No surgery possible

[Hyacinth1]

Hi,

I fell ill in February 2016 and after seeing numerous GPS, scans, Mri, ultrasounds and referrals to 4 different hospitals I was diagnosed with umbilical hernia. It was only when I couldn't breathe in September and was admitted to hospital and they drained my lungs and abdomen of 23 litres of fluid that they found I had stage 4 peritonial cancer. I have had 4 sessions of chemo and was due to have surgery this month but have been told I can't have it now as although the chemo has dried up my lungs it hasn't dried up my abdomen, and if I have surgery it is likely to make things worse not better. Has anyone else had this happen to them, and is there any advice someone can give me on where to go from here.

Thanks

Hyacinth

[annieH1]

Hi Hyacinth,first of all welcome to the forum .None of us want to be here but you'll find that we're a very supportive group of women.

I'm stage 4 ,inoperable and incurable.I had fluid drained but some was left in my chest cavity and lower abdomen.After 6 sessions of chemo it had all disappeared.6 sessions of Carbo/Taxol is the usual treatment for first line chemo.You should be having two more sessions.Sometimes surgery does make things worse and I'm sure your Onc has weighed up the consequences of surgery for your benefit.xx

[lorraine71-Australia]

Hi Hyacinth, Glad you found us I did not have my abdomen drain even through I was quite bolted when diagnosed I had 6 founds of chemo and as Annie said it all disappeared arfter the 6 rounds, has your oncologist given you a treatment plain?

Try not to worry I know it's easier said but there are treatment options and remember you can always have a second opinion.

Stay in touch with us Take care Lorraine xx

[Karencwillow]

my mum was refused surgery too but her consultant referred her to another prof in london, Prof CF. she works from the hammersmith hospital and specializes in surgery for women that have previously been refused.

[Hyacinth1]

Thanks for your replies everyone, Very supportive. My oncologist just said to carry on with chemo and there are lots to try as they stop working, that's about it. I have to keep having a litre of potassium and a litre of magnesium straight after the chemo as they keep saying I'm low, so that's about 4 litres all in one go which I'm not sure if it is causing more fluid in abdomen as I always feel heaviness in my abdomen afterwards which lasts a while. I have a banana every day and almond can anyone who had this problem also recommend a good tablet or supplement that has worked for them.

Are there many women on here apart from Annie who have not had the option of surgery?

I saw your photo Annie, you look amazing. Lovely photo.

Hyacinth

[Iodjam]

Hi Hyacinth

I was diagnosed last Nov with an inoperable pelvic tumour - squamous cell carcinoma arising from a terratoma of the ovary . Had 6 rounds of carbo/taxol to try to shrink it so they could operate . It did shrink but not enough so underwent 31 rounds of pelvic radiation . My last scan showed a significant difference in size and although I would much prefer to have them cut it out I just have to trust that they can keep it under control for as long as possible . They have said that there’s no point in putting me through an op if they won’t get it all

Imelda

[Hyacinth1 in reply to Iodjam]

Hi Imelda,

I'm glad your tumour has shrunk so much, that is good news

[IrishMollyO]

Hi Hyacinth

Have only just read your post as I havent had a chance to catch up over the past week. You have had such a stressful time with the symptoms and then the diagnosis . I can only tell you my story and trust that it shines a light of hope for you. I was diagnosed with stage 3c high grade serous Primary peritoneal cancer in 2011 . I had 8 liters of fluid removed which in no way compares to the amount you had to contend with. I was told it was inoperable and was treated with 6sessions of Carboplatin/Taxol . I was pronounced NED at the end of treatnent . I remained disease free until 2016 when I had recurrence in my peri aortic lymph nodes . I was treated with Carboplatin and became stable again.

Apart from the nasty surprise of a totally unrelated breast cancer last Dec my PPC appears to be still stable . I have an appointment with my gynae tomorrow who will hopefully confirm that . I will also visit the Breast clinic to check what post mastectomy treatment they have in store for me !

Other women have advised you to seek a second opinion regarding surgery and I would agree with them that you should explore that option. I probably would have done the same had I known more at the time but I look forward rather than back. I just wanted you to know that if having explored the possibility of surgery and it’s still not an option , then a suitable chemo can still work. I wish you all the best for a successful outcome . Take care

XXX💚💕

[Hyacinth1 in reply to IrishMollyO]

Thank you Irish Molly it is good to know that we can survive without surgery, it has been so stressful as most of the posts of the lovely ladies on here have all had surgery and I wasn't that hopeful for myself not being able to have surgery. It has been a very depressing time as I really wanted the surgery. I hope everything goes well for you in the breast clinic and they have good news for you. I have put in for a second opinion. But I'm not sure there is a lot they can do if fluid isn't draining from my abdomen although annieh1 said hers drained after 6 sessions, I have 5th session next Friday and Saturday as I have sensitivity to chemo so have it over 2 days in hospital.

Hyacinth

[IrishMollyO in reply to Hyacinth1]

Hi Hyacinth

I do realize that most of the posts are from women who have had surgery so it can be a bit soul destroying to think you are somehow missing a chance. For me it was a case of “ ignorance is bliss “ . What I didn’t know didnt trouble me at the time. However I have learned that everyone is different. Women have recurrence after surgery too and some like me with no surgery have long remissions. I think as long as your medical team are giving you the best treatment possible and you are happy that they are then you have equal chance.

As for the fluid I hope the remaining treatments gets rid of that for you. I think mine was nearly all drained before chemo and thank goodness it didn’t return. Sometimes I worry it’s back but it’s usually my extra weight that’s the culprit ! I’m hoping my gynae will still say that tomorrow.

Take care and stay hopeful

XXX💚💕

[Crickette]

Hi Hyacinth!

I also have stage 4 peritoneal cancer. I was diagnosed March 1, 2116. I was offered the surgery, but decided against getting it. I had done so much research on the surgery, my findings, and the stories I read helped to make this choice. There seemed to be many problems after the "debulking". I felt my body was already going through enough.

I had 6 rounds of Toxil...one every three weeks. Each time felt a little better. Since then, I have been on "maintenance", taking Avastin every three weeks. Everything has been just fine. My scans show all is quiet, blood work normal and I feel pretty good.

My doctor told me a few weeks ago he felt I had made the right choice for me, by not having the surgery.

Oh Hyacinth, all of these decisions are so difficult. And each one of us has to decide what is the right thing for us to do. I just wanted you to know that not getting the surgery, doesn't mean there is no hope.

I wish you the best. Let's keep in touch with each other!

Best health wishes! Crickette

[Jackie0]

Hi, just read your post and feel sad for your understandable anxiety.many new drugs and treatments available to keep us here, but we have to support our bodies by keeping our spirits up which I hope you will do.

Let us know how you progress

Much love Jackie O xx

[Hyacinth1]

Hi Jackie,

Thanks for your post. It is difficult to keep out of my mind I try and keep positive, there are other lovely ladies on here in the same position and they seem to be okay and have given some lovely support. I hope you are doing well.

Hyacinth

[bquinnx]

Hi Hyacinth. Was more or less in same boat as yourself so can relate 19+ ltrs on diagnosis so infusion lots of drainage. I have stage 4 metastatic OC secondary (Lung) my Onc put me on 3 chemos (taxol/carbo) then I had a bilateral abdomectomy and post surgery had 3 more chemos and it seemed to work for me. I see you cannot have surgery so perhaps maintenance drug post chemo? I had one called Avastin and had no reoccurrance for 3 years still doing well. I was most responsive to hormonal inhibitors as my disease isnt genetic. I wish you the best Hyacinth not on here much but please message me as I only reply to those whose illness I can help with and none of us here are professionals but if we have worn the specific teeshirt...😊

[Hyacinth1 in reply to bquinnx]

Hi,

Did the Taxol/carbo combo work to dry out your acites mine only worked on the lungs. Just had number 6 but no sign of drying out and going for drainage of abdomen again on Tuesday if they can do it, hopefully they can as have been waiting for over a month to get it done. I'm glad you have had a long remission I hope it carries on for a long long time for you even better permanently. Please message me as well.

Hyacinth