My sister has been diagnosed with ovarian cancer. I'm new here so would appreciate any information given.

[nettiebobs]

My younger sister was diagnosed with ovarian cancer at the begining of March this year. What an absolute shock that was. Obviously devastated. I have joined this forum to try to understand the treatments and just what she is going through. She was diagnosed with stage 3c, and I have to say they were unbelievably quick once diagnosed (that took the longest 10 days ever). Within two weeks she was having her first appointement at Christies and only another two weeks for her first chemotherapy. She wasn't well after two days and ended up in hospital with extruciating pains. She was put on oxycodone for that, and still is. She goes for her 3rd chemotherapy on the 27th. I believe that she is having four sessions then a full hysterectomy the two more sessions. She is having paclitaxel and carboplatin. I was reading earlier of CA125 levels. Hers was 325. Is that high? It seems so to me. She shaved her head two weeks ago, and I have to say she looks fab. I can't tell you how proud I am of my sister, she's unbelievable. She also suffers from fibromyalgia so I assume her immune system is low as it is. If anyone has anything they can tell me about what may happen moving on I would be extremely grateful. Thank you for taking the time to read this post.

[Lovedogs41]

Hi there

Sorry to hear this about your sister.I am 42 years old and was diagnosed last February stage 4 high grade oc had 4 cycles of chemo,debulking surgery in July followed by 2 more chemo cycles.At diagnosis my ca 125 was 17,000!!! Normal is 35 and below.The surgery is a big op and is very nerve racking but it was no where near as awful as I was imagining it would be tbh.I was in hospital for 6 nights.I have now been Ned since last October and my ca 125 is now 9.I am not on any maintenance drugs,I was offered Avastin but declined it as I wanted my body to recover from the chemo and not rush straight in with more drugs.I also take lots of supplements and do hyperbaric oxygen.I have changed my diet to plant based,cut out all sugars,no alcohol and try to exercise regularly.I would really recommend doing everything you can and don’t just rely on conventional treatment.I believe you need to throw everything possible at this,it’s worth a try at the end of the day.Also [I looked] into care oncology clinic and join[ed] Always Hope fb group and read Jane Mcellands book How to starve Cancer,you can get from Amazon.

Wishing your sister all the best xxx

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[Lovedogs41 in reply to Lovedogs41]

Oh and also [I use] an exercise trampoline and bounce,It’s great for the lymphatic system and helps the lymph nodes to keep pushing the lymph through and Epsom salt baths 2 or 3 times a week to help.

Response edited by moderator and text in square brackets added

[nettiebobs in reply to Lovedogs41]

Thank you so much for your reply. Everything helps doesn’t it. I myself have idiopathic subglottic stenosis and have gone dairy free as much as I can. I would like to go totally plant based (I don’t have red meat anyway) but am not great on cooking.

I’ll be looking into everything you have written. It may even inspire myself. You are so kind.

Thank you.

[Irisisme]

Welcome to the forum, Nettiebobs!

I’m not sure about Lovedogs bouncing - That would be way too much for me, but a healthy diet and exercise are essential.

I was diagnosed in Oct 2016, also iiic. I also started with the same chemo regime as your sister (and obviously I am still here!). It’s called ‘neoadjuvant’ chemotherapy if it’s started before surgery. The idea is to reduce the size of any masses/lesions so the debulking surgery works better.

I did have Avastin with chemotherapy and carried on with it afterwards. It would be worth asking about. That drug starves of blood any cancer cells left after surgery and stops them growing. It worked well for me, although I am back on Paclitaxel now as there are some lesions that started growing again. I do feel that the chemo is working for me this time too, but I won’t know until 26th of this month.

Your sister will probably find the waiting for results to be hard; I think we all do, so this may be when she needs you the most. I find something to distract me helps. (I paint, some others sew, and some write).

The surgery is a big op, mine was close on 10 hours. The recovery isn’t fun but once over with it’s important to work towards enjoying life. I found I couldn’t do the thing I loved - gardening, BUT that was when I discovered the love of painting.

Your sister will need support to learn to live with OC, if she works for a living it is sometimes possible to get back to it - maybe just part-time. Also, if she finds she isn’t very mobile etc she could look at the Personal Independence Payment - the PIP benefit. If she has fibromyalgia she may have already looked at this.

She may even find, with having to be on steroids for a bit, her fibromyalgia pains may actually improve (I like to look for silver linings!).

My surgery was successful because there was no lesion left bigger than 1cm, although I was never announced clear (there was still evidence of disease along my bowel wall and not suitable for removal with stoma). Oh, yes, it’s possible she may need a bit of bowel removed and she may have to put up with a ‘stoma’ - pooing in a bag! Lots of ladies have coped with this so maybe one of them can tell you how they coped.

I have had help from my local Hospice - they are not just for ‘end of life’ but help those who have a life-reducing condition - which OC is, although it can be lived with.

I hope she gets an NED pronouncement after her surgery and chemo (she’ll have more chemo after surgery), but even if she’s not clear it doesn’t mean she won’t have many years left to live a happy life - I have!

Feel free to read my profile, it may help.

Lots of luck to you both.

Iris🍀🤗

[Irisisme in reply to Irisisme]

Ps severe abdominal pain could be the chemo drugs working on the cancer! I described it as ‘snakes biting’! 😞😊

[Irisisme]

Oh, forgot to answer the “is that high?” Question- yes, but not exceptional. Mine was 600+

[nettiebobs in reply to Irisisme]

Gosh, and I thought hers was high. Thank you so much for your replies. I have taken snapshots and sent them to my sister (she doesn’t do social media/forums) but I think she may do now. It’s great to get everyone’s feedback on this. And it affected me so much, it knocked me for six and I really thought I would be able to handle it but didn’t. I don’t know whether it was because I wasn’t well and waiting for surgery my (idiopathic subglottic stenosis) but I’ve pulled myself together and feel a little ashamed. My sister is wonderful, so strong.

She doesn’t work, she is/was at Uni. (From home) It made me feel so angry at life for a while, she was made redundant at 50 and decided to totally change course and re-educate herself, now this. Unbelievable!

[Irisisme]

I wish you luck with your surgery, nettiebobs; there are other issues besides OC and everyone needs support of some kind.

I hope your sister will be able to carry on with her degree, if she wants to. Perhaps the Uni will be able to make allowances for her absences. It is good to have something to focus on, I just found an art course but this month I’m starting one that is more structured and has ‘entry points’ for higher education.

Sending hugs for you both,

Iris 🤗🤗

[nettiebobs]

Thank you. I have had mine. That was my 8th. Yes you do sometimes mistakenly think you are coping as I did at the beginning but realised years later I really wasn’t. I have ‘sisters’ on living with idiopathic subglottic stenosis social media group. It saved me.

So this group is great. Maybe she will join herself hopefully. ❤️

[Jacky5]

Hi. Really sorry to hear about your sister. Some great advice from other ladies. I would say certainly beware of googling statistics as they are mostly out of date and they quote the average which doesn't take personal differences into account. Has anybody mentioned genetic testing to her yet? She should be offered testing which looks for the Brca gene. The result of that test may affect the treatment that is open to her.

Try to keep positive, so many ladies here will tell you they have lived with OC for years and continue to feel well and live a good life.

All the very best to you all.

Liz.x

[nettiebobs in reply to Jacky5]

Thank you for your reply. Genetic testing? I don’t think so. What does that mean?

[nettiebobs in reply to Jacky5]

Would that be useful for me to have that done? Or her daughter for that matter? I’m of an age where I have mammogram’s now (55)and so is my sister (52) but would it show other things? I’m so glad I posted on here. These are things that are so important. Thank you.

[Jacky5 in reply to nettiebobs]

This link should be helpful...lots of info.

I think most places test now and check for mutations.

My mum had oc and I was tested and found to be brca2 positive. A faulty gene. It doesn't mean you will definitely develope cancer but it does mean the risk is increased. My close relatives have also been offered the test.

Unfortunately my eldest daughter also tested positive...but....on the plus side this now means from age of 30 (when risk increases) she will be eligible for annual breast screen, and ovarian screening. She has also been told she has the option of preventative surgery, mastectomy and when older full hysterectomy if she wants it. She has even been told that she could potentially have her eggs checked and use brca free ones via ivf when she decides to have a family. She personally is glad that she knows.. she says she realises that there are so many women out there who have it and have no idea .

Some treatments work particularly well for brca positive patients. Olaparib is one.

Hope the link works if not just add 'in focus hereditary ovarian cancer ' to the ovacome search box and you should find it.

L.x

healthunlocked.com/ovacome/...

[nettiebobs in reply to Jacky5]

Thank you. I have asked my sister, she forgot to say that she had been tested at Christie’s and is awaiting results. Apparently it takes two months. But I am definitely going to talk to my GP and raise awareness of the risks I may/may not have of genetic cancers. My mother or indeed my father may have passed them down. Both my fathers parents both passed from cancers.

[Jacky5 in reply to nettiebobs]

Thats great it's been done already.Yes think mine took a couple of months. The subsequent tests for family members were apparently quicker as the lab know which gene to look for.Lx

[Tillymint61 in reply to nettiebobs]

Hi .Your sister will be offered it. They as me for permission to access tissue removed during surgery and I had a blood test. I was negative for both brca1 and Brian which meant there was no need for family members to have the test. I still feel vigilance is necessary and have preached this at anyone who cares to listen. Wishing you and your sister well. Most of the charitable cancer charities are there for the families of the patient. Helplines etc for Mcmillan. Cancer research UK. Maggies centres. (There is a lovely one at The Christie) It feels a lonely place but there is a lot of support around for you aswell as your sister. Xx

[Tillymint61 in reply to Tillymint61]

Sorry just realised you said she's already tested and is awaiting results. X

[nettiebobs in reply to Tillymint61]

Thank you. No, there’s different information in each reply so it’s great.

Love the name Tilly mint. Takes me back......

[Tillymint61 in reply to nettiebobs]

Haha! It's what my Dad called me❤

[banjoman]

My wife has been beating back the c beast for 6 years, and every day is a blessing. She's had every chemo known, Care Oncology's protocol, and much more. The tumors persist, but she seems to feel OK and carries on a normal lifestyle.Our surgeries have been numerous including the hysterectomy debulking.

It has been a long hard road, make no mistake, but it is all in the attitude of hope and faith that has kept her doing so well.

No one owns tomorrow, today is the gift.

Her ovarian was stage 4 when discovered, like too many others.

She also developed a brain tumor! That was a shock. Surgery proved to be very successful and there is no more concern there.

We are doing what it takes daily, and with good doctors, your sister will do just as well.

Her best bet is to become her own medical advocate.... get several opinions along the journey, study alternative options to traditional care, and never take 'there is nothing else we can do' as gospel.

Best wishes to your sister for a long and happy life!

[nettiebobs]

Thank you so much for sharing your personal stories. It means a lot. Such great advice from everyone. She will beat this and she and we will be stronger. Xx

[thejoannabell]

Your sister's situation sounds much like mine one year ago. Same stage diagnosis March last year, same chemo/surgery schedule. I don't have much to add to all the great advice you've already received, but I will say that the love and support of my two older sisters were HUGE in helping me get through that first year. She is lucky to have you! This group will help you understand the complex drugs/treatment options, and for her to have someone besides the docs who understands these things is a big deal. Best to you and your sister!

[nettiebobs in reply to thejoannabell]

And can I ask how are you now? How long after the chemotherapy did you have the surgery? How long were you in? Did you find the chemotherapy draining? Did you have two chemotherapy sessions after?

[thejoannabell in reply to nettiebobs]

I had three rounds of carbo/taxol, then I had my debulking surgery, and then another three rounds of chemo, so about 7 months. I finished chemo in August and was NED. I had a "second look laparascopy" as part of a clinical trial in October and there was no microscopic evidence of disease. I was also in a lot of pain prior to starting chemo, which gradually reduced with each treatment. The surgery went well and the recovery was manageable. I had very little nausea with chemo, but I was quite fatigued and short of breath, and had no appetite. My RBC and WBC counts dropped, and I had to have neupogen injections to boost my WBCs in order to continue with chemo. The neupogen did cause some bone pain, but it was manageable with medication. Overall I felt so much better even prior to the surgery in spite of the side effects of chemo.

I had a followup in January which revealed some "hot" parainguinal lymph nodes, so I am now on Avastin and Gemzar and doing well. The side effects from this combo are much less severe. I was put on Doxil instead of Gemzar at first, but I was unable to tolerate the severe mouth sores and skin irritation/blistering. I still don't have much energy, but otherwise feel well and my appetite is good.

It's not the greatest news that I recurred so quickly, but I have heard from lots of others who did also and are still here many years later. And some don't have a recurrence for years, if at all, which doesn't seem like the case if you just look at statistics online.

[nettiebobs in reply to thejoannabell]

She’s feeling breathless. Is that normal? How did you cope? I know my sister, she’ll ’soldier on’. She thinks she’s in denial and gets upset when she thinks about it. Do you get offered counselling?

[thejoannabell in reply to nettiebobs]

I felt breathless even prior to my diagnosis, I think because of the pressure of the tumors and/or the ascites in my abdomen. I even wondered if I had had COVID because it was so pronounced. I'm sure I had periods of denial, but oddly I coped better during treatment than after treatment ended. During treatment I was in kind of a fog, and being in treatment gives something to focus on, and everyone is so supportive. Then the return to "normal" life left me at a loss for how to move forward. Everyone handles it differently. I am in the process of getting a referral for a psychologist. I think all gyn/onc teams have a social worker who can help with finding appropriate counseling or therapy. I think anyone who is open to it could probably benefit from counseling; I wish I had done it sooner.

[nettiebobs in reply to thejoannabell]

Thank you for being so honest and open. I certainly feel better for reading everyone’s experience. Xx

[SASSY196]

Hi, you have lots of sound advice but I just wanted to add re CA125, CA125 is personal to every woman so a lady with CA125 who has it raised in the thousands may have same disease progression as another with only slightly raised or normal CA125. The symptoms are also very important diagnostic tools. Your sister and her oncologist need to learn what is 'normal' for her and use her measures to compare against. So generally I have quite low CA125 compared to many ladies on this site, mine was similar to your sister's at diagnosis but I was still 3c as is she, another lady may have less disease progression but be higher CA125. My recurrence became evident with low CA125 measures whilst other ladies are much higher. If you can persuade your sister to look on this site she I am sure will get lots of reassurance and ideas. I have learned so much on here and felt at supported. She does not need to share or comment.

Hoping for the best for her xxx

[nettiebobs in reply to SASSY196]

That’s helpful information. I’m seeing her tomorrow before her next session on Wednesday so I will try to get her to join. I certainly know how helpful these forums are. I myself are on one for my own condition. Just to talk to someone who feels and has gone through the same is such a relief. Thank you so much.

[Supermary]

So sorry to hear about your sister

A few important things to do

1) get s biopsy with a pathology report to confirm it’s OVARIAN STAGE3 and not uterine stage 3

2) get genetic testing to see if she is brac positive

3) get that pathology testing on both her biopsied tumor and on her debulking surgical tumorS

Why because all of this information targets what kind of drugs to use during and after front line chemo

Do help prevent recurrence

I woke up with a stoma after 9hr debulking surgery

I had it reversed BEFORE I got more chemo as it hurt and glad I did

SToma wasn’t fun but I got thru it

If she ends up with a stoma I would be happy to talk to her about helpful hints etc

Stay positive and supportive

Margaret

[nettiebobs]

Thank you. I think she has had a brac test but is still awaiting results. They say 2 months which I’m pretty sure must be up now so I’ll ask her to chase that up. But I will send her your reply and she can ask the questions. I’m so glad that people respond with answers or we would never know what to ask and whether things are relevant or not. I mean you just don’t need more worry do you at such a worrying time.

[deltasara]

Hi, really sorry to hear about your sister, I'm just a few months ahead of her. You have received lots of important feedback but I wanted to add a little bit. I have chronic fatigue and the thing I noticed most was that during chemo it behaved really well but the surgery knocked me sideways. I expect that your sister is determined and independent but it might help to prepare her to make use of all support available so that she can focus on recovering and not on housework, cooking etc. Wishing her the best of luck. Carol

[nettiebobs]

Yes, reading between the lines I was thinking exactly the same thing. Her third chemotherapy which was postponed for one week due to WBC being low has gone better than the last two. Her fourth is due next week but she had booked for a 3 day break with her daughter prior (that’s how the chemotherapy landed without the week break) so is going and will have her 4th chemotherapy on returning. She had her scan this week so is very anxious to know the results before she goes away if possible. Hopefully they’re good results.