Had surgery on June 22nd and I have stage 4 OC ... - My Ovacome

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Had surgery on June 22nd and I have stage 4 OC that doc described as aggressive

Sashay2020 profile image
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I asked doc if this a situation for palliative care and she responded that she wants to cure me. She said the OC has not invaded my bladder, but it was growing on the outside and she scraped the cancer cells off. She also examined the length of my colon and scraped off the cancer cells on the outside. She said the cancer has not invaded the inside of my colon. We are waiting for the pathologist’s report. Doc says she will have to treat it aggressively and wants to have general surgeon install port. I don’t know what yo do. I was in truly awful pain following the surgery. I don’t know how it is for my sisters in the UK, but in the US they are so afraid of creating a drug addict that they give only small amounts of something called roxycodone or Percocet. I have fibromyalgia and now this. I am afraid of pain and I am not sure I can handle chemo. I am 69 and have one child—a 35 year old daughter who tells me not to worry about her because she’s “got this.” Can anyone share their thoughts with me on chemo and where I go from here? Thank you much. 🙏🏽

Sashay

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Katmal-UK profile image
Katmal-UK

Hi Sashay I'm sorry to hear you have had this diagnosis. Your Onc sounds very supportive and positive, I wish the Onc when I was diagnoses (stage 3) in 2007 was as positive! I've had chemo 3 times and yes it's no walk in the park but it's doable. Everyone is different and reacts differently with some people having milder side effect than others. I've never had severe pain, I've had mild joint and muscle pain which over the counter meds helped resolve, fatigue yes, nausea yes (treated with antisickness meds) . I hope you make the decision that is right for you. Sending you a big hug . Kathy xx

Sashay2020 profile image
Sashay2020 in reply to Katmal-UK

Kathy, it’s 7:00 am where I am. I told my daughter to stay at home and get a good night’s sleep in my bed. So I was at the hospital alone and at night I began to give up because I have not been able to pass gas since the surgery and can’t go home until I do. I can’t tell you how precious your kind words were to me. You helped calm me down so that I don’t make a snap judgment. I will talk things though with my doctor and my daughter. I am glad that you are still on the planet 🙂 Thank you and God bless you🙏🏽

Sashay

Katmal-UK profile image
Katmal-UK in reply to Sashay2020

Oh, I recall being very scared when alone in hospital for my op and the night seems to go on forever. im so glad you are feeling calmer. Another thing to consider is that you start chemo and as you progress through cycles you may feel like you cant continue and I did on a few occasions when I felt rough but be kind to yourself and by the time the next cycle comes round you'll be well enough to do battle again. On the other side is that no one can force you, its your body. I was originally told I had a couple of years, still here nearly 13 years later. I hope you are soon able to go home, nothing like being at home! Can I be nosy, whereabouts in the US are you? Big Hug Kathy xx

Sashay2020 profile image
Sashay2020 in reply to Katmal-UK

The great state of Louisiana! Shrimp, crawfish and oysters. 🙂

Katmal-UK profile image
Katmal-UK in reply to Sashay2020

oh very nice! I love going to the States when I can, had to cancel this year's trip! So far been Florida twice, Las Vegas 11 times (yep I love it there!), San Francisco , Los Angeles, New York. We've been trying to think where to go next. xx Do let us know how you get on xx

Sashay2020 profile image
Sashay2020 in reply to Katmal-UK

Thank you, Katmal. I sure will. My doctor stopped by and we discussed chemo. She said I should definitely do chemo and that she would be my cheerleader. Over your 13 years, ha it been an in and out of remission situation? Las Vegas changes so much. Every you go, there is something new.

Sashay

Katmal-UK profile image
Katmal-UK in reply to Sashay2020

When I was first diagnosed after my op I had chemo and a trial drug, Avastin. I then went about 4.5 years in remission before my Dad was diagnosed with terminal cancer, about a month later I had my first recurrence. I then had chemo and another trial drug Cederanib, Dad died about a year later and a month later I had my second recurrence. I had chemo and then after completing that I started my third (and current ) trial of Olaparib (lynparza) . At the end of this Aug I'll have been in remission 7 years. Yr Dr sounds amazing! I wish they were all like that. I admit to being lucky but that wasnt alway the case, my furst was all doom and gloom, I got rid, cant be doing with that! lol. What I should have mentioned is my mum had stage 3 OC, had op, chemo and then went about 14 years in remission xx

Re our visits, I think thats why we keep going back, year on year Las Vegas changes, gonna miss going this year, have to maybe do a longer trip next year and throw in another state xx

Sashay2020 profile image
Sashay2020 in reply to Katmal-UK

Katmal, I am so sorry that you lost your father. You are amazing. I did not feel so strong last night. I hurt so much. I was getting blood transfusion. When the nurses’ backs were turned, I grabbed my pole and walked as quickly as I could toward the elevator. I just wanted to run in front of a bus. Well my plan failed and I was put back in my room. I guess I was designated a flight risk because when I got up to potty, a loud alarm went off! I have been calmer today. Thanks again for your support.

Katmal-UK profile image
Katmal-UK in reply to Sashay2020

Oim sorry you felt like that last night. I know the feeling of trying to run away, I once got in my car and drove and drove. Im glad you are feeling calmer today, the night is the worst when ppl around you are asleep and all is quiet and you are alone with your thoughts. I was told at diagnosis by 3 ppl, my nurse, a Macmillan nurse and my surgeon, 'your prognosis is not good', 'you have a couple of years' , well im still here despite 2 recurrences! Ovarian Cancer is treated as a chronic disease, just concentrate on getting better. has anyone offered you counselling, it does help. Big hug xx Kathy xx

Sashay2020 profile image
Sashay2020 in reply to Katmal-UK

Hi Katmal. I have gotten past the long black hospital nights. Still recovering from surgery. But my port is in and I start chemo Wednesday. One day at a time.

Sashay

Katmal-UK profile image
Katmal-UK in reply to Sashay2020

Hi Sashay, Glad to hear you you are moving forward. remember to be kind to yourself on chemo. I wont lie, you will have bad days but hold the thought that as each day passes the chemo is doing its job and better days will return. We are all here for you if you have any questions xx Big hug, Kathy xx

Sashay2020 profile image
Sashay2020 in reply to Katmal-UK

Thanks, Kathy. I will hold good thoughts.

Sashay

Ruebacelle profile image
Ruebacelle in reply to Katmal-UK

more thoughts: chemo is your friend. your doc, you and the chemo are a team. are you in a teaching hospital? it's important that you have a well trained experienced team and nurses are angels in disguise. nausea: they can control it easily. fatigue: give in to it, binge watch grace and frankie, the ranch, endless series.....and if you are a reader (I am and went through galsworthy and trollope) read the great story tellers like diana gabaldon, and at some point it will become a game you play with yourself and the universe. Good luck my thoughts are with you

Sashay2020 profile image
Sashay2020 in reply to Ruebacelle

Ah, I have a Diana Galbaldon on my bookshelf that’s been waiting’s for me for months, Ruebacelle. I will rewatch Grace and Frankie and check out Sam Elliot in the Ranch. Thanks for your good wishes. They help strengthen me.

Sashay

Newbie_2020 profile image
Newbie_2020

Firstly, congratulations on getting the surgery done and it is now behind you.

Chemo after surgery is part of the treatment and it is prescribed to target any cancer cells that were not visible to the surgeon and/or couldn't be removed. So, reaching thus far, it would be for the best to continue the fight and hopefully decide to go for chemo.

The word "chemo' can be frightening but things may turn out not to be as bad as anticipated.

The steroid and other drugs given before and after chemo usually do their jobs and you'll not feel any bad nausea.

How you react to it is very individual as Katmal-UK noted. Tiredness was what I suffered from most but as days go by things will ease and by the time you reach the 3rd week after the session you'll feel better and be ready for the next one.

If for any reasons you couldn't take it after the first one or your blood results and body are not fit for chemo, they'll stop it until you are ready.

Good luck and I hope everything goes smoothly for you.

Sashay2020 profile image
Sashay2020 in reply to Newbie_2020

My dear Newbie 2020. Thank you for reply. The sun is up here. That and reading Your response along with Katmal-UK’s lifted my spirits. My challenge now is to be released from hospital. I must pass gas before they release me. So now my fight involved taking laxatives, drinking fluids, and walking. I will focus on these three today and take courage from your kind words of encouragement!!! 🙏🏽

Sashay

Lyndy profile image
Lyndy

Hi Sashay2020

This is a lot for you to take in all at once. I completely understand the worry about chemo and I felt very apprehensive too but found first line chemo very do able and it gave me 4.5 years in remission. I would talk to your oncologist, tell her your worries and hopefully she will put your mind at rest. xx

Sashay2020 profile image
Sashay2020 in reply to Lyndy

Thanks, Lyndy. I see my oncologist on Wednesday and will discuss my fears with her. 🙏🏽

Hi Sashay. I was diagnosed stage 3C, 8.5 years ago, when I was 65 (now 74). I too am a coward when it comes to pain. But I have learned to say to myself : "it's just 10 minutes of my life" - or however long it will be. This has helped a lot.

I have a port. These days, we are usually given maintenance drugs to follow 6 rounds of chemo. This makes a port well worth having. I used to dread the struggle to find veins in my arms. My port's been there for around 6 years & it's no trouble to me; it's been a god-send.

Your Doc sounds simply amazing. She will be a great support & help you through it. It's reassuring that the growths are on the outside of your organs & not the inside.

I am in Australia and have to say that I haven't heard of women becoming addicted to any of the drugs we're given, not here or in the UK.

After my initial operations & 6 months chemo, I was in remission for 18 months. The OC returned & I had another 6 rounds of chemo, which put me straight back into remission. I continued with Avastin as a maintenance drug until now (5.5 years). So the vast majority of my time since diagnosis, I've been fit & well & managed to do all that I want to do.

The decision is, of course, yours to make. I personally can't imagine giving up the fight but we're all different. Best wishes. Pauline.

Sashay2020 profile image
Sashay2020 in reply to

Thank you so much for telling me about yourself, Pauline. I am very grateful to be home. My sister helped me shower and shampoo my hair. You helped me understand what might be possible, although I know each woman’s journey is different. Thanks again. 🌼

Sashay

Thinkerbell profile image
Thinkerbell

Dear Sashay2020, I'm really sorry to hear what you're going through. There's no words to bring peace to a newly diagnosed cancer patient so I really understand the anxiety that not knowing what to do might cause you. I suggest you to put down all the questions you have so you can clarify everything with your doctor. Please trust your medical team and open up about your feelings and doubts, they are usually very good helping patients to come tp terms with diagnosis, everyone is different and for that reason your needs will be cater for.

I sincerely hope you choose what is best for you. Sending you a big hug and tons of positive vibes from London 🙏🤗💕

Sashay2020 profile image
Sashay2020 in reply to Thinkerbell

I do appreciate your advice, Thinkerbell. I see my oncologist on Wednesday. I hope for some reassurance regarding pain. I will try to stay positive. Thanks again for responding. 🙏🏽

Sashay

MarieRB profile image
MarieRB

Hello Sashay - my OV was/is also Stage IV - diagnosed 2011 - and following three courses of chemo and two lots of local radio-therapy I am surviving, and surviving well. The chemo journey can be a strange and difficult one, and individual experiences can be hugely different. Nausea and fatigue and joint pain would be the main side-effects, though not everyone has side-effects, and whatever drugs are given you to combat these can be complemented by natural remedies. What your Onc says about your particular situation sounds positive, but trying to deal with the big existential questions that surround the 'will I- won't I - have treatment' when one is in pain is not the right timing at all - never is! We are all so very vulnerable at a time like this. It's a question of placing total trust in the medical team whose job (and desire) is to get you through this to a place of healing. And I think it's a question of having the right support for your spiritual and mental well-being that engages with putting the fear of pain on the back-burner when it looms up and threatens to overwhelm you. That is a completely different source of healing - do you have access to anything like that?

I live in Ireland, in the hills of Co Tipperary. Great that this website is global! Many blessings to you, keep the conversation going, this is a good and safe place to share worries and concerns. Marie

Sashay2020 profile image
Sashay2020 in reply to MarieRB

Hi Marie. My ex-husband is of Scottish and Irish heritage so we named our daughter Melanie which is Gaelic for “little dark one. She has visited Scotland and I would love to visit Ireland with her. Dare I even hope for such a trip! The church I attend is closed due to COVID-19. But I have other spiritual resources. Your advice is sound. I have been so afraid that I have not asked for strength. Thank you for reminding me to do this. 🙏🏽

Sashay

SUE7777 profile image
SUE7777

Dear Sashay,

I had my debulking surgery in December for stage 3b aggressive serous OV and finished 1st line chemo at the beginning of May, I'm now on maintenance Avastin.

Firstly I had medication to clear my bowel pre op. so I wasn't passing gas at all for about a week as the meds made me sick and I wasn't eating, so I hope you have better luck there. The chemo is not a walk in the park, you'll have some bad days maybe 2-3 every 3 weeks, and sometimes you may feel fine all the time but mainly you'll have good days, The Diagnosis is not easy and I don't think I have come to terms with all that yet. You just need to get going with the treatment and don't dwell too much on the bad stuff, you won't know how your going to react until you do it.

Your Doctor sounds great and will help you through and before you know it you'll be out the other side making plans!

Louisiana sounds a great place to live, there must be some great music going on there!

Take care, all the best, we're all here for you. I live in London by the way.

Sue xx

Sashay2020 profile image
Sashay2020 in reply to SUE7777

Thank you, Sue. It is amazing to hear from women around the world! I have been a Doctor Who fan for years and would love to visit London and Cardiff. Maybe I will. Thank you for sharing a bit about your chemo experience. I hope I can be strong 🙏🏽

Sashay

SUE7777 profile image
SUE7777 in reply to Sashay2020

Well if ever your in London we should go for coffee definitely. Sue xxx Good luck!

Sashay2020 profile image
Sashay2020 in reply to SUE7777

That would certainly be lovely. 🙂

SUE7777 profile image
SUE7777 in reply to Sashay2020

Keep on trucking baby girl and all the very best. Sue xxx

Jud15 profile image
Jud15

Hi Sashay, I agree with everything everyone has said. I just wanted to say if you still have the gas problem you could ask if the hospital has any peppermint tea, this can often help. All the best Judith

Sashay2020 profile image
Sashay2020 in reply to Jud15

Thanks, Judith. I’m back home and I have peppermint tea at the ready!

Hello Sashay I hope by now you are home safely. My daughter has fibromyalgia and we know how difficult it is to control the pain at times. Having a complication such as surgery just exacerbated the problem. But she now has a patch on her skin which releases a low dose of fentanyl for three days at a time. Maybe this is something you and your Doctor could look at? Then you can safely ‘top up’ with other medication when necessary. I don’t really think there is a massive problem with addiction. I bet we all have had opiates at some point in our journey, they are a necessity at times. (Anything ending in codone is one. We have Oxycodone in the UK). And we are all scared of taking it at times. But the pain relief does make it easier to recover. So I hope you can get what is needed to make you comfortable so you have the strength to deal with all the other stuff! Best wishes. Bernadette

Sashay2020 profile image
Sashay2020 in reply to

Thanks for responding Bernadette. My post op pain is improving. I managed without any oxycodon last night, so things are looking up.

Sashay

in reply to Sashay2020

Good! Stay strong (and don’t worry if you need to take the medication).

Sashay2020 profile image
Sashay2020 in reply to

Good to hear from you, Bernibear. Here is the US fentanyl patches have become a mortal sin. I never had one, but my old boss wore one and it enabled her to work her regular schedule at the office. I think it will be available whenever The time for palliative care arrives. Wish I could have a nice massage, but COVID has changed so many things. I’m glad to be able to reach out to the ladies here. Thanks again.

Sashay

girakoch profile image
girakoch

I understand absolutely how you feel. I had to have a second surgery for adhesions on my small intestine, 3 months after the initial debulking surgery. I thought my digestive system

would never return to normal and I felt desperate. But the body wants to heal and it did. The staples and scar made it difficult to stand up straight at first, but I persevered, and began to exercise. After the 2nd surgery I got the most terrible pain near my groin that made me cry out, but one day it just disappeared. I had weekly gentle osteopathy. I had had most of my chemo before the surgery, and had days when I thought I couldn't bear it, but I always recovered again. Your oncologist sounds positive so you should feel encouraged.It's much too early to give up. Accept you will have days when life feels unbearable, but there will also be days when you feel much better and full of life. Make sure you have some supportive family or friends around you who will 'hold' you when you feel like giving up. If I could get through this, you can too. I was 70/71 when I had my surgery.You will come through.

Sashay2020 profile image
Sashay2020 in reply to girakoch

Thank you, girakoch! After surgery, I had left groin pain. Felt like a red hot poker on my skin. But as you said, one night that pain just stopped. I was so happy. My appetite has returned and I am scheduled to begin chemo next week. I sure appreciate your sharing some of what you experienced.

Sashay

girakoch profile image
girakoch in reply to Sashay2020

I'm so glad you are feeling a bit better. You can come through this. If I can, I'm sure you can. I know I really want to stay alive!

Di16 profile image
Di16

It’s normal to worry at the beginning. You say you are 69 & not sure if you can handle chemo. I’m 71. I had 3 types of chemo earlier in my treatment (I was initially diagnosed 12 years ago) I’ve been told to expect to be offered more chemo when current hormone therapy has to end. I’m not looking forward to it, but when I can’t put it off any longer I will accept it. Di

Sashay2020 profile image
Sashay2020 in reply to Di16

Thanks Di. The pathology report came back and my doctor says I am 3b. I have to decide on whether I want the cold cap. Insurance will not cover it. I’ll have to read more about this. Thanks again, Di.

Sashay

Supermary profile image
Supermary in reply to Sashay2020

I am also stage 3 and thinking of cold cap

I may try as I feel there is nothing to loose

Iwillbeatit profile image
Iwillbeatit

Sounds like you have a great oncologist have faith in her. It is all very scary but she is positive which is great. Have the port fitted its a very minor procedure under local anaesthetic which avoids needles for all procedures in the future and as chemo affects your veins it will save a lot of pain from them looking for them in the future. Good luck

Sashay2020 profile image
Sashay2020 in reply to Iwillbeatit

Thanks, Iwillbeatit. Port going in tomorrow morning 💪🏽

Sashay

Iwillbeatit profile image
Iwillbeatit in reply to Sashay2020

Good it will make your life easier and less needles.

Cheryl4677 profile image
Cheryl4677

I was diagnosed with stage 4 OC in Jan 2017. Had debulking surgery and chemo followed by Avastin. I unfortunately developed some heart failure and had to have blood thinners for six months. In 2019 had recurrence and had chemo again. Been on a trial since last June and have another small recurrence that is likely to need more chemo. I’m surviving and life has many ups and occasionally downs.

I like the fact that your onc says they are trying to cure you. Shortly after diagnosis and surgery I was asked to complete a survey which asked me if my treatment was palliative. I was taken aback by this question as I hadn’t really discussed it. I took the bull by the horns and asked my onc and she said that my surgery was done with ‘curative intent’. I think that cure is never a word that is used much with most high stage cancers. The chances it will return are high but nowadays it’s often viewed as a chronic disease requiring treatment. I’m prepared to carry on down that route. I’m 67 now but feel life still has plenty for me to fight for. Good luck Sashay.

You sound like you have good support but this forum has helped me when I’m down or confused by the conflicting information that abounds on the internet and in the news! Keep asking questions and I wish you well.

Cheryl . X

Sashay2020 profile image
Sashay2020 in reply to Cheryl4677

Thank you, Cheryl. I was pretty low after surgery but my spirits have lifted here at home and I am eating more. Than you for your encouragement.

Sashay

delia2 profile image
delia2

Hi Sashay. I’m in the US too, on Cape Cod. I go to Dana Farber. I was the same age as you when diagnosed in 2018 with 3b. I was terrified of chemo too but got through. Pain is not the main issue unless you get neuropathy but especially in the early cycles of carbo taxol there were a couple of days of shooting pains, for me on days 5 and 6. Mainly you get fatigue and nausea and there are plenty of drugs for the latter. Your dr sounds fantastic. My gyn onc told me after surgery that if I didn’t have chemo I would be dead in six months. You are too young and too early in the game to give up. You can have many good times even during chemo. Also the port is really beneficial. It hurts a bit for a few days but not like major pain—more like a skinned knee. And then getting blood drawn etc is so much easier. So chemo is not a walk in the park but you get to be alive and have more good days than bad. Xoxo

Sashay2020 profile image
Sashay2020 in reply to delia2

It’s great hearing from you Delia. I get my port in the morning and start chemo next week if my bloods are okay. Now I know as to what to expect tomorrow. Thank you so much.

Sashay

LoveDolphins profile image
LoveDolphins

Hi Sashay, am so glad so many of this team jumped in to encourage you to fight and stay in the fight! You can see from the many years some of us have had in this challenge, this diagnosis is not the end of the road, by any means! I am especially encouraged by Katmal and her years of survival! I had my debulking surgery in 2013, so I am now seven years out. I think it was really important for me to just focus on staying in the present. Most of the problems are do-able that way. My son is an ER doc and he is responsible for me being alive ... he just wouldn't let me give up the fight ... and I can't tell you how grateful i am for that. It really helps to have professionals in the medical field to encourage you, so am really glad you have a positive and encouraging onc. And, Sashay, you have all of us. I live in Northern California. So, along with this amazing team of brave women, I encourage you to stay positive ... you have so got this! We are all pulling for you! Gail

Sashay2020 profile image
Sashay2020 in reply to LoveDolphins

Thank you for giving me a boost, Gail. The six nights I spent in the hospital were dark and scary and filled with watery nightmares. I just wanted it all to end. But being home and having surgery pain subside, along with your encouragement and that of the other ladies—well I have courage now.

Thank you!

Sashay

carolleigh profile image
carolleigh

I have stage 4 uterine cancer (since 2015) that my doctor described as aggressive. It was also explained to me that it also means it responds well to chemo since it's aggressive. I am not sure if I am right about that. Sometimes I misunderstand... But, on the other hand it does respond very well.

Also my doctor told me it's treated like a chronic disease. I didn't believe him, I guess. He kept saying I could do well. I have mostly been in chemo, which has not really been that hard. In many ways I got used to it emotionally. Exercise and healthy eating has helped most I believe. I spend a lot of time figuring out how to make myself strong.

I often hope they will invent new things and I will live long enough. Mostly I really had to learn to look past some of the ideas I had about the situation. I hope this helps, just to look towards it getting easier.

Love and strength,

Carol Leigh

Sashay2020 profile image
Sashay2020 in reply to carolleigh

Thanks for replying, Carolleigh. My older brother once told me that I see the glass half empty. Thanks for reminding me to see it half full!

Best of everything to you.

Sashay

Nicky100 profile image
Nicky100

Hello,

I’m so sorry you’re facing more treatment and the worry of pain. I’m in the U.K. and we are able to get prescriptions for pain relief.

Have you tried talking through your worries with your medical team there? Perhaps they think you are ultra strong and coping and are as strong as an ox!

There’s a good US Facebook page for ladies over there.

Maybe you or your daughter could ask there for advice too?

Good luck and much love.

Nicky xx

Sashay2020 profile image
Sashay2020

Thanks, Nicky. My doctor added 12 hour MS Contin. It helped a bit. But the searing groin pain I’ve had all week finally stopped last night! So I’m ready to move forward with things. Thanks for being kind.

Sashay

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