Ovarian cancer

A support group for anyone affected by ovarian cancer to come together, share experiences, and ask questions.

Mom recently diagnosed with Stage 4 Ovarian cancer (out of the blue)

lhundermark
Posted by

Hi there

I have no idea where to turn right now. My dad was diagnosed with cancer in April , just before easter, and underwent radiation/chemo combo . He finished his treatment in July and mom took ill and was in an out of hospital with bronchitis and two weeks ago with fluid in her lungs. Last week after numerous tests she was told she has Stage 4 Ovarian cancer. This hit us like a bricks. We are so confused as she has been having her pap smears yearly and nothing was picked up. She is 72. Yesterday she had a CT scan and the dr said today that it has spread to the fluid in her lung and stomach. He doesn't recommend an operation to remove her ovaries as he thinks it will be too much for her. They are looking at starting chemo next week (we are in south africa so its a process to get the medical admin sorted). Moms super emotional right now. I am too but only when I'm not around her, when I'm with her I go into auto pilot mode with no emotions. Dad is trying to be positive (shame he is still not completely done with his either, he still needs to have a second opinion to see the type of op he needs). I am an only child, although grown up and with a family of my own, this is a bit much for me to process right now. I know death is inevitable, but I just didn't expect this - we don't have a history of cancer in our family. I am confused as to why surgery isn't an option. I don't know if we should go for another opinion. I've read that its not uncommon to have chemo instead of surgery and maybe that will help. I don't know. Mom also is diabetic and has a heart condition so maybe that doesnt make her a good candidate for an op either. Im so confused and sad. I want to have hope, I just don't even know where to start with all of this. ITs been 7 days now and Ive kept a brief journal of my emotions - i just don;t know how to be supportive or anything :(

suze99
Posted by

Hi lhundermark

I am so very sorry to hear about your mum. You are clearly in shock at the moment, having just found out this devastating news. i am sorry too to hear that your family has been affected before, with your dad's diagnosis. I am sending you a hug as it sounds like you need one right now.

Unfortunately pap smears do not detect ovarian cancer. Their purpose is to detect pre cancerous changes in the cervix. Cancer is a horrible horrible thing to deal with and sadly can affect anyone at any time. 

Your mum's medical team are really the best people to explain the treatment they have chosen for her. It may be they think she is too weak for surgery and that it won't help or improve her quality of life. 

I have put a link here to all the information we have on the site about Ovarian Cancer if you haven't already seen it. I am sure her doctors will do all them can to give her as good a quality of life as is possible and rest assured they will manage any pain. If you wanted to you are perfectly entitled to seek an alternative medical opinion. I would talk it over and then decide. Do you have a close friend you could talk to?

It is an awful lot for you to deal with and you will be stressed and anxious. Don't be hard on yourself. You are doing a great job and your mum is lucky to have you there for her.

Take care and let us know how things go. Please post at any time.

Sue 

lhundermark
Posted by

Thank you for your message Sue. We are still in processing mode. Mom will start her chemo on thursday. If I am able to, I will go with her.I am assuming she will be on a hectic dose of chemo which will cause hair loss amongst other side effects. What are the most common side effects I should look out for ? 

Holz94
Posted by

Hi Ihundermark,

I am in a similar position to you in that I found out yesterday that my mum has stage 4 ovarian cancer that has spread to the lining of the stomach and the chest. This has come as a shock to us as my mum has been feeling poorly for 2 years with symptoms that she has been told is 'ibs' or 'depression. She has also had scans and was told that there were no signs of cancer but yesterday we found out she would have had cancer for quite some time. My mum is a fit and healthy 57 year old with no family cancer history. We found out about the cancer as she was having trouble breathing due to fluid building up on her lungs so she had to have the fluid drained. It was the CT scan that the lung specialists did that showed signs of ovarian cancer.  I have been reading about stage 4 ovarian cancer survivors so I wonder why you say that death is inevitable? I know the outlook doesn't look too great but miracles do happen! We are waiting for a biopsy to happen to determine what chemo drug mum will have then they have recommended 6 doses of chemo then a further CT scan to see where we are at. 


I'm feeling very emotional at the moment and would love to hear from anyone who has gone through something similar! 


Stay strong all xx

lhundermark
Posted by

Hi Holz94

Wow, seems like dejavu reading your story. When I said death is inevitable I meant that as a general statement, i.e.  I know its part of the cycle of life, however when you get told of cancer it just seems a bit more real that there is going to be a timestamp coming up .  Reading about the cancer survivors I am hopeful that with a positive attitude my mom will give up a good fight however its just such an unknown journey. I guess I am also feeling a bit sad as mentioned I just got through this with my dad (still going through it actually).

My mom starts her chemo this coming week  , Thursday. I will go with her for her first treatment to see what the plan is. I think she will also have weekly doses of chemo but how many I dont know. All I have been doing is taking each day as it comes and trying to make her smile. I cannot cry in front of her. I havent told my kids yet, my 9yo knows somethign is going on, she sees me crying alone. Its my sons birthday next sat so I think i will wait to tell the kids after - don't know, they are very close to my mom.

Thinking of you too and thanks for reaching out.

Holz94
Posted by

I hope everything goes well with your mum Ihundermark. It must be hard having young children and trying to hide your emotions . My auntie passed of cancer 2 years ago. She had a 9yo son but she decided to tell him everything, all but the gory details! Children can always sense that some things wrong and that you're upset.

I'm still living at home at the moment but I find that when I'm around mum I feel more positive because she's positive herself and I guess I'm trying to put on a brave face and be strong for her. I'm too taking each day as it comes :)

Will be thinking about you next week when your mum starts her treatment. Fingers crossed we will beat this!! 
Suki43
Posted by

I'm a going through the same thing with my mom. Hers is at stage 4a. She has had fluids removed twice from her stomach. She is bed bound and has cellutitus.  They can't operate but they said it will kill her..these were the doctors words. Chemo hasn't started either because of the fluid built up. I'm scared that we will lose our mom. She's been ill for 2 months now and has never had any health problems up until now. 

lhundermark
Posted by

Hi there

Sorry for the radio silence, been a bit of a rollercoaster. Mum has what seems the usual treatment plan (looking at what others have posted) of 3 cycles of chemo, each cycle being 3 weeks. Last week she should have completed one cycle however after her first chemo session there was alot of strain put on her heart (she has heart issues and is diabetic too) so she has been in and out of hospital to sort that out. Yesterday there was more fluid in her lungs so the doctors did a procedure to prevent that from further happening.  Its been really tough, but I seemed to have found a burst of energy this week and I'm just going with it. I think we have all accepted this now will be part of life and just taking it one day at a time. We really hope that she will be strong enough by next week to resume chemo as she desperately needs it but lets see, a bit of a catch 22, chemo is required but its pointless if her body can't handle it, so focus is on ensuring her heart is ok post this water fluid in the lung. 

How are you doing Suki43?

ARBB
Posted by

So sorry about your situation. It does sound unbelievable.  I am curious about how your mom did with her second round of chemo   I’m asking because my mom ( who is also stage 4 ovarian) reacted so badly to her first she wants to quit. She was in hospital for 7 days and now home with 24 hour care from me and my sister.  Mom is physically and emotionally exhausted and so are we.  There is no guide book for this deal and like you we are all just going on blind faith and a lot of prayer. 

Sending you hope for peace. 

lhundermark
Posted by

Hi there

Where do I even begin to continue....So she ended up staying in hospital for just over 3 weeks with the lung issue. She was pretty difficult to deal with, delusions, stubbornness with eating, paranoia  coupled with a refusal to sleep! I knew she would be challenging but didn't realise it would be that bad. Anyway eventually she got discharged about 2 weeks ago. Personally I think she should have stayed a bit longer as she was incredibly weak but it wasn't my decision to make. The first week she was back from hospital was a nightmare, she refused to eat, complained about tummy aches and pretty much didn't want to go anywhere. I just let my dad look after  her as I have two little kids and really didn't want to subject them to all of this, also there was lots of school activities going on, concerts, plays, prize giving etc so I needed to be bipolar and put on a happy face for my kids and I just could not cope with the depressing side of mom's health while doing that - also there wasn't much I could do for her as she was refusing everything. The week after was a bit better, I basically took a whole lot of soups and left it in her fridge and said its there if you want it. Everytime she started talking about being ill and complaining about the hospital, I would walk away or change the topic. I am and have never been a tolerant of pity parties and it seemed thats all she wanted to do. I did get her psych help but she refused any more treatments after 2 sessions because "they ask too many questions" ...yup. Also got a dietician to see her and mom had issues there for whatever reason, so it really felt like a no win situation there - hence me taking a break and focusing on my kids and work (I won't even talk about my poor husband who deserves 10 platinum medals for supporting me through this without me giving him much attention). Last week she was at least leaving her house and coming to my place a couple of times a week. Her eating has marginally improved but still not great. 

As for the chemo, they have given her the tablet form now as she is no where strong enough to go back to IV and also with her bad heart condition and the horrible reaction after the first time, it didn't seem like that was an option. Also my mother hates hospitals, she caused lots of stress to herself and the staff (and must admit it pretty much drained the life out of me, hubby and dad to do those visits). Its her second week of the tabs and she seems to be coping. To be honest, I don't take anything for granted, I want to be there for her but I don't know how to anymore. Everyday is different and I just roll with the punches. She is an angel and optimistic to everyone apart from me - just doom and gloom when I'm around. I try to get the kids to interact with her as she is less miserable around them and that works in small doses. 

I can totally understand and relate to how emotionally taxing it must be for you and your sister - at least you have a sister, I am an only child so I have nobody to go through this with me. There are no books, blogs or anything to help prepare you for what to expect, i've given up on that. I have started therapy two weeks ago and I am hoping they will give me some coping strategies as it does become pretty damn overwhelming at times. I will let you know how that pans out.

My kids are busy with exams this week so my focus is on that. As for mom, I will support where I can but I've had to accept (as hard as it is) that its up to her now to fight this. I can't fight it for her. And to fight, she needs strength which is in the form of food. It is amazing how the switch over of roles changes literally overnight . Today it felt like i had 4 kids instead of 2 (my two kids and my parents) and I actually wanted to scream! It is hard not to be in control of a situation and to rely on blind faith, medical experts and prayer.

I wish and hope your mom regains strength soon to continue with treatment. I keep thinking about the meeting we had with the oncologist where he explained the process...it all sounded so straightforward if it went according to plan, she would have been almost done with her chemo by now. But alas nothing went according to plans, she could not cope beyond that first session and it was just one complication after the other. However the silver lining is that today she is miles better than a few weeks ago and I've learnt to accept that small progress (even if super tiny), is still progress, so hold onto whatever progress you see my friend.

Sending you strength and warm hugs. 

ARBB
Posted by

Wow! What a roller coaster!  I wish I could explain why your mom is kind to everyone but you. Thant must be very troubling for you but remember that forgiveness is a powerful force. Forgive yourself and her.  

My mom could not bear the risk of a repeat reaction to chemo so she has moved into a Hospice House. The facility is wonderful and we are very fortunate to have it available.  I have been harboring so much anger and hostility towards her health care providers for there shortcomings as well as places where I could  have been a better advocate for her and perhaps failed in getting her the best care.  Now that she has moved into the Hospice house and decided to let nature take its course she is happy and relaxed.  She was fighting so that she did not let her children down but she really didn’t want to. It has been 2 months since her diagnosis and we have been through many stages of grief, all in our own way ( there are 5 children) but I am finally at acceptance.  I do believe that everything is as it should be not as I think it should be.


Wishing you peace as well.  

lhundermark
Posted by

Big hugs to you. I guess its good that your mom has made peace with things and made a decision. You are right, its not as how you think it should be, but how its meant to be - that has been the biggest struggle for me too.

Right now with my mom, I am taking it as it comes. So far she seems a bit better with the chemo tabs, I am not sure what effect it will have to be honest as I thought the IV form was the only option for the type of cancer she has but whatever gives her the quality of life she needs then that is all that is important.

As for the health care providers, I've come to realise that nobody really knows how to handle cancer. The oncologist and all the specialists around us, really just follow a check list and react, there isn't a clear pathway at all, especially when it comes to dealing with complications. 

Sending strength friend

ARBB
Posted by

Dear Ihundermark,

    It certainly sounds like things are getting better and I truly wish the best for you. 

in my small speck in the universe I share a heavy heart with my large family. our dear dear mother crossed over on December 1,  2017.  She went in peace after a 3 day coma.  Her official diagnosis was on September 25, 2017 so she made it about 9 week. Only a small part of that was good time due to multiple needle sticks, biopsies, paracentesis, thoracentesis, pleurex placement, infusaport placememt etc.  we laughed as much as we could and spend every minute we could with her. But it was devastating to go through.

i have no advice on the direction to go other than to explore all options. Western medicine is far from perfect. Love your family under all circumstances and overlook there faults if you can. Hold hands and stick together.

Faith hope and love to all of you

ARBB

lhundermark
Posted by

Hi there

I read this yesterday and immediately broke down in tears, I am so sorry for your loss. I wish I had words of comfort for you but I am not good with grief - my BFF (and closest person I had to a sister died 2 years ago and I still haven't gotten over it , her death anniversary is also coming up soon). 

This disease is so unfair and cruel. I  hope and pray you and your family are able to heal soon, the trauma of watching your loved ones goes through this is not easy. 

Thanks for your words of encouragement for me and my mom. I have no idea what the future holds, I just take each day as it comes, the tablets are better for her but she has not been the same since that initial chemo treatment, that I can see. I started therapy a few weeks ago, this is all too much for me to handle on my own so hopefully it will give me the tools to grow some layers in order to continue this journey - I am pretty tired right now though, but I want to enjoy every moment as best as I can with them, even though I have no idea whats going on in my mom's head right now, but as you said love them nomatter what.

I am in tears writing this my dear friend, I do feel so heartbroken for your loss. Sending you strength xx

eh11g11
Posted by

Hi Holz94, I have just read your post on here and wanted to get in touch as I'm in a very similar situation right now. My mum is 57 and recently (2 weeks ago) was diagnosed with ovarian cancer and stage 4 was confirmed today as the fluid cells in her lung are cancerous. We are hoping to hear results of biopsy by Friday to decide on the drugs for chemo. How did your mum respond to her first lot of chemo? Feel like so much waiting at the moment and not sure what to do !! Ella x