Faced with the possibility of chemo.

dreamstar

Hi there,
I have recently been given the awful news that during surgery some cancerous tissue has been found. It's just a tiny amount that was found in an ovarian cyst I had removed. I'm having more surgery in a few weeks to remove this ovary and some other tissue samples to ensure it hasn't spread.

Thing is after that we need to decide if we do chemo or not. Obviously the decision will depend on the results of the next surgery. But if the results are clear I don't know what I'll do. Do you do it as a precaution? Or just go with the fact the cancer has been removed. Going through 5 months of chemo which means feeling sick and losing my hair seems a really big deal which might not even be needed.

I'd just be really interested to hear from anyone who has been through something similar. Thankfully I don't know anyone who has been through cancer treatment before. So I have nobody who can advise me.

Neyite

Mod Note:

People are welcome to share their experiences here with you Dreamstar, but the mods will have to shut down the thread if it strays into medical advice given to you. That, you'll need to listen to your doctors on, not the internet.

Lux23

Hi there, I am sorry to hear about your diagnosis, I am sure it is very frightening. I can't offer much advice, but I have heard that the Irish Cancer Society support function is very good. It might be good for you to ring them and to talk to someone who has been through this.

http://www.cancer.ie/how-we-can-help/support/groups-services#sthash.GI1hGMtX.dpbs

Exclamation Marc

Hi dreamstar.

I was diagnosed with a Hodgkins Lymphoma back in March and have undergone 5 months of chemo. Unfortunately, I can't say how similar the chemo treatments are for an ovarian cancer and a lymphoma and obviously I can't and won't recommend it or not recommend it, it's not my place (nor am I qualified and for me I wasn't given a choice, given the nature of a Hodgkins Lymphoma!)

What I can say is that the last 5 months have flown by for me in hindsight. I lasted 4 months without losing my hair until my treatment was escalated to keep me away from radiotherapy at the end of it all and then it finally went about a month ago. I've only 1 1/2 more cycles of chemo left (37 days) and hopefully I'll be able to walk away cancer free at the end of it.

I'm very aware that I'm a guy and it's a lot easier for me to say this (as I look like I shaved my head, whereas its not the same for girls), but losing your hair is the least of your worries. I've seen some girls in my unit in SVPH with fantastic wigs and honestly thought they hadn't lost their hair until they took them off for the day's chemo. It will grow back. I know it is an absolutely daunting concept, but health is more important than hair.

In terms of feeling sick from chemo, you will feel sick on your first session, but this is totally expected and is actually required as it allows the nurses to determine which tablets they can give you to keep you from feeling sick going forward so when you come back for session 2, 3 etc, they know exactly what to give you to make the chemo go smoothly. As my nurse specialist told me at the start, "gone are the days where you will feel nauseous or bed-bound throughout chemo, we have the medication now to get you through".

All I will say is to follow your docs advice for the best way to get through the cancer. In 5 months time, your hair will grow back, maybe slowly, but it will. Your nurses will figure out how to medicate you to keep you from feeling sick. The only things that they can't help you with is the occasional tiredness (depending on energy levels, treatment, how you feel etc.) and how you manage staying away from people who are ill on your weaker immune system days.

Hope this helps. I've tried my best to give my advice from a totally non-medical point of view. Do whatever your docs think gives you the best chance of beating the cancer long-term, 5 months will fly by and you don't want to look back in a years time and regret not having those 5 months beaten, if that's what your doc recommends.

M.

dreamstar

Manufactured Miracle wrote:

What I can say is that the last 5 months have flown by for me in hindsight. I lasted 4 months without losing my hair until my treatment was escalated to keep me away from radiotherapy at the end of it all and then it finally went about a month ago. I've only 1 1/2 more cycles of chemo left (37 days) and hopefully I'll be able to walk away cancer free at the end of it.

Thanks so much for sharing your story and that's a good point - it is just 5 months. I guess when you see how quickly a year flies in those months would go quickly.

I need to have some surgery first so I guess I'm taking things a step at a time.

Thanks for sharing though and I wish you all the best with the rest of your journey and recovery!

Exclamation Marc

dreamstar wrote: »

Thanks so much for sharing your story and that's a good point - it is just 5 months. I guess when you see how quickly a year flies in those months would go quickly.

I need to have some surgery first so I guess I'm taking things a step at a time.

Thanks for sharing though and I wish you all the best with the rest of your journey and recovery!

You too. I'll keep ya in my thoughts and I know you'll get through it and be happy and healthy at the other end of it all!

Rubberchikken

i have no experience of cancer so no information i can pass on to help.
just want to say i'm sorry you're going through this and wish you all the very best.

the irish cancer society have a helpline that may be a good source of info. take care

irishlady29

dreamstar wrote: »

Hi there,
I have recently been given the awful news that during surgery some cancerous tissue has been found. It's just a tiny amount that was found in an ovarian cyst I had removed. I'm having more surgery in a few weeks to remove this ovary and some other tissue samples to ensure it hasn't spread.

Thing is after that we need to decide if we do chemo or not. Obviously the decision will depend on the results of the next surgery. But if the results are clear I don't know what I'll do. Do you do it as a precaution? Or just go with the fact the cancer has been removed. Going through 5 months of chemo which means feeling sick and losing my hair seems a really big deal which might not even be needed.

I'd just be really interested to hear from anyone who has been through something similar. Thankfully I don't know anyone who has been through cancer treatment before. So I have nobody who can advise me.

Hi OP


Your post has had such a major effect on me, it brought me back to 2 years ago when I was diagnosed with Ovarian Cancer.


It really isn't the death sentence it used to be, Its a very scary thing to go through. For me the most important thing was trusting my consultant, which I did. He was so patient with me, supported my decision in getting a second opinion and provided all his notes and my medical records to the consultant I went to for the second opinion.
I use to keep busy with lunch dates and day trips with friends and family when I was up to it. There were days when I just took to the bed, but, made a big effort the next day to get out and about regardless of how I was feeling. For me, I found it difficult at times to be social as I was scared of it all and couldn't handle people giving me their advice/opinions with out my asking as it was hard enough to digest what my consultant was telling me.


I also found counselling to be so helpful, it took me to try a few different counsellors but when I found the right one for me, it was such a relief. I felt the "fog" lift and I could be 100% honest with this person knowing on how I was feeling and most scared about and I didn't need to "protect" them like I felt with my nearest and dearest.


I had a tough 2 years of medication and surgeries, it really was a rollarcoaster of getting good news and then not so good news and not knowing what was around the next corner. But thankfully, Im doing well, recently returned back to work. Im finding, its only now the reality of it all is sinking in.


With regards to chemo, If your consultant is suggesting it, you need to trust them. Try not to let too many people outside of your medical team influence your decisions with regards to your treatment plan.


Please feel free to PM. Will be thinking of you

dreamstar

irishlady29 wrote:

With regards to chemo, If your consultant is suggesting it, you need to trust them. Try not to let too many people outside of your medical team influence your decisions with regards to your treatment plan.

Hi irishlady. Thanks so much for your post. I guess just to feel like other people have been through it even helps. I hope you are keeping well.

My consultant has just mentioned chemo as a possibility. It will depend on the results of the next surgery. So I'm taking things one bit at a time.

I do like the idea of seeing a counsellor. Where did you get details for councelling? Was it the hospital?

Also do you mind me asking how old you were and what stage yours was at? I'm 29 and they think it's stage 1 - which is good. We had been trying to conceive for two years so my consultant has said that my fertility will absolutely be taken into account - which was a major relief for us.

irishlady29

dreamstar wrote: »

Hi irishlady. Thanks so much for your post. I guess just to feel like other people have been through it even helps. I hope you are keeping well.

My consultant has just mentioned chemo as a possibility. It will depend on the results of the next surgery. So I'm taking things one bit at a time.

I do like the idea of seeing a counsellor. Where did you get details for councelling? Was it the hospital?

Also do you mind me asking how old you were and what stage yours was at? I'm 29 and they think it's stage 1 - which is good. We had been trying to conceive for two years so my consultant has said that my fertility will absolutely be taken into account - which was a major relief for us.

I was 32. Mine also was stage 1. I found my own counsellor, googled it. I didn't go through the hospital or Irish Cancer Society - just wasn't for me, denial maybe. At first I didn't want people to know, kept it a secret. Was afraid of people being awkward around me or pitying me. As time went on, I realised I was using so much energy by keeping this a secret that gradually I let the walls down. I wish I had done it sooner as it would have saved a lot of anger and resentment on my part. Hindsight is a wonderful thing!
I'm doing well now, still coming to terms with it all, but so grateful to be given the second chance.

Exclamation Marc

Have a look at Arc Cancer Support Centre, it's a drop-in centre with amazing people.

http://www.arccancersupport.ie

They have counselling, t'ai chi relaxation, relaxation and visualisation programmes. Even massages. They welcome you and your family and apparently they do lovely cups of tea (not a tea drinker myself! )

All free.

IRLConor

I had chemo back in 1999 (Hodgkins lymphoma, stage 1, ABVD once a fortnight for 6 months) and there were a few things that I learned in the process:

1. It's probably not as bad as you think. It's no walk in the park but it looks a lot worse than it feels, if that makes sense.
2. The anti-nausea drugs are pretty damn good (and I can only imagine they've improved since I had them). I probably felt less than 2 or 3 hours of nausea cumulatively over the 6 months, and some of that was my fault!
3. You'll have good days and bad days. The temptation is to take it handy on the bad days and pack lots into the good days. Be careful not to overdo it on the good days. If you spend the good days wisely and are well rested going into each session then the bad days will be much easier on you.
4. I know this is easier for me to say as a guy, but don't worry about the hair loss. If your doctor thinks you need chemo, then you probably need it more than you need your hair! Depending on the particular drugs involved you may not lose all your hair either. I didn't lose all of mine and they're much better at minimising hair loss these days. At the end of the day it'll grow back whatever happens.

If there's anything above that doesn't make sense or that you'd like me to expand on feel free to ask (either on-thread or via PM).

dreamstar

irishlady29 wrote:

At first I didn't want people to know, kept it a secret. Was afraid of people being awkward around me or pitying me.

I know the feeling. It's difficult when that awkwardness is there. I was so nervous meeting people for the first time after I'd told them because you can tell they want to ask things but are afraid to. I hate that. I'm very open about it all so just want people to treat me the same. I'm still the same person.
But I've found telling people and talking about it has helped me and them.

I do have days where I don't want to talk about it too though. Not to pretend its not happening but to have a break so it doesn't consume me too.

dreamstar

Manufactured Miracle wrote:

They have counselling, t'ai chi relaxation, relaxation and visualisation programmes. Even massages. They welcome you and your family and apparently they do lovely cups of tea (not a tea drinker myself! )

Thanks for this. It's definitely my kind of thing!

mark_jmc

Hi op , sorry you are going through this difficult time. I was diagnosed with testicular cancer back in June and had an op in early July to remove the affected testicle/ blood vessels/ spermatic cord etc.
Like you I had to wait for results to see if I needed further treatment. After the test results I was given 2 options :
1. Surveillance only - this would involve monthly blood tests , regular scans in year 1 , then less often year 2 and so on until year 5. However because of the type of testicular cancer I had if I chose this option there would be a 35 to 40% chance the cancer would return

2. I could have 2 cycles of chemotherapy and this would reduce the chance of the cancer coming back to 5-10%.

I chose option 2 and I finished my last chemo 2 weeks ago.
It will be difficult to get you head around a choice until you have the test results and until you are given specific options. I wish you the best of luck and I know how difficult this time is for you waiting on results .
Take care
Mark

dreamstar

IRLConor wrote:

At the end of the day it'll grow back whatever happens. If there's anything above that doesn't make sense or that you'd like me to expand on feel free to ask (either on-thread or via PM).

Definitely some good advice there - thanks so much.

One other thing I'm curious about. The doctor mentioned that some people work through their treatment - taking the week off and going in the weeks its wearing off. Did you work during this time or take the few months off?

dreamstar

mark_jmc wrote:

I chose option 2 and I finished my last chemo 2 weeks ago. It will be difficult to get you head around a choice until you have the test results and until you are given specific options. I wish you the best of luck and I know how difficult this time is for you waiting on results . Take care Mark

Thanks Mark. This is very similar to me and I feel a little bit in limbo at the minute as it could go one way or the other. I guess I'll see how this goes first and look at it all again. It seems a lot of people are saying it's not as bad as it seems. Of course it's an awful thing to go through but a lot here have gotten through it which makes me feel a little less scared.

I wish you all the best with your recovery!

IRLConor

dreamstar wrote: »

One other thing I'm curious about. The doctor mentioned that some people work through their treatment - taking the week off and going in the weeks its wearing off. Did you work during this time or take the few months off?

I started chemo in the summer before 6th year in school. Mine only took an hour or two every second week, so it was handy enough to schedule. During the summer I was working a part time job on the end of a phone and so it wasn't too hard going. Once school started back I had the following schedule:

Wed: Half day in school. Grab some food and then head over to the hospital. Get the chemo and then head home.
Thu: Steroids and anti-sickness pills. Go to school as normal.
Fri: Steroids and anti-sickness pills. Go to school as normal.
Sat: No drugs. Usually pretty tired and a bit miserable.
Sun: No drugs. Mostly fine, so long as I had taken it easy on the Saturday.
Mon: Pretty much back to normal.

I think I may have missed one or two Thursdays or Fridays but that's about it. The best way I could describe the Saturdays and Sundays after chemo would be that they were a bit like a bad hangover. I felt a bit sorry for myself and was a bit tired, cranky and out of sorts but there was nothing really wrong with me.

Everyone's experience is different though, so I'd say play it by ear. If your job has you on your feet then you might have to take some time off. If you have a sedentary job you might find that the distraction of going to work is worth it. There's only so much daytime TV you can put up with!

It really depends on what the routine for the chemo is. If your oncologist recommends chemo then he/she will tell you what the timetable is like and will probably have a fairly good idea of how fit for work you'll be at each stage in each cycle.

ncur

Scalp cooling can be utilised to prevent hair loss due to chemotherapy, but of course it may not be suitable for all cancer patients undergoing chemotherapy, please check with your consultant.

http://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/hair-loss/scalp-cooling.html

The very best of luck with your treatment.

Exclamation Marc

IRLConor wrote: »

I started chemo in the summer before 6th year in school. Mine only took an hour or two every second week, so it was handy enough to schedule. During the summer I was working a part time job on the end of a phone and so it wasn't too hard going. Once school started back I had the following schedule:

Wed: Half day in school. Grab some food and then head over to the hospital. Get the chemo and then head home.
Thu: Steroids and anti-sickness pills. Go to school as normal.
Fri: Steroids and anti-sickness pills. Go to school as normal.
Sat: No drugs. Usually pretty tired and a bit miserable.
Sun: No drugs. Mostly fine, so long as I had taken it easy on the Saturday.
Mon: Pretty much back to normal.

I think I may have missed one or two Thursdays or Fridays but that's about it. The best way I could describe the Saturdays and Sundays after chemo would be that they were a bit like a bad hangover. I felt a bit sorry for myself and was a bit tired, cranky and out of sorts but there was nothing really wrong with me.

Everyone's experience is different though, so I'd say play it by ear. If your job has you on your feet then you might have to take some time off. If you have a sedentary job you might find that the distraction of going to work is worth it. There's only so much daytime TV you can put up with!

It really depends on what the routine for the chemo is. If your oncologist recommends chemo then he/she will tell you what the timetable is like and will probably have a fairly good idea of how fit for work you'll be at each stage in each cycle.

Hey Conor. First off, congrats on beating it. Really good to hear that you made it through And to Mark. Great to hear you got through the chemo and hope it'll all stay behind you now.

OP, to echo what Conor said, everyone's experience with chemo is a little different, even those with similar diagnoses.

My original treatment was every second Friday for more or less 6ish hours. I was pretty whacked that night and the Saturday and Sunday I'd just have to take it easy energy wise. The following week I might need the odd nap but I was generally fine on that treatment. Work had signed me off so I wasn't in which was good but in hindsight I probably could have been able to work on a reduced schedule energy-wise. Mentally, I can't say as mental tiredness may have crept in.

When the treatment was escalated, I'm now on a 21 day cycle where I'm in chemo for day 1, 2 and 3 and a couple of hours on day 8. Days 1-3 I'm in hospital as an inpatient. The first few days after that are just hit and miss. After my first new cycle, I went to a wedding and was up all night for more or less the weekend. After the second cycle, I was whacked for a few days. I definitely wouldn't be able for work at the moment aside from a few half days here and there if I was absolutely needed.

Generally your tiredness builds up over the course of the treatment on a cumulative basis, but unfortunately it can be impossible to plan. Like me you could come out of one cycle and be full of beans and energy for days, but on the following cycle be completely out of it if you're energy levels or bloods are down.

In terms of work, and from speaking to my own nurses at the beginning of my treatment, the ideal situation is to have as flexible a work plan as possible. I was told that some people are good to work after a couple of months, and some people aren't. I guess what I'm trying to say is not to plan ahead what you can and can't do until you've experienced it. I was full of plans to be back in work after 2 months but it just didn't happen. Do not commit with work to any sort of set plan or working arrangement if you end up going through chemo until you've experienced it, you just don't need the stress of agreeing to something that you can't commit to as the time rolls on. And if it goes the other way and you feel fully able to work, excellent.

One other thing to be aware of is that when you're going through chemo, your immune system will drop during your cycle, meaning that you're more liable to pick up infections or sickness. I've been lucky not to so far as I've been pretty careful and I've been lucky with the seasons, so it's not something that will definitely happen. Just be aware that if you're commuting on packed buses or working in cramped offices, especially over the winter months when flus and colds are everywhere, you can be putting yourself at a bit of risk (as flus and colds are a lot worse when youre on chemo and the immune system is already taking a battering). So whilst you may feel like working is a good idea, avoiding the crowds and sick people may be a better idea to keep you well.

The Princess Bride

Just to say - and this might come across as odd - ovarian cancer is one of the silent killers.To be diagnosed early is relatively rare, so you might not feel lucky, but believe me when I tell you are are very fortunate that it has been picked up this soon.
In relation to your treatment, no two treatments are the same and no two cancers are either.I'm speaking from professional experience.
I'd suggest asking your consultant what treatment he'd recommend if it was his wife/daughter with the same diagnosis/staging. No oncologist will recommend an unnecessary treatment.
They just want each and every patient to beat this bloody scourge of a disease.

Best of luck with your treatment from here on in, I'd second contacting The Cancer Society www.cancer.ie.

Mind yourself, surround yourself with people who are supportive and strong. Be prepared to feel a dozen different emotions- that's normal . I'd recommend reading Who Can understand? Talking About Your Cancer and also,The Emotional Effects Of Cancer- both available through Irish Cancer Society.
Take care.

dreamstar

The Princess Bride wrote:

Just to say - and this might come across as odd - ovarian cancer is one of the silent killers.To be diagnosed early is relatively rare, so you might not feel lucky, but believe me when I tell you are are very fortunate that it has been picked up this soon.

Yeah my doctor did say that it was unusual to be picked up so early. I know it is great - but yes, I don't feel particularly lucky. Please god the surgery etc. Will go well now. That's all I'm concentrating on.

I looked up the two booklets you mentioned and was able to download them. Thanks so much - there's some very useful and practical information there that will definitely help me.

I feel so much better reading all these comments and I'm so happy I started this thread. Getting all of this practical info and websites is exactly what I needed. So sorry to hear what some of you have been through and are going through but hearing about you guys going and doing it makes me feel stronger. Thanks to you all!

Exclamation Marc

dreamstar wrote: »

Yeah my doctor did say that it was unusual to be picked up so early. I know it is great - but yes, I don't feel particularly lucky. Please god the surgery etc. Will go well now. That's all I'm concentrating on.

I looked up the two booklets you mentioned and was able to download them. Thanks so much - there's some very useful and practical information there that will definitely help me.

I feel so much better reading all these comments and I'm so happy I started this thread. Getting all of this practical info and websites is exactly what I needed. So sorry to hear what some of you have been through and are going through but hearing about you guys going and doing it makes me feel stronger. Thanks to you all!

Sure you'll be back here yourself in a few years as well telling other people how you beat it and got through it all too. And how you came out the other side happy and healthy! Don't forget that.

IRLConor

Manufactured Miracle wrote: »

Hey Conor. First off, congrats on beating it. Really good to hear that you made it through

Thanks, and good luck with your own treatment!

Manufactured Miracle wrote: »

Generally your tiredness builds up over the course of the treatment on a cumulative basis, but unfortunately it can be impossible to plan. Like me you could come out of one cycle and be full of beans and energy for days, but on the following cycle be completely out of it if you're energy levels or bloods are down.

I don't think this can be stressed enough.

It's why I always advise anyone I know who's about to have chemo to make full use of the good days to rest and build yourself up. As much as it's tempting to use the good days to have the craic, you're much better off using them to put yourself in the best possible position for the next cycle.

StonyIron

All you can do really is take the advice of your consultant as they're coming with experience and knowledge and have your best interest at heart.

Any oncologist's main aim in their career is to cure cancer. These people don't get into these jobs for any other reason really.

If you want, get a second opinion but just be wary of what you read online. There are a lot of quacks and snake oil seller out there and also conspiracy theorists who just think scientific, modern medicine is bad.

Everyone involved will do their best.

In general from what I've seen of relatives with cancer, it's both manageable and curable in most cases.

The approach you take yourself psychologically depends on what suits you, but I noticed one of my relatives became very involved in the technicalities of the treatments and she just stopped finding them worrying and became quite engaged in the battle!

Get onto the Irish Cancer Society and see what services are out there locally. Even just having a spot to chill out in can make a huge difference.

At some stage, we're all fairly likely to have a brush with cancer. So, don't worry and just remember you'll have good support!

dreamstar

Hi all. I hope everyone is doing well. So I had my second surgery there yesterday. The doctor removed the ovary and tube and some surrounding tissue and also took washings to make sure that the cancer didn't spread.

He said that everything looked great and that things were recovering nicely from the last procedure. The ct scan also showed everything looked normal. So I'll have results in about a week. Feeling positive enough now thank god. :-)

mark_jmc

Great news , onwards and upwards!

irishlady29

Such a relief for you.

Exclamation Marc

Happy days!! Great to hear the surgery went so well. Fingers crossed for the scan results. Hope you get fantastic news

Leogirl

Following this thread as it looks like I'm.facing chemo once my baby is born (39 weeks pregnant now). Also told I would need mastectomy + radiotherapy but it's the chemo I'm dreading :-(

IRLConor

Leogirl wrote: »

Following this thread as it looks like I'm.facing chemo once my baby is born (39 weeks pregnant now). Also told I would need mastectomy + radiotherapy but it's the chemo I'm dreading :-(

One thing at a time. Good luck with the baby!

(Personally I'd dread the idea of giving birth more than chemo, but perhaps my friends who've given birth have just told me too many lurid stories!)