Second Opinion for Primary Peritoneal Cancer

Hi Julie

i had a second opinion on my inoperable primary peritoneal cancer in January, I’m still reeling from the rude Aggressive answers  I was given.

i was told with out the consultant even taking my case to an MDT meeting there was not a surgeon the place that would touch me with a barge pole, never mind a scalpel ...... he even banged his hand on the desk ..... talk about crushing me, I was devastated!!!!

i crept back to my constant cap in hand, and went on the carbo / doxyrubicin She was offering, it didn’t work for me so now I’m on Paclitaxel weekly 3 on 1 off, I’m feeling really good so far and CA125. Is dropping slowly.

I have a phone meeting on 9th July and I’m going to push for HIPEC referral as I believe it’s my only option now, I’ve asked before but they would not refer me as it’s not gold standard treatment  the NHS . My back is against the wall now and I’m refusing to give in, wish me luck.

i hope you have a more sympathetic second opinion than I received, don’t give up.

Hi

Thank so much for replying to my post. Looking at your profile and learning of your experiences, I am shocked, sad for you but sadly not at all surprised, as my experiences are very similar.

When I had a rare form of breast cancer 13 years ago it was totally different. I had full faith in my care team, who were lovely, informative, caring and who included me in all their their decisions regarding my treatment. Thankfully I made a full recovery after going on a trail, chemo - surgery - rads. 

There is no connection between my previous cancer and PPC. So I am under the gynecology department. Stupidly I foolishly assumed I would receive the same wonderful care from a similar team. However, as yours, my consultant is abrupt, uncaring in his manner and does not appear to be at all interested in me. I do hope he is different with his curable patients. My specialist nurse part-time, hard to get hold of, doesn't call me back when asked.  

Regarding your second opinion, who did you see? Was it someone recommended and a specialist in PPC?? (just so I know not to ask them!).

I have asked if I can go on any trail, but was told none suitable. I have also been reading about HIPEC so would be interested in to know what they say to you about it. My son is researching who would be the best person for me to get a second opinion from. If he does find one, I will let you know.

I have lived with PPC for more than a year now, it all seems surreal I am on palliative care, as atm I feel fine, apart from a sore hard tummy.

I find best way to control my symptoms is to eat small meals and above all do not allow myself to get congested. I avoid taking pain killers as they immediately make me constipated, which makes it all so much worse. A hard swollen tummy is so uncomfortable, especially at night. In cooler weather I do find a heat mat or hot water bottle really helps to relieve the pain, as it relaxes the muscles. Also, try and go on long walks, as I find this also helps keeping my tummy softer and no so swollen. 

I know it is scary, but get referred to your local Hospice. I was when I asked about best person to speak to about painkillers. My Hospice nurse is amazing. She feels like an ally, she understands what me and my family are going through. She also helps with communication between me and my care team, she is my councilor, a nurse and and friend. Above all she talks to me as a human being and not just another pile of papers.

Good Luck for the 9th.

Take care

Julie

Not really a practical help on second opinions. I suppose I was lucky that the MDT meetings seemed to go in my favour and there was a skilled surgeon within the trust who could operate. I was told at the beginning that my peritoneal cancer was aggressive, diffuse and wide spread and my treatment would be palliative. However the chemo helped a lot in bringing down the CA score and led to an operation and here I am nearly two and a half years later. However I do understand it is not curable and am making the most of a treatment free period (covidallowing).

I can’t speculate on where your cancer is at but please keep on hoping and gently asking questions. The local Macmillan nurse will surely be helpful as is the phones line to MAcmillan themselves.

good luck wx