Hi everyone

[SEckett]

I have just seen the surgeon who carried out my surgery he said he got the bulk of disease but I have still got microscopic bits of the disease m. I said can I go into remission. He doesn’t believe in remission. I said that I had read about ladies in remission and I was told if the scans don’t show any disease then they class this as remission but scans do not show up microscopic bits of disease and that people call it remission after they have finished treatment and on maintenance drugs. He also said not to make any long term plans. He did say eat what you want and enjoy your life. I am devastated. Sheenagh. Xx

[rosebine]

Bit negative your surgeon ! The surgeon cant get disease he cant see, that is why you have mop up chemo. I assume you are getting this? The scans cant pick up microscopic disease, and maybe thats why its sometimes called NED no evidence of disease rather than remission. Remission is a term widely used though by the Oncology bods so there must be some truth in it ! Hope your recovery goes well.

[SEckett in reply to rosebine]

Hi,

I have two more chemotherapy’s then I will be put on Avastin. My cns said prefer to use the term suppressed the cancer rather than remission. Sheenagh

[Ruebacelle in reply to SEckett]

This is good avastin works Stay strong stay positive laugh eat well snuggle with pets and enjoy your life

[Newbie_2020]

Sheenagh, try and not to get discouraged by this.

It looks like you've had a clash of semantics with the surgeon.

Many oncologists and surgeons dealing with ovarian cancer don't use the word "remission", perhaps for fear of giving false hope.

Unlike patients with leukemia who can go into a "complete remission," our most privileged club of advanced ovarian cancer doesn't go into this type of remission.

In the best cases, the CT scan may show NED, the terminology preferred by our oncologists, which means our cancer is not visible "radiologically". This also means that the monster is dormant and may wake up at any time and can all of sudden become resistant.

In spite of all of this and his comment about long term plans, many on here are to tell the tale about how they have proved the medics to be wrong.

Keep strong, take it one day at a time and for now focus on getting through your adjuvant treatment and let's pray that it will go very well.

[SEckett in reply to Newbie_2020]

Hi,

Thank you for your supportive message it means a lot to me. Sheenagh xx

[SASSY196]

Hi Sheenagh,

It's rubbish isn't it? I am sorry you didn't get the description of NED but agree with other ladies. Just try to take one day at a time, live in the moment as much as possible and enjoy the things that make you happy. Xxx

[SEckett in reply to SASSY196]

Hi Sassy196

The two hospitals I go between for Ovarian Cancer don’t use the terms like remission. My surgeon and cns like to use term the cancer is suppressed rather than ned he says this is because the scans can’t pick up the microscopic bits of cancer so a lot of oncologists use the term ned but he won’t use those terms. When I came out I felt awful. Sheenagh

[SASSY196 in reply to SEckett]

I'm so sorry you felt like that. I am going to tell you how I am with information, my thoughts - which doesn't suit everyone. I find uncertainty, very hard. For me a sense of false hope is harder than a hard truth. I have been with two oncologists, my last one couldn't bear to say things as they are and so gave me only very positive information, almost ridiculously so. My new oncologist is direct and straight, she tells me it as it is which can be a hard hear. She talks in an evidence based way which suits me. I was told I was NED by first oncology team ( not surgeon , COVID meant followup cancelled with him , but for me cancer came back relatively quickly, I think I would have found it easier to take if I had heard it as you heard it. I would have been devastated as you were at start but at least I could move forward with an accurate expectation. I know that's not the same for eveyone. I also don't consider I battle or fight cancer, I have accepted that I have to live with it. Before I did this I was exhausting myself but now I feel much more at peace. Of course this isn't for everyone and I think there will come a time when I struggle to remain accepting but for now it means I can mainly enjoy day to day activities. I hope that for you the *****er stays away

[SEckett in reply to SASSY196]

Hi Sassy196

They use terms such as the cancer is dormant. So they said my cancer would lay dormant and that there were lots of treatment out there to explore. The cns said things were going in the right direction so far. I suppose I got sad because before the surgery he called me and said he could cure the cancer but it could go into remission. Then I see him and he says he doesn’t believe in the word remission and would rather use the word dormant. Sheenagh xx

[SEckett in reply to SEckett]

Hi,

He said he could not cure the cancer. Sorry that’s what it should of said. Sheenagh

[SASSY196 in reply to SEckett]

So it sounds as though he gave you false hope and then shattered it. No wonder you feel devastated but It does sound like things are as good as they can be. It's a rubbish blow to get cancer and you/ I are relatively young. I was 53 at diagnosis and 55 now. You are though in a good position and there are lots of example here of people who have had no symptoms etc for years. Easier said than done but try to let go of the words and focus on enjoying your time. What are the pleasures/ happy things in your life?

[Rankij11 in reply to SASSY196]

Well said- I’m with you on this . Prefer to know what’s what . In life , you can aim for long term plans , but there’s never a guarantee. Carpe diem . Although I guess it’s easier to say this when you are knocking on a bit ! Jennifer

[DinkyAnnecy]

Good Morning! I found this article helpful. I am stage 3B from New York survivornet.com/author/dr-p...

[SEckett in reply to DinkyAnnecy]

Hi DinkyAnnecy

I have read the article. Thank you. Xx

[Caleda4]

I had endometrial cancer 6 years ago,when I had a hysterectomy etc. It was found that I had high grade serous in one fallopian tube. I was treated with carbo /taxol, and then last year the high grade serous type returned on my omentum. Prior to getting further treatment i had a colonoscopy where 4 polyps were found but they were benign thankfully. However the Professor who was in charge of the colonoscopy organised a scan which then showed the cancer on the omentum. I was called for a very quick app. with him,and he promptly informed me that chemo would not work and that was it basically. Anyway following an MDT meeting i then saw an Oncologist and i told her what had been said. Her response to that was/ We will just have to prove him wrong. So i had carbo/gemsar last year which finished in October 2020,and then i was eventually put on to a parp inhibitor,which i am still taking and i am still here to tell the tale,and i am 76.So what i am trying to say is stay strong, keep positive,which I know is difficult,but it really is the right attitude.

Sending hugs,and good wishes.x

[14523ok]

Living each day as though it's going to be the best day of your life is an attitude that can and will sustain you. Our understanding of which medical terms our docs and medical teams use can often put us in a state of sadness that only limits our energy and determination. NED or No evidence of disease are only words. Don't let them define who you are.

Remission, cure, recurrence, suppression, are all words that you can substitute with;

cancelation, recovery, return of the battle, or put down the enemy within.

Stay the course...

It sounds like to me that what you got was actually good news.

Stay focused on what you can do and never give up! You got this!

If today you can only affect one person, let that be you. In the storms of life we do find clarity.

Best wishes for you to be happy and free from worry.

[Lyndy]

Ugh! Surgeons should be seen and not heard..particularly this one!How does he explain the number of OC patients who have treatment and the cancer never returns?

Ignore him and keep going, patients astound their doctors every day xx

[SEckett in reply to Lyndy]

Hi Lyndy

He even mentioned that a lot of oncologist consultants haven’t even stepped foot in operation theatre. Amazing surgeon but as for appointment with him I didn’t feel great afterwards I was confused 🙈🙈

[Lyndy in reply to SEckett]

I wonder if the reverse is true as well? Has he visited a modern oncology unit and kept up with developments in treatment?? I feel cross on your behalf, what a sh*t thing to say to a patient who has endured so much xx

[SEckett in reply to Lyndy]

Hi Lyndy,

I have cried on and off all day. Have an appointment on Monday with one of the top oncologist consultants from Southampton hospital. Southampton cover Basingstoke, Winchester and surrounding areas so I will let her know how I felt and what was said. Sheenagh xx

[Cobweb2 in reply to Lyndy]

Agree with your comment about seen and not heard!! Had horrible experience with surgeon comments!! ......... whats the difference between god and a surgeon? ..... god dosnt think he's a surgeon!!!xx

[Eriksendi]

I really feel for you. I was very fragile emotionally after my diagnosis in may/June 2017. After my big op, 8 hours and three days in intensive care, my surgeon was just lovely so empathetic. He made no promises and I had been told my cancer , was not curable but treatable. His manner and honest answers to my questions really helped, along with his caring attitude. My cancer was advanced and so far I’ve had no further treatment which is amazing and I am so grateful for. I think it’s a very delicate balance of being told the truth but also the delivery means so much when you are so poorly. I appreciate your surgeon is highly skilled surgically but I’m so disappointed with the manner of his delivery which has quite rightly left you distressed. I wish you all the best and a very long remission, or whatever term is used x x x

[Manchesterlady]

What a rubbish thing to say to you ,my oncologist only ever says I’m doing well ,so I have to accept that as I have asked him several times if I’m Ned or in remission. Still get the same answer . Good luck x

[ruthg55]

Hi Sheenagh,

I know it is hard, but please try and focus on the the good part of your diagnosis that you only have "microscopic bits".

That was also my diagnosis after surgery 6.5yrs ago for Stage 3 advanced. (I did have a very small recurrence 3.5yrs ago which only required surgery.)

I've never asked does this mean I am in remission and none of my team have ever mentioned it, think in Australia the term NED is used more. To be honest, my interpretation of remission or dormant kind of mean the same thing. Dormant cells can remain just that - for a long time!

It is understandable how fragile and distressed you are currently, trust that in time you are going to feel mentally so much better. Wishing you all the best with your recovery. Xx

[Morini]

It sounds like the news was delivered in a way that you found negative and devastating. Take some time to process your emotions and grief and ask to speak to him again if you need to, or another specialist like Ovacome or McMillen. My consultant taks about maintenance rather then cure which I found distressing initially but I now see it as positive and realistic. What does he mean by long term? I am definately planning nice things for next year, if I don't get to enjoy them that's sad but they give me hope and focus and will definately give me a boost when I do get to experience them. Good luck on your journey, you are in my thoughts xx

[Worsuz]

Hi. So sorry to hear this. I know at stage 4 they always talk about getting / keeping the disease under control. That it’s often classed, at that stage, as treatable but not necessarily curable but as you are stage 3 I would have thought the target would have been to get into remission. In my experience the oncologist will be your treatment guide and the surgeon’s involvement is only for a short period while you recover from the surgery. Our surgeon actually said ‘I’m the one who will whip it out but the clever stuff is done by the oncologist’. Try to stay positive and talk to your oncologist

[Casamimosa]

So cross to hear how your surgeon spoke to you! However it is the oncologist who takes over after your surgery check ups, hopefully they will be more empathetic! I am similar to you but a bit further along, I have been on olaparib 7months now following the chemo after the op and feeling well. Make plans for the future it helps to have something to aim for so you can prove him wrong! You probably feel rubbish if still having chemo once that's over you will feel bit stronger. Take care and good luck. X

[Tillymint61]

A surgeon's attitude is very different to an oncologist. In my opinion it isn't his place to comment on your prognosis. They do a 'job' which is hands on clear out what they can see. He can not possibly know wether you have 'microscopic traces left behind. He doesn't have that 'super power'Even a scans can only pick up disease over a certain size so in no way can he categorically say you have microscopic cells. Please don't let his ill thought out comments bring you down. (Did he quantify what a 'long term plan' is anyway? It's a different period of time for mist people with or without cancer)My oncologist told me from the start everyone's response to this disease is unique to them and that's where I am at. Yes I may have to take medication/treatment for the rest of my life , so do many many other people for lots of different medical conditions but I won't let it stop me making long term plans and neither should you based on one person's I'll thought out comment. Unfortunately we have no certainties in life, generally, but we are so desperate for them when we are diagnosed it doesn't take much to knock us back. I am angry on your behalf but want you to 'park' his comments now you have shared it with us. Work on the positivity again. Sending you some across the miles. Xxxx

[SUE7777]

Hi Sheenagh, I'm sorry about your upset, what a wally! Unfortunately just because someone is a talented surgeon doesn't make them an empathetic human being, with the right social skills to deal with fragile patients. I don't think your long term prospects are any different you just happen to know you've got a horrible disease. All the very best Sue xx and big hug

[delia2]

Hi Sheenagh. Your surgeon sounds appalling to me. You need a different consultant ASAP. What about PARP inhibitors? How can he not believe in remission?!? Have you spoken to the people at Ovacom for advice? Sending hugs.

[MarleyZ]

It's merely his opinion for every 1 surgeon that states some thing you can almost one another that will dispute that, there is no current cure for cancer, there is only treatment and hope the disease stays clear the wish is that eventually there will be a cure for cancer.

Oncologists and surgeons alike tend to use the words cancer free after operations, but they cannot know that as microscopic bits of the disease may be lurking around, but I would say to you fight on don't let anyone tell you what your fate will be or the date that it will be at ....that's in your hands and in the hands of time for new developments on cancer treatment are always coming into being. Wish you well and don't let em get you down, be positive as ever.

[Ruebacelle]

Might you ask your oncologist...surgeons are cutters oncs are doctors

[Realistic]

Sorry l find your surgeon very negative but everyones different. So please stay positive at all times. Ive been NED for the last 2 years and thats the way l like it it keeps me positive. My husband got a couple of months with pancreatic cancer 30 years ago and he's still here so he's helping me fight my battle with ovarian, in fact lm doing the 100 mile walk in Tenerife on our holiday for breast cancer research our dear daughter in law got diagnosed with it in summer. So far lve raised £580 so lm chuffed enjoy life no one can say how long we have enjoy each precious day and everyone around you. ❤ sending love SheilaFxxx ps lve done 58 miles so far yipeeeeeeee