New diagnosis

Hi, 

I'm sorry you're going through this. My husband had a similar experience with OC. First diagnosed as stage 3, locally advanced. Unfortunately PET found one spot on liver which MRI confirmed to be metastasis. Since it's one spot only, our oncologist told us that it's something called "oligometastasis" and there's still a possibility to get cured and go through surgery. He's receiving FOLFOX chemo right now and if the disease stays stable for the next few months, they want to offer him a surgery especially because he's young and healthy. 

Since you mentioned one distant lymph node only maybe that can qualify as oligometastasis as well. Anyway, I would try to get a second opinion and an oncologist that's willing to offer more aggressive treatment. 

Best of luck

Hi Sam, 

I’m very sorry you and your partner are going through this, it truly is the most horrible feeling to be told that you can be cured with surgery and then be told not. We are currently on the same journey with my dad. He was diagnosed in October 23 and was told “we can cure this with an operation” after his CT scan. He then underwent a PET scan which highlighted a hotspot in his supraclavicular lymph node, which was confirmed to be cancerous after biopsy. To then be told palliative care only really knocks the wind out of your sails and you feel like all hope is lost. We have been there so completely understand how difficult it is. 

We had an appointment with Professor Emanuel in Newcastle, one with Professor Chau at the Royal Marsden in London, and one with Professor Mansoor in Manchester. All were of the same opinion, no surgery. If you can get an appointment with Professor Mansoor in Manchester please do, he is an incredible man. He is in regular contact with my dad’s local oncologist and despite the no surgery option, really does lift spirits and give hope. 

My dad has just finished his 6 rounds of Capox chemotherapy and has been somewhat well throughout (with the odd day of feeling crappy). At his first scan after 3 rounds, his lymph node was “normal”. He has just had another scan at the end of his treatment, which we are waiting the results of. He is now eating and drinking as normal and is somewhat well and living life as normal. 

Lots of love and big hugs sent to the both of you as you begin this horrible journey. Do reach out on here, there are some incredible inspirational stories to read along your way. 

Thank you so much for responding. I will certainly look up Poffessor Monsoor and try and arrange an appointment. 

Hi Mochi, 

if you don’t mind me asking, how old is your husband and where is he receiving his treatment please? 

Hi machine, could you tell me were you are based? Thank you.

Hi,

Can I ask how you went about asking for your second opinions please? I would really like to do this for my dad. Did you just call and ask? 

Many thanks 

Kayleigh x

he's 37 and he's currently receiving treatment in Texas. McKenzie is our surgical oncologist and he told us that he's willing to remove cancer as long as it has metastasized to a few places. Couple of his patients had parts of their livers removed and they were cancer free afterwards. I understand that my reply might be disappointing because I'm not based in UK like the majority on this forum. But I know that doctors here don't treat just US citizens. As a matter of fact, I'm not a US citizen and I still had no problem with appointments/treatment. So maybe this is an option for you too. 

One more piece of advice, only around 20% of people with this type of cancer are eligible for immunotherapy. I wish doctors were more transparent about this. There is a fallback immunotherapy drug in case a patient isn't eligible for the standard opdivo/keytruda/herceptin drugs. If you want I can share the name of the fallback drug.

Best of luck <3

Yes please if you don't mind sharing. My dad unfortunately sits in the 80% bracket and can't have immunotherapy. Unfortunately no surgery has also been offered and he is just having chemotherapy. We hope daily that something else comes to light. 

It seems like the U.S do treat these types of cancer better than the UK. 

Good luck with your journey. 

Kayleigh x

Hi. Thank you so much for this. I really appreciate your response. 

Hi Kayleigh, we initially contacted Professor Emanuel in Newcastle via his private secretary (we live in Doncaster). The secretary requested all of my dad’s records from his local trust and he was discussed at the Newcastle MDT meeting. We then had a conference call with the professor himself. Next we went to see Professor Chau at The Royal Marsden in London, this was arranged privately via his secretary, who again requested all of my dads scans etc. My dad then travelled down there for a consultation with him. Finally we sought out Professor Mansoor at The Christie in Manchester, he has been incredible and has seen my dad twice now alongside his local oncology team. I hope this helps. In answer to did we just call and ask, the answer is yes but also via email. The private secretary’s are incredibly helpful