • Have a lovely summer Molly. Enjoy all the fun weddings. Dont loose too much weight, it will buffer you when you have the chemo side effects. Sounds like you have a brilliant attitude and have it all sorted. Luck to you xxx

  • Dear Marianna

    I am only getting to reply to your kind words now . Since I put up my post late one night I have had many a meltdown ! I started to overthink everything again but on this beautiful sunny day I am back to an optimistic mood so I hope it lasts . I will see my own oncologist this week and then I will try to banish all thoughts of this pest until my next scan in July. Hope all is going well for you. Take care.

    XXX

  • Hi MollyO. I am so glad that at long last you got everything sorted , you have been through a lot over the last few months. I wouldn't worry to much about losing weight ,you will surprise yourself by just going on a gentle walk everyday the pounds will shift but not to many as if you have to have chemo later in the year the little extra weight helps .I met you last year at the Patients Day in Dublin and you are not an overly large lady. It is great you have a summer of weddings to look forward to. Kittie

  • Dear Kittie

    We did meet as we were at the same table I think .

    I wasn't sure you were the girl from the forum or not. You have been having

    a rough time recently so I hope you are getting back to yourself. Thanks for your reassurance about the weight . I was never overweight but being that way now quite depresses me. I do know that oncologists prefer you nice and plump as they can give you a higher dose. That is no excuse for me since I finished chemo 5 years ago ! I took your advice earlier and went for a long walk. Well longish ! Will keep you updated. Take care

    XXX

  • Yes that was me my sister was with me . I am finding the chemo a lot tougher this time round because I was spoiled the last two times I had it because I had it weekly this time it's all on the one day .I have cycle two on Wednesday but I do realise how lucky I am in the doctor been on the ball and even though my CA 125 marker was only 77 I was admitted straight away. Kittie

  • Hi, you have had a really good result from no major surgery and chemo. I do hope when its time to start the next lot of chemo, you will achieve the same. I too have put on a lot nof weight since my diagnosis. I tried ever so hard and managed to lose a stone earlier this year but then had to go back on chemo and take additional steroids this time and that stone has hone back on. One fight at a time though for me. I'll try and deal vwith iut afterwards.

    3 weddings this summer. That was me last summer. I enjoyed them all. It is so nice to see a young couple very much in love take their wedding vows. Shopping for outfits tends to be the problem when your carrying a bit of weight. I do hope you get something nice. Enjoy your summer and the weddings. Try to remain positive on watch and wait, I was on it from August 14 until February 16.

    Ann xo

  • Dear Ann

    Sorry I am only getting to reply to you now as I have been entertaining a visitor since I returned . You are obviously more disciplined than me when you managed to lose so much. You are also more patient as your watch and wait seems such a long time. I jumped the gun with a private appt and scan when I was only due my scheduled appt this week . My treatment will probably be no earlier than if I waited for it . I will just have to learn not to be so impatient but it is so hard when you imagine this monster growing . Anyway I went for a nice walk with my visitor on this beautiful sunny day and after my final meeting with my oncologist before the summer I will try to put PPC into a box until I need to take it out again . Take care.

    XXX

  • Ah it sounds as if you've got a lively rime coming up, enjoy them and have some goo days out shopping for an outfit to.

    So pleased you've had a good response from your treatment, stay positive!

    I know what you mean about gaining weight, I lost quite a bit at the start of treatment last year and then started to put it on and am now a stone heavier than I want to be grrrrrr!!! But I will concentrate first on my treatment then worry about my weight another time.

    Best wishes

    Xxx

  • I know KM. Thanks for your encouraging words. I went to bed last night feeling optimistic and woke up this morning with those creeping doubts raising their ugly heads again. I now need to clear my head of them and may just put up another post looking for words of wisdom. I am also seeing my own oncologist next week. After that I will be a good girl and stay quiet and only write helpful replies to other more needy people . Take care

    XXX

  • We all have days where we are feeling emotional drained and because of everything you are going through its only normal you get days that aren't so good, you will get through it. Take care xx

  • Hi Molly O, yes get out the Nutribullet, no business on its own feeling lonely in a cupboard. But make sure you do green juicing like celery, cucumber, green apples and ginger. I would add what ever is on offer in Aldi as well ie mangoes or pineapples when they are there. I would also add spinach, watercress and rocket miss or superfood mix from salad section with kale. It is really not bad. Enjoy the next few months, and your weddings. Dont worry too much about weight as long as you eat healthily and exercise. My exercise is gone down the drain at the moment and the dogs really are happy with that because they are lazy dogs. So I have to work on that now again that the weather has changed for the better down here

  • Suzuki

    Thanks for the great tips . You may have already read my reply to Ann so I am probably frustrating everyone with my " doubting Thomas " replies. I just need to know there is someone else like me out there. I know I should count myself lucky to have got this far without an op so am I just a freak of nature? As I said i will now put on that smile and embrace this beautiful day.

    XXX

  • No you are not, it is normal to have doubts and questions but remember they are only words that come into our heads without any great basis really. I learned that at Mindfulness. I hope you have a nice walk and it will do you good to get out and away in the fresh air

  • Hi Ann

    I put up the post late last night and I know that since I spoke to the second consultant I have tried really hard to see the glass half full. I still can't help thinking about why an operation was never on offer expecially since everyone here has had one. I would love to hear from someone who hasn't and just to stop that nagging feeling I think I will put up a post asking if there is anyone like me out there. That and the various pains such as the stitch like one in my left side ,back pain and the one over both kidneys and general fatigue and weakness was not attributed to Cancer. Then why are they there or should I be going to my GP ? Sorry Ann that I seem to be so pessimistic and I know I will now be expected to smile and go on . I really want to put it behind me and get my carefree life back again and really enjoy those weddings . I hope I haven't already fallen at the first hurdle of my watch and wait journey ! I went to bed way too late with a new outlook and woke up with the old one . Help ! Thank goodness I have already got the outfits . I am now going to put on my happy face , have a healthy breakfast and take a walk on this beautiful sunny day. Thanks for reading this long reply and I hope you didn't fall asleep half way through. Maybe everyone has the same up and down feelings !

    XXX

  • Hi MollyO - I haven't had surgery either. They said I was an excellent responder to chemo and that my quality of life would be better without risky surgery. I am grade 3C with mets in peritoneum, so the cancer is quite diffuse with some cells in risky places near bowel. I look at the positives that chemo and Avastin have got my CA 125 down from 13,500 to 20 and that I haven't risked bowel complications, but sometimes I do wonder why so many other people have surgery as routine. I have a good quality of life and manage to keep positive most of the time, but I do have my downs like you and wonder where it's all heading - but I guess that's normal. Enjoy the summer and make the most of the good times :)

  • Hi Harpist. You are the very person I wanted to hear from as I was beginning to feel all alone in a world of surgery. Don't get me wrong. I am a real wuss and the thought of surgery would make me curl up and die anyway but if I thought it would save my life I would do it. You are so right when you say that the downs will happen sometimes despite the efforts at positivity. Please stay in touch . When were you diagnosed ? I can't help thinking of 5 years ago this week when I ended up in hospital for 8 days. The Queen and Barak Obama both visited Ireland on the same week. Now I must look forward. Thank you so much for your words of encouragement. Your reply cheered me up so much. Bless you.

    XXX

  • Hi Mollly - so glad I could help. In answer to your question, I first got ill last September with digestive problems, bloating etc and was diagnosed at the end of October. In August I'd been climbing hills and had no idea what was coming, though I had lost a bit of weight. By November I was only eating soup and yogurt, but as soon as I started chemo I actually began to feel better! Yes, there were a few side effects, but I got my appetite back and was out walking and seeing my friends. Now I feel pretty normal most of the time, just occasionally anxious because I'm not sure where I'm heading. I'm doing all I can to maximise my chances and divert my attention - going on a Penny Brohn 'living with the impact of cancer' course in June and I foresee my husband buying a Nutribullet for my birthday :) Regarding the surgery thing, my cousin (also diagnosed with OC last year) had emergency surgery for a bowel perforation a week after her hysterectomy - she has a temporary stoma and is awaiting reveresal op. So I think if I have bowel risks I'm better following the onc's advice. Anyway, best of luck - it's a sunny day, let's go and seize it! Keep in touch. xx

  • Thank you so much

    Sorry for my late reply but I arrived home at the same time as a visitor. I think we have lots in common with regard response to treatment. I had felt so dreadful before I was diagnosed that chemo really made me feel better from the beginning. That is even despite the side effects like achy joints, mouth ulcers etc. I suppose now my real problems are recognising recurrence as my nurse always just said " you'll know " when I asked for symptoms to look out for. After 5 years that really irritated me. Now that I know it's back as a result of making a private appt which in turn got me a scan I wonder if they think I should have just left it. My original scheduled 6 month appt was last week so I would be just starting down the road of scans etc. it's all making my head spin.

    Thank God that like you I didn't have surgery. Now I will just stop moaning and enjoy what this lovely weather has to offer. A summer of weddings beckons and they don't need a gloomy guest. I just went for a lovely walk in the sun with my guest earlier. Take care and I will keep in touch too.

    XXX

  • Thanks! We'll crack it. Cancer is always going to be the elephant in the room - my husband tells me to 'shrink the elephant' when I'm feeling down! I quite like that image :)

  • Does your husband know the answer to " how do you eat and elephant ? " The answer is " bit by bit " ! That is how we must tackle our elephant .

    XXX

  • Hi, only seeing your post now, sorry. I see you've had a reply about no surgery from Harpist. That's good. I suppose we are all individuals and there is no one size fits all treatment. I had surgery prior to any chemo, but I know others who have had chemo, surgery chemo and now you and Harpist who have had no surgery, just chemo.

    You're right, messing with the bowel during surgery causes it to misbehave lol.

    We all have days when we are lower than other days. I've not had a particularly good week this week, mainly with that awful queasy feeling which I have never really been bothered about with chemo before. I'm wondering if it us the stool softener that they prescribed for me that's causing it! I don't know but I do know I have to snap out of this low mood pretty darn soon.

    On a brighter note, Katherine, my eldest granddaughter with be One on Tuesday. I bought her a lovely little outfit from Next and an adorable little Rag Doll. I made her a Birthday Card this evening too (I have Craft Artist 2) for my computer. That occupied me for a while

    Be kind to yourself. Ann x

  • Hi Ann

    Had no time to reply after I read yours early this morning as had to leave and only back now. I do hope you are feeling better since you wrote it. Of all the stressful symptoms this disease and treatment brings on I think bowel and digestive problems are at the top.. My nurse will sometimes refer to it as my " IBS" and I feel like screaming. I hope your doctor is understanding about this. After all it is one of the symptoms that should alert us to getting checked in the first place. I tried to stop laxitives after I forgot to bring them with me when I was away for a weekend a few weeks ago. I didn't feel too bad but I guess when I am back on treatment I will have to take them.

    I love your description of what you have done for your granddaughter.

    This is what life is all about and we must all try to push that monster away every morning and only face him when we need to. I know that is easier said than done . I just have to see my oncologist one more time this week and then I hope to be able to look forward to the summer. I wish there was something I could say to cheer you up. I do know that you are wonderful to think of replying to me when you are not feeling great.. You deserve a pat on the back and a very big hug.

    XXX

  • Ah MollyO, thank you, you are so kind. My queasiness has gone, yippee lol. Thank goodness. I'm doing OK. Thanks again. Ann x

  • I'm so glad you get to enjoy summer treatment free, enjoy the weddings xx

  • Thank you so much Emalou. I am trying to banish those worrying thoughts that made a home in my head since I had my scan in early Mar. I am getting there and just need to believe that I still have hope. I just have to see my own oncologist this week and then the first wedding is at the weekend ! Replies like yours and all the others mean so much . Take care and enjoy your own summer.

    XXX

  • Hey Molly!

    I have been reading the posts over the last few days and just wanted to say I hope you are OK! It's not easy and hard not to get down about it. I look out the window in the morning now and am so glad that I am still here.........its so much easier to do that when the weather is like it has been for the last few days!!! My thoughts are with you!!

    Onwards and Upwards!!!

    Dx

  • Thanks D

    I am really trying to live in the moment and get on with it. I guess once I have seen my own oncologist this week I can put it behind me for a few months until my next scan . Thanks for your positive words. We are all lucky to be still here thank God. Keep on smiling !

    XXX

  • I had a recurrence last July and didn't start treatment until September. I wanted the summer off to live a bit and spend time with my family and we also had a safari in South Africa booked so nothing was getting in the way of that. My Onc was happy enough for me to do this so I tristed him and so glad I did as I had an amazing summer and managed to squeeze in 3 holidays.

    I used to think I was the only person with cancer to pile on the weight but it seems pretty common. I've spoke to Onc about it and he said my weight is the least of my worries and as long as I'm eating well and getting some exercise not to think about it. I do plan on trying to get a stone off. We will see how that goes lol

    Xo

  • Thanks Julie

    I always did think that oncologist didn't mind us being on the plump side as we would be able to tolerate higher doses of chemo. However I was given a copy of a letter where I was referred to as overweight ! I really do think it is this disease and I did read that because your food wasn't digested properly it had this effect. Today my energy is even lower than normal . I went to my psychologist yesterday as I had some issues with oncologist at my last appointment . She was great but right now I think I need a live in psychologist ! Your posts really cheer me up with your positivity . My brother is now talking about the 5 2 plan which I gather means practically starving fir 2 days so I don't think that is to be recommended for us special women . Take care and thanks for lifting me up. Love

    XXX

  • Molly I'm sorry I came on to your profile to see how you were doing and read this. I must have missed your reply to mine. I've had a crazy couple of months with holidays and hospital appointments so haven't been on regularly.

    How are you feeling ? Hopefully you've been managing well on watch and wait.

    I still haven't managed to lose a pound never mind a stone yet ! I did order a battery for my scales this week so a tiny bit of progress 😀 My 12 year old started to weigh herself last year and was getting too caught up on what the scales said so I removed the battery. She still lost weight and I gained even more so scales are back in action.

    Hugs xo

  • Hi Julie

    Lovely to hear from you. I don't worry when I get no reply as I know everyone is dealing with their own situation. I had a scan last Tue and will be given the results on thu so lots of prayers and candles requested. My GP did my CA125 and phoned me with results same day as scan. It has doubled since last time to 140. Strangely it did not make me anxious as all oncologists seem to think. I just prefer to know and I think those of us who want to know should be told. I am not looking forward to the oncology appt as both my nurse and oncologist are tyrants to me.

    You seem to have had a busy few months. I also was up to my eyes with three weddings and another one to come. My black joke is " I hope it's not going to be 4 weddings and a funeral ! " . Anyway Julie I will let you know how it goes. I was thinking of putting up a general post with some questions but haven't got round to it. If it's watch and wait that is what I will do provided they explain exactly the reasons why .

    I do hope all is going well with you . Take care. Lots of love

    XXX

  • My Oncologst explained the numbers better to me at recurrence. At the start mine were over 3000 but at recurrence were only 40. He said it's the graph they look at and because mine were at 8 then had more than tripled and I had felt twinges they checked and it was back. I went on watch and wait for 3 months as I wanted a break over the summer. I did have the comfort in that he told me if I changed my mind to call him and we could start treatment straight away at any time. I think this reassured me and let me enjoy the summer and get kids back to school before back on the groovy train.

    I love the black jokes we should never lose our sense of humour

    I will keep you in my prayers - I have a book ! The power in prayer 🙏🏻

    Best of luck for Thursday and you will likely get the best answers or support you need on here. I've never come across so many great women.

    Love and hugs xo

  • Thanks Julie

    I will keep you posted. My book to start each day is " Uplifting thoughts for the day " I read it before I go to bed and beforeI get up,in the morning. It puts me in a positive frame of mind . It has a short little prayer. Tomorrows one I really like. It says " if you're happy please notify your face ! The prayer says " Dear God. , help me to be a sign of your love and joy to others " . I think it is very apt after the upset we have all felt these past few days. We will look all look forward to a new day and put the past behind us. Love.

    XXX

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