Mum stage 3/4 ovarian cancer

[Be-Positive]

I have read many stories about people going into remission after stage 3-4 ovraian cancer but what seems to be the bad side to this is the reoccurrences or relapses I have seen people call them. What is the best advice any of you can give to be highly on top of this from happening? Should we push for more check ups, MRI's etc.?

How do we make sure we are on top of it the whole time. My mum was missed diagnoses originally so I want to be hot on it myself to make sure she doesn't slip through the net this time around.

Also can someone explain what a relapses or reoccurance is and what usually happens and why they are so bad?

Thanks for taking the time to read my post! X

[hansraj28]

Rising ca125 is an indicator and so is the scan which my onco does every 3 months . Also be on the look out for any lumps and bumps and often nails give an idea . I found looking at my nails daily and noticing ridges , blackening , bending , dips put me on alert . Also goes for toe nails but less obvious . nails are quick growing and reflect how the other quick growing one the cancer cells are progressing .

it is only my opnion !

[Be-Positive in reply to hansraj28]

That is very interesting about your nails. I will keep an eye out for that thoughout. Will the doctor be the person to take the blood tests for ca125 or will it be the consultant you are under that continues the check ups. Thanks so much x

[airfemale]

Hello, I am sorry your mum has had bad news. I also was missed and had a doctor tell me it was menopause. I have had one relapse. The only thing I can tell you is that each case is different. Mine was on the top of my bladder and in a lymph node near my lung. My oncologist was very vigilant and found it through a scan after rising CA125. I believe that is about it. Vigilance and a good oncologist. I have a great relationship with my doctors so they know me. Surround yourself with the best you can find. Good luck. I am interested in the nail thing the other person said. I have never noticed my nails altering but we are all different. Good luck.

[Be-Positive in reply to airfemale]

What stage did they class yours as? Mum was first diagnosed with it being advance OC as was in her lymph nodes which surrounded it. Since having out second consultation a couple of weeks ago, they had spotted a lump on mums neck which they had said was liking to be an affected lymph node and we were probably dealing with stage 4. We don't know where else it has possibly spread at this stage. I'm just praying and hoping it isn't on any other organs. Thanks for getting back to me. Xx

[airfemale in reply to Be-Positive]

I was stage 3c which means it had spread beyond the tumour into the first lymph nodes. I still here, 2 years later and in remission at this time.

[Be-Positive in reply to airfemale]

That's amazing, I am very pleased for you and will keep you in my prayers yours stays away for good! Take care of yourself and thanks for replying!

[Hidden]

It's great your mum's got you to support her. You'll find you're in good company on this site as there are quite a number of daughters posting to help support their mums.

This is a horrid disease and hard to get your head around. I didn't really try to do that until I had a recurrence. Many of us would say we've had to learn a lot of stuff we'd happily have done without knowing!

I think you're looking for a way of fending of recurrence. As I understand it, there isn't one. A very very high proportion of woment with OC recur and it seems to be a bit of a lottery who does and who doesn't, or how often they do, and after what sort of a period of time.

As others have said, once you're in the system, the oncologists tend to be great and follow protocols designed to pick up any problems on the horizon. It's getting into the system in the first place where the problems tend to occur. So, I don't think pushing for extras would help. I expect your mum is on 3 month monitoring? Though we sometimes go on to 6 weekly if they think something may be kicking off.

As I understand it, a recurrence is just OC appearing again. It may be in or near the original site or in other places (mine was in lymph nodes). It tends to be picked up by one or more of CA125 rising over a period ( though this can be down to other causes and is not reliable for all), scan(s), the woman herself feeling something's not right. (I'd not heard of the nail thing either, and shall now be monitoring them closely!).

As to what tends to happen when you get one. That will very much depend on the individual and where it is, as there can be different options depending on the answers. The range includes, I understand, watch and wait, more chemo of the same, more different chemo, surgery, radiotheraphy..... and probably more that I don't know about.

Why it's so bad is a difficult one to answer - or you'd get lots of different replies, but I would say it's a quality of life thing. I've had three lots of treatment for cancer in the last 6.5 years. This is not much compared with what some have been having.

It makes for a big challenge to really make the most of the time when you're feeling well (given that the treatments tend to make you feel worse than you did before) and live in the here and now, rather than, as we tend to do, thinking "when I'm finished with this, I'll......". That's what's so horrid about OC, you're never really finished with it.

One of the things I found the most helpful in reshaping my approach was the idea of thinking of it as a chronic condition, like diabetes or something.

This is probably more than you wanted to read over your conflakes, but it's diverting me from worries about my check-up later this morning!

Wishing you and your mum the very best with it all!

xx

[Be-Positive in reply to Hidden]

No I found your reply really helpful thank you so much. My mum hasn't stated treatment yet. I am taking her to the first chemo appointment today and my sister is taking her for the actual chemo to be inserted tomorrow. Mum was first diagnosed 1 month back with ovarian cancer that had spread the the lymph nodes surrounding her abdomen, her tumor is pressing on her kidney tubes so she has had to have two internal stents put in. We then saw another consultation around 2 weeks ago who noticed in the room mum had a lump on her neck, they then started to say we were likely to be dealing with stage 4, We don't know exactly where this it or whether it is contained in the lymph nodes or if it's on any other organs like her liver, lungs, bowel. I don't think they are going to tell us until she has a full hysterectomy and they see how bad/ok things are. I'm probably looking too far into the future at present in regards to reoccurrences, I just want to be hot on it from the start, we have been let down by delays with certain scans at the beginning so want to make sure I can be the annoying 24 year old that keeps on high alert with the doctors and my mum. thank you for taking the time to read my post and get back to me. I wish I came on here a lot sooner as the past month has been tough. Reading these posts really help and feel like your not the only person living in it. I will be thinking of you today, I wish you the best of luck with your results and will have everything crossed for you 😊 xx

[Hidden]

We love annoying 24 year olds! I have one of my own.....! And thanks for your good wishes xxx

[Hidden]

So sorry you and you Mum and family are having a rough time of it. Hopefully you will learn more at the appointment today. You will probably get information about the drugs your Mum will be getting and possible side effects from it. Constipation is a big one for us all so plenty of drinks, prune juice or ask for movicol or something else. Treatment does work as we have all found out so I suppose at the moment you are looking at a care situation for the next while. Try and get as many supports as you can, speak to the gynae liason nurse, go to Cancer support groups for advice and hopefully you also have a good family gp who will talk to you. Do drop in to the forum and ask any questions you need to ask, there is always someone who will answer you

[annieH1]

Hi Be-Positive.I've been diagnosed advanced stage four Ovarian Cancer.I had it a yr and a half befor diagnosis so I am now 2 yrs with it.I am on Avastin which so far is controlling it.The chemo didn't remove it but,I'm feeling great,(except for head cold),doing my household chores,cooking dinner etc.There are so many medications out the today to help those of us with O.C.Recurrance is a possibility but it's just another hurdle to overcome,the oncologist will have more ammo on supply to treat the Recurrance.Dont worry Hun,mum will face each hurdle and she is so lucky to have a loving,caring,supportive family.xx

[Julie40]

I was diagnosed stage 4 at 39. That was a year ago and I've had chemo , surgery and more chemo. I don't have any visible disease right now but have been told I'm high risk of recurrence but there are so many ladies with inspiring stories on here that keeps me positive. You can see from the comments on this thread that OC does have this problem but equally there are people that manage it abd have quality of life. Everyone is unique so you keep supporting your mum as you are, stay positive and pray for continued healing. Best wishes xo

[Be-Positive in reply to Julie40]

Hi Julie, I will keep all my fingers and toes crossed for you too that yours stays away. If you don't mind me asking where had yours spread to being stage 4? Mum was told she is stage 3 but then probably dealing with stage 4 because her upper lymph nodes have shown on her neck which indicates it's spread. Did you find out what was happening after the op? They haven't some any other scans since this as they said the treatment won't change either way. I'm so happy for you that you've come to the other side and can enjoy some normality again in your life. Thanks so much for replying! Xxxx

[Julie40]

Hi. My cancer had spread to my liver, bowel, rectum and diaphragm. They were able to clear it at surgery then had more chemo afterwards. My prognosis was very poor but a year on I've had no recurrence and praying it continues. I chose to life my life every day and deal with whatever comes as I know it would get me down. I need to be strong for my family and my positivity has really helped them deal with this. Don't get me wrong I still have really bad days but thankfully I seem to be able to pick myself up. Groups like this are wonderful because we can share our feelings and get support without worrying our families. Hope and prayer are what keep me going. Your mother is blessed to have a daughter like you xo

[Trathi]

Hi Be-Positive, I think for me I began to feel really bloated again and not eating well. I also had a pain u dear my right rib and into the centre of my abdomen. I went to the doctors and had a Ca125 blood test which was elevated. My oncologist immediately ordered a CT scan which showed the problem.

I think we are all happy when we are clear at follow up appointments or in remission as it mean that at that point the cancer hasn’t spread. When we have relapses or reoccurrence it means signs and symptoms have returned which after everything we have been through is frightening. But it may also mean (as in my case) the cancer has spread to somewhere else in the body (which is what none of us want), and treatment needs to begin again.

As for signs and symptoms of this happening it is difficult as everyone is different, what I would say is if your mum has anything different from her normal. Go see your Gp. I hope this helps.

Sending lots of love 💕 hugs 🤗 and positive thoughts xxxx