Low grade serous carcinoma: My wife is suffering... - My Ovacome

Another concern is she is pretty young, she is only 27. I hope she recovers soon. Going through very tough time and I need the community to share their experience.

BeeWild

in reply to prateek0490

Hi and welcome to the forum x I haven’t got low grade ovarian cancer, mine is high grade but I have had surgery and chemo following diagnosis last year.

Everyone reacts differently to chemo but it was doable for me, the best advise I can give you both is to keep on top of bowel issues as it does tend to make you constipated! Take all the help you can get from your team and let them know all your side effects so they can help manage them x it’s terrifying to think about having chemo but the thoughts are generally not the same as reality and the majority of women cope well throughout chemo x

Sending you both gentle hugs and best wishes xx

in reply to BeeWild

@BeeWild thanks a lot for your response and advise. I’ll ensure to take all the help and ensure she copes up well with all this and emerge winner. We will fight and beat Cancer thanks so much for sending in your best wishes.

ZenaJ

in reply to BeeWild

Completely agree plus she has age on her side.

in reply to prateek0490

27, that is terrible. I was 38 when diagnosed with two small kids. I am happy to make myself available for resource for her if she is interested. I tracked down a couple of people who had my diagnosis/ surgery and it was soooo helpful to talk /email with people on the 'other side'

Nancy222

Hello,

Hugs on what you and your wife are going through.

In early 2016 I was diagnosed with low grade serous cancer. In my case, it invaded the bowel. I had a bowel resection (lost 8" of the colon), and like your wife, the cancer had gone into lymph nodes.

I was told that low grade serous was a slow moving cancer.

In my case, chemo wasn't horrible. I had fatigue and neuropathy, but in hindsight, that was all an acceptable trade-off for still being alive today. Your wife is strong and young. That will help her.

It sounds as if you are a supportive husband and you need to remember to take care of yourself.

XXOO

in reply to Nancy222

Hi @Nancy222 thanks for sharing your exp, so she has gone through a major surgery 3 weeks back where the doctors removed ovaries and uterus. Once the results arrived it was found that cancer has reached into lymph nodes.

Doctors have told that it’s a slow moving cancer and have advised to start Chemo from early next month, it would be 6 cycles, each cycle 3 chemos.

I haven’t informed her the real situation, I’ve told her that it’s a primary stage and she would get better after 6-8 months. She knows she would be given chemo therapies and there would be some side effects for the same. I’m making her stronger day by day to cope up with chemo and come out stronger. I stay strong in front of her but it’s pretty difficult for me to cope up (but I’ve no other option then to be positive and keep her stronger).

I’ve a small kid who’s just 3 years old. I’m sure with the current technologies and the level of treatment these days she will get absolutely fine and beat Cancer.

Thanks a lot for your well wishes

I was 47 when I went through what your wife is going through/about to go through but I can assure you that the chemo is totally doable. Once bit of advice I always give is stay off google. It will give you all sorts of statistics (mostly outdated). Your wife isn't a statistic she is unique. Google cant tell you what will happen but it will scare you unnecessarily. Yes your wife will have side effects from the chemo but she will have access to a team who will look after her. Tell her not to suffer unnecessarily. If she has nausea or any other symptoms then to let her CNS know so that they can give her the right meds. Not all antisickness work for everyone and sometimes need to be changed. The fact your wife is young and strong is on her side. Make sure you get any help YOU need too. This journey will affect you too. xx Big hugs to you both. Kathy xx

in reply to Katmal-UK

Hi @Katmal-UK yeah I totally agree, I’ve been doing a lot of research, google doesn’t shows the correct data, 99% of them are outdated and doesn’t give correct info. Totally agreed on that.

Yes, for any side effects we would let our CNS know so they can give the right meds. If you don’t mind me asking, when did you go through all this? Like how many years back? Are you completely alright now? If you don’t wish to answer, I totally understand.

Thanks again for sharing your exp.

in reply to prateek0490

It will be 11 years ago this coming October. I have had 2 recurrences and am currently NED (no evidence of disease) 5 years this Aug (have a scan on 15th with results on 22nd). I am currently on a trial drug. My mum was stage 3, had no recurrences and went 14 years before unfortunately succumbing to another primary cancer. See why I say what I say about the stats? Hope you and your wife are coping ok. I know it's all a shock (understatement) but when the dust settles you will find it easier to cope.xx Kathy xx

in reply to Katmal-UK

Thanks Kathy for sharing all this, gives me a lot of positivity. I’m sure you won’t have any recurrence now, you’re very strong.

I haven’t informed my wife about the Stage 3, I’ve just told her that it’s primary and will have to go through further treatment which would include 6 cycles of chemo. She is getting stronger.

Thanks Kathy, you’re such an inspiration for all out there.

in reply to prateek0490

Hi I only found out by accident I was stage 3 - I guessed basically given what the surgeon told me and what I had been through with my mum previously. My 'coping mechanism' is I only ask what I want to know the answer oo. Doesn't suit everyone, some like to know everything. For me it works. I acknowledge I have cancer, I'll deal with the treatment etc and carry on. I live, I don't put doing things off etc. Sounds like you wife has a lot of support from you and believe me that means and will continue to mean so much to her whilst she is going through this. Don't neglect yourself though and if you need a virtual shoulder we are all here xx

in reply to Katmal-UK

Thanks a ton, means a lot to me. I was so tensed until I found this site and interacted with you all, thanks Kathy!

in reply to Katmal-UK

What a fighter!!! Stay strong, sister! I love hearing those high numbers... I'm at 3 with no recurrence yet... but scared every day! I appreciate knowing you!

in reply to zinkteresa

Hi, glad to hear you are doing well. Try not to be scared every day, enjoy the here and now, otherwise u'll just exist and not live xx Nobody knows whats round the corner xx stay strong xx

WoodyB

in reply to Katmal-UK

Kathy, your story is great and gives all of us so much hope. How long have you been on olaparib? And have you managed to stay on the full dose throughout? Good luck with your scan xx

in reply to WoodyB

Hi. Thank you. I have been in Olaparib for 4 years, 7 months. yes on full dose of 600mg per day.

WoodyB

in reply to Katmal-UK

Really pleased you're doing so well. My wife (BRCA2) started on olaparib last October after chemo for 2nd recurrence and we're hoping it's as effective for her as it obviously is for you. Do you take any medicines (eg beta blockers) or supplements that you think may make your olaparib more effective? One further question if I may ... the advice is to avoid grapefruit and seville oranges, but my wife really misses marmalade. I'm thinking the amount of seville orange in marmalade is pretty small, but just wondered if you stay off marmalade?

in reply to WoodyB

Hi. I hope it works well for your wife too x. I do take betablockers under prescription and have done for the last 16 years but no supplements. With regard to marmalade, I have only just heard of the advice to avoid grapefruit and seville oranges. I have and dont avoid either tho I do avoid being in contact with ppl who are peeling citrus fruit of any description as I am allergic to citrus zest, although I can eat the fruit. Odd but true, I developed an allergy following a severe anaphalatic shock from carboplatin, along with an intolerence to other food items. That said, I do eat marmalade and have never been advised not to. Kathy xx

WoodyB

in reply to Katmal-UK

Thank you so much Kathy for sharing this. It's interesting that you are on betablockers, as I think there has been some research showing that they are beneficial for OC and some other cancers. Suzanne also reacted badly to carboplatin last time round, but not the first or second times. Sounds like the best way forward is plenty of marmalade but no carboplatin!! Long may your PARPs continue to be inhibited xx

LT27

in reply to Katmal-UK

Hi sorry I have to butt in, my mother also has stage 4 low grade serous OC, they did debulking surgery over a year ago and went through chemo 6 cycles a total then they put her on hormonal therapy, last CT scan showed tumor growth in her vaginal cuff between her bladder and doctor doesn’t want to do another surgery as it is complicated because of the location. I was thinking it could be a residual from the debulking that they did. they wanted to do hormonal therapy first before thinking about chemo. Can you pls tell me what trial med are you on? Thanks

in reply to LT27

Hi. Im not low grade btw. I am on a trial for Olaprib.x

Jen85

Hi. Im sorry you've found yourself in this situation. This is a fab site with lots of support and very helpful advice. You will notice many women here are a bit older, as it is more common in that age group, but there are a few of us a similar age to your wife (I'm 33). My oncologist told me that younger women tend to do better as generally we have fewer complications.

I agree with the advice you've already received- stay off Google! Can I ask how you were told the stage without your wife present? My husband tried to speak to my surgeon without me present (I was knocked out on morphine) and he wouldn't deliver any news until I was awake.

It is a rubbish place to be but there are some exciting trials in progress and there is absolutely no reason why any one of us can't be a survivor 😊

Wishing you all the best through this.

in reply to Jen85

Thanks for sharing your exp. Can I ask if you’re currently NED(no evidence of disease)?

When the biopsy reports arrived, I didn’t took my wife along with me to visit the doctor, the doctors then explained how it’s stage 3 and told me that since it has reached into lymph nodes it’s categorised as Stage 3, good thing was lever isn’t affected at all.

I told the doctors not to tell my wife and I’ll handle the situation and inform her about this and will make her stronger for further treatments. I didn’t inform her about Stage 3 but I told her that it’s at primary stage and it’s good that it got detected so that it can be cured and we can stay together for a long long time and see our child grow.

She is now ready for Chemo which would start nearly about next week. She is a fighter.

Thanks to everyone for such a wonderful support

Jen85

in reply to prateek0490

I'm NED now, I didn't need chemo as surgery removed it all and on 3 monthly check ups 😊

in reply to Jen85

Great to know that!

in reply to prateek0490

Please do be honest with your wife. SHe is young and can fight, but she needs to know what she is facing.

Beatrice17

Hi. I had surgery last dec and finished my 6 chemo cycles 2 mos. ago. Chemo wasnt that hard for me except for weakness 5days after each cycle (each cycle is 3wks) and neuropathy. I didnt experience nausea and pain which was good for me. But now I have some joint pains and lose bowel which Im hoping is not a serious matter. I'll have a PET CT scan next week and im hoping it will show NED☺

Your wife is young and so is your kid. She's more inspired to win this battle so believe in winning! And most importantly, pray a lot☺ God bless!

in reply to Beatrice17

Great to hear, thanks for sharing. I’m sure it will show NED now. This gives me a lot of strength. Thanks.

BellmoreBelle

Why aren't you telling your wife everything?

in reply to BellmoreBelle

I’ll but once the treatment starts, I don’t want her to go through any pain by telling all this, it was very tough for me to inform her that she won’t get pregnant again and she’s suffering from Cancer. I cannot tell everything at once, I’m too scared to handle this all.

Di16

in reply to prateek0490

I hope you don't mind me saying this, but likeBellmoreBelle, I feel concerned that you are not being honest with your wife. I realise it is very difficult for you to tell her. It is always very difficult to tell someone close to you difficult news. As an ex nurse, I have met 1 or 2 people who have spoken to a relative's doctor & asked for information, & not wanted their loved one to be told. They thought they were protecting them I think. But as a cancer patient, I would not want my husband to be told information about my cancer that he was withholding from me. It's been difficult for him to cope with my cancer diagnosis anyway, & it would be even more difficult if he was withholding information. I think it would also be a barrier between us. I want to know what's going on, & if we can be reasonably honest with each other, we can better support each other. Di

BellmoreBelle

I would be very upset that someone I loved wasn't completely honest with me. I hope she will forgive you.

LT27

So sorry about your wife. My mom is also battling the same cancer, was diagnosed 2016 and surgery 2017. They need a whole lot of our support. Just keep the faith and lots of prayers🙏🏼❤️

Toni16

Hi prateek0490

I’m glad you found this site as it sounds like you are taking on a lot and you need to share and get support. Our partners are often forgotten about when we are going through this and they give us so much support but you need to look after yourself too. Do you have family and friends around you. Please do talk to them. They can do so much for you. Dinners are a great help as chemo effects everyone differently but fatigue is the most common and if there’s one thing you don’t need to think of then you can spend time with your little boy and your wife. Take all the help you are offered. There was a team of ladies from my kids school dropping in dinners and although it might not of always been something we liked it was much appreciated when I was lying on couch with no energy and hubby didn’t have to come in from work and start cooking.

When I was first diagnosed with stage 3 i didn’t think Of the number as my surgeon said stage 3 but curable. I did 3 cycles then surgery radical debulking hysterectomy and a bowel resection. It was also on my liver but chemo had removed Most of it and he got the rest. He was confident he got everything. After another 4 cycles of chemo there was no reoccurrence and no residual. That was last June 17. I have just finished another 6 cycles yesterday from a reoccurrence in Jan of this year but scans show NED and tumour markers are down to normal. So medicine is fantastic now and always improving. Ask oncologist lots of questions and just take a day at a time. And as some of the other have said the bowels are key. Not getting constipated is so important and the medication does this. I avoid the anti nausea ones if I can..not always possible. And I avoid wheat as only read recently from another patient that wheat is like cement in your bowel when on chemo. Lots of water fluids prune juice all good.

Lastly counselling for your wife and also yourself maybe. Very important to be able to vent and get it all out. And we are all here for you too. She will get through this. You both will. Take care and please do get the support network around you. Antoinette.

Zena41

Hi I’m low grade diagnosed last year 3c at 42.

They tried chemo but it did not work and This is the case for some low graders as the cancer is slow growing but not all it works for some.

I’ve learnt we are all different

I’m on hormones now and in remission

Thinking of ur wife.

in reply to Zena41

Glad you are in remission! Did you also have surgery?

Zena41

in reply to zinkteresa

Yes jan 18.

Babbey

Hi there

I too have stage 3 low grade, spread to lymph nodes. I had surgery last May, did chemo and am now on hormone anhibitors as low grade is generally a hormone driven cancer. Lots of research from MD Anderson in the States on the benifits of hormone inhibitors after chemo to delay reoccurrence. It’s just a daily pill, mine is called Letrozole. Very easy to take. MD Anderson is the hospital that specializes in low grade. I do believe there is also a doctor in Edinburgh who is also specializing and very knowledable.

I was told stage 3 is not curable but manageable, like diabetes for example. I feel great a year later. Back to work, travelling, life is good. Chemo was hard first round and there is so much anti nausea meds out there. Day 2 and 3 are generally rough and by end of second week you feel your strength is back.

Low grade is slow moving and often see as chemo resistant as chemo attacks fast growing cells. However it is the standard of care that is recommended. Went to a presentation yesterday from top reasearchers In clinical trials who said that some trials will disqualify you if you don’t have a session of chemo first. ( if that’s what’s your looking into later down the line)

Many new treatments are on the horizon right now , targeted therapies, immunitherapies. Things are starting to move and I feel positive.

I wish you and your wife every strengthAnd comfort. Please feel free to message any time. There’s not as many low graders out there as high raiders so we need all the support we can get. Facebook has some good low grade groups.

in reply to Babbey

Stay strong Babbey!! Keep livin'!

2002chevy

I have 3c low grade oc. Has radical hysterectomy Jan. 23 3018 and started chemo Feb 27 and finished July 3rd. Really had no side effects except my hair. Had hair down to my butt.😏 had a few visits from gastritis and bowel obstruction caused from surgery. Try to eat lots of fruits and vegetables. Pain pills and pills for nausea will constipated you. Also take stool stoftners and laxative. Some ins. May cover it. Mine did. When really bad take maralax also. I was lucky did not have to take pain or nausea pills.good luck.

busbee3

Hi there. I have stage 3 Low grade Serous Carcinoma. Low Grade is slow-growing and oncologists say it's completely different from High Grade, so only look at Low Grade articles if you look on-line. Your wife is young and that's in her favour as she will be strong physically. Lymph node involvement may not mean a worse prognosis for Low Grade. It often just sits there and doesn't do anything. Maybe they got all the affected nodes? The chemo is standard for all of us. You may want to find out if the tumour is Estrogen Receptor positive as she may be able to take aromatase inhibitors such as Letrozole later on. Some oncologists now use them instead of chemo first, but the national guidelines still recommend chemo first. I think she'll do well with chemo. Younger ladies don't mind it as much. Take care of yourself too during this time.

in reply to busbee3

Great point about estrogen! I take that and research is currently showing that it is the best treatment!

Hello! I too was diagnosed with Low Grade Serous - at stage 3c. Mine was spread throughout my abdoment and I was experience a lot of ascites. I had to have neo-adjavant chemo before I was a candidate for surgery. I had 2 rounds, then surgery, and then I had 6 cycles of IP chemo - which was very hard and I have lasting neoropathy from. However, the great news is that i have celebrated 3 years since my diagnosis and I am in remission and very strong. My advice is to fight as aggressively as possible. However, research shows that LGSC is chemo resistent - but slow growing. what is CA125?

coksd

Hi I was diagnosed last november with stage 4 ppc at age 35 I was admitted to A&E with a plural effusion had it drained I couldn't have surgery as it had spread so had 6 sessions of carbo/taxol with avastin and had partial response, try to organise who can support you during treatment or even offers of help with meals housework is very helpful. I had about 4 sick days a month and you would be tired but we had lots of good days in between and booked a holiday after it, I am on avastin my cancer didn't go away but its suppose to control it, I am 3 months out of chemo, Complementary therapies were very useful to me I did reflexology and mindfulness and then I started yoga, reiki and nutritional therapy after it. Message me any time if you want to ask anything about coping with treatment side effects, hairloss, make-up anything its all so hard at the start but it quickly becomes the new normal and try to be as positive as possible. xx Take care

Maus123

Hi Prateek. Mine is a low grade / borderline stage 3a tumour, which recurred much faster than expected, after two years.

I understand you don't want to cause your wife too much worry. The fact that she is young is, while tragic on one hand in terms of more children, probably a positive factor where the cancer is concerned. Hopefully it will stay away for good or at least for a long time.

But: Stage / spread of the tumours impacts recurrence risk. It may return. Don't you think your wife might want to make different life choices based on that knowledge? E. g. travel more now rather than in 20 years, eat differently, etc.

I would tell her, because it is her body, her life, her truth.

All the best to her and yourself. Maus.

BellmoreBelle

Hi Prateek, which country are you located in? In most countries, the patient must be told directly and, of course, has to be present. Imagine if the situation was reversed and she wasn't telling you the full truth about a serious medical condition you had, and its possible consequences. How do you think you'd feel?

CocoaW

Hi there I am a fellow low grader.. Diagnosed in the ER on November 20th 2017 I have 1 more chemo left . my most recent CA-125 was 99 I will get it re drawn on Tuesday the 31st while at my last chemo. I have a CTscan on August 8th and I am hoping for good news. This is all so very scary but there are more and more success stories. Please do not read the statistics on google they are all very old! Feel free to reach out at any time... Best of luck...