📀 The PPC lymph node lady blues !

[IrishMollyO]

Today I finally got to get my scan results . I had a 2 hour wait and then met a lovely oncologist I had never met before. She told me that my nodes had got bigger since Mar so I would need more chemo. She asked me if I have any major events coming up so I told her that I had a family wedding in Sep. I also hoped for a small holiday just after the wedding . The ball was then back in my court so I have until next week to think about it and they will speak to my original oncologist in the meantime. I really thought they would be able to judge having noted the nodes size in mar and knowing what they are now. Or am I talking through my hat ? Surely they have enough experience of OC and PPC to figure it out ! They just said everyone is different. Am I just being cynical or is that how vague this illness is ? Has anyone else some words of wisdom on this one ? Would be grateful for your thoughts .

XXX

[Dollysmum]

Hi Molly,

I don't think they like to commit themselves. How much bigger?

Debs xx

[IrishMollyO]

Hi Debs

Do you know that I never asked that question and it probably was the most logical thing to do. I thought of it later and I could have kicked myself. It would definitely have a bearing on whether I should delay treatment until Sep. I will certainly ask them when i ring next week. They just said larger and when I questioned that she just said large enough to think about chemo. I probably should get measurements from Mar compared to last week and get expert advice then. Just off to bed now after a stressful day .

XXX

[annieH1]

Hi MollyO, sorry to hear your nodes have increased in size,mine do that regularly! As I said before I always get a copy of my scan so that I can look at my previous one and know what's what.When I look back at my original scan there is slight improvement.

I think I would ask the onc or Liason nurse their advice after all they are qualified to say whether you can put treatment off until your hols are over.My treatment was postponed last January as my onc thought 4 days in the sun would benefit my health before start of treatment.

Having said all that ,you are doing so well for the past yr,you've really taken it on and kicked its butt and you will do it again,it's all down to managing the illness and that will be sorted like before.I know it's a bugger but your armed with a lot more information now that you were at diagnosis which gives you power over the ppc.Hope you enjoy the weekend,I'm taking all the family to the seaside for the weekend.x

[IrishMollyO in reply to annieH1]

Thanks Annie

I am sure asking for a copy of my scan is unheard of with my particular Prof. He wasn't there yesterday and the oncologist standing in for him and the liason nurse would not give me any opinion or advice on waiting. They have left it totally up to me to make a decision . I asked them in different ways but they were noncommittal . I guess they don't want me to accuse them of bad advice if I do delay and it spreads . I thought they would be able to judge how fast or slow they were growing which would help my decision. I am going to ring the nurse today and ask her if she can at least answer that one.

Today I am not so brave about waiting and maybe I should explore an earlier holiday. I like the sound of your oncologist who appreciates the benefits of a holiday. I have learnt a lot over the past year and mainly from women like yourself . The trouble is I think my team prefer if I remained in blissful ignorance !

Enjoy your own weekend and I hope the sun shines for you

XXX

[Leeds2015]

My understanding is that once a reoccurence happens, it makes no difference to overall survival rates if you have chemo sooner or put it off. If you have is sooner, you run the risk of getting through chemo options more quickly, Howe er if you put it off then there is the risk of it spreading to organs etc. I went down the route of I am feeling well and therefore why start hrmo too early. I am platinum resistant so the longer I can put it off then I have a chance of reversing the platinum resistance. So no chemo over the summer and head back to onc in September x

[IrishMollyO]

Thanks for your reply. I really appreciate reading other people's experiences. It helps me to make an informed decision . I am going to ring my liason nurse today and ask her a few more questions which I hope she will answer . Both herself and the oncologist were very noncommittal yesterday . Maybe they are afraid of litigation which would be the last thing on my mind ! I am not so brave today about delaying it as I was yesterday when I asked the question. I suppose I am a bit annoyed at having to make the choice without them backing me up. Then again maybe it's daft of me to expect any answers with this blooming disease . I am now going to try and have a normal day and try to forget it for the bank holiday weekend. Take care and enjoy your well deserved summer break.

XXX

[couls in reply to IrishMollyO]

Hi my ca125 started to rise in March this year it went from 20 to 565 at the beginning of June. I also have an enlarged lymph node in my neck and the scan showed it was back between my kidney and liver. It was at that point I said I needed to be back on chemo. Which he agreed. Got the results of my ca125 after the first chemo and its come down by 200 and the lymph node has shrunk by half. So I'm glad I didn't wait any longer. The thing is with this disease we just don't know how fast it will grow. Love Val. X

[IrishMollyO in reply to couls]

Dear Val

Thank you so much for getting back to me. I thought about this all day Fri and talked to my family and friends and of course got some great advice from the lovely ladies here. On Sat morning I woke up and knew with certainty that I must not delay treatment. I'm not even sure why I hesitated

. I think I was convinced before I spoke to them that they would not have got much larger and that they would suggest delaying and I had a few days earlier started planning a sun holiday. You know the old saying " if you want to make God laugh start making plans ! "I was therefore disappointed like a little child would be and so when they asked me if I had any engagements coming up I mentioned a family wedding and the holiday. That's when they told me to think about it and get back to them next week . I am afraid I will confuse and astound my oncologist who wasn't there that day .

I really appreciate you telling me your own story Val and I am so happy for you that everything is going in the right direction for you. You certainly have shown me that my decision is the right one. I don't know where I heard or read this statement that has been in my mind these past few days . It says " your lymph nodes are the gateway to the rest of your body "'. I certainly don't want to leave any gate open that will let that monster disease through again ! Take care and thanks again. It is really late so I should be saying good morning instead of good night ! I wish you success in your own treatment .

XXX

[couls in reply to IrishMollyO]

Hi again. Lol. I'm so glad you have decided to start treatment again. I know how disappointing it is when you have plans. I had been looking forward to my annual family holiday in Majorca and on the day everyone flew off I was starting my second chemo. But I'm glad I made that choice as you said I'm not somebody who wants to wait while it's gone to a few more places. I hope you are having a lay in this morning it's so hard to sleep when everything is going through your mind. I do think you will feel better in yourself now that you have made that decision. I know I did. I'm thinking of it as just another blip in life to get through and hope to be back at work by Christmas . Take care Val. X

[IrishMollyO in reply to couls]

Thank you Val and to all the lovely ladies who helped me make a decision . Looking back it should have been a no brainer but I am so bad at over thinking everything . I did get up early as I find lying in bed just makes me think too much. I have already done my shopping in the rain and am contemplating a big de cluttering operation as I won't have energy when treatment starts. I will start with the freezer as its my plan A to cook meals in advance ! I read somewhere during my first treatment to look at it as a job you have to do so the more organised you are the better. Now all I have to do is ring Oncology tomorrow and hope they haven't crossed me off their list for this month. Take care

XXX

[harpist_UK in reply to IrishMollyO]

Good luck with your treatment MollyO - will be thinking of you. As my CA125 has now risen to 600 I may finish up on the same path as you - they will know better once they've scanned me. Tough times, but on we go!

[IrishMollyO in reply to harpist_UK]

Thank you so much. Good luck with your scan. I hope that it doesn't show up anything major . We will march on my dear. I always visualise you as an angelic lady gently playing a harp and looking very serene. We will keep in touch. Take care .

XXX

[harpist_UK in reply to IrishMollyO]

Well, my new pic here is my hand on the harp! I guess playing this instrument does calm you down, but not sure if I look angelic! You made me smile. Thank you xx

[Hidden]

HI MollyO, I have normally gone with the flow and left if to my oncologist to decide whether to watch and wait or have treatment. I find it a little strange they were non commital but perhaps they meant they would work the treatment around your family wedding. You can defer a treatment for a week or so if dates clash, it doesnt make a lot of difference. Then again we are into August now so if its just two months you are talking about well, I couldnt see a problem to be honest if you wanted to hold off. By comparing scans they should have had an idea of how slow or fast this recurrence is. I do hope you got on to the gynae liason nurse today and got more information. As you say put it to one side for the weekend and then think about it further and make a decision. I hope this gives you food for though and I wish you a lovely weekend too.

[IrishMollyO]

Thank you so much Suzuki for getting back to me. Just reading your reply now and it's great to have another opinion . I have been thinking a lot about yesterday and I put my question to them in more ways than one. I asked if I could potentially be putting myself in danger by delaying or could they judge by other cases if it was safe to wait. Each time the ball was put back in my court. The answers ranged from everyone is different and there is no way of telling to telling me that the decision is entirely mine. That really is being caught between a rock and a hard place. Maybe they are afraid I will sue them if I wait on their advice and it returns ! I decided against ringing the nurse today as she has upset me before and I wanted to think about it for the weekend . I am a bit too fragile today for a confrontation . It's the bank holiday so I will have 3 whole days to think and more if I want.

Have a lovely weekend and it looks like maybe, just maybe the sun might possibly shine ! Take care

XXX

[HogwartsDK]

Hey Molly!

Thinking of you and I hope you are enjoying your bank holiday weekend!!!

Dx

[IrishMollyO]

Thanks D

It's lovely weather of course . For ducks only ! I have just done my shopping and had a naughty fry up when I got home. As I will have to be good from now on I decided to treat myself . Hope you are having a good one.

XXX