Ovarian cancer stage 3c/4: My mom was recently... - My Ovacome

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Ovarian cancer stage 3c/4

My mom was recently diagnosed with said to be ovarian cancer stage 3c. She had a "better then optimal" Surgery per the oncologist, and today she visited the medical oncologist who said it could be stage 4 because it was on her liver. But the surgeon had told us it was on top of her liver and he removed it all. All visible cancer has been removed. This is very unclear, she also does not always tell the truth and exaggerates. They told her she starts chemo in 3 weeks, which is great. Knowing that there is a next step - She is just ready to lay down and die no matter what good news we give her. She has a loving husband for over 35 years, 3 kids who all need her (I being one of them). They offered her carboplatin and taxol, and mentioned avastin as well. They also offered her a clinical trial which she said absolutely not to. She is at the best hospital Sloan Kettering and was treated by world renowned surgeon who pushed ahead her surgery. The medical oncologist also is supposed to be amazing. I know that does not equal remission, but she is lucky enough to live near an amazing facility with experts all around

She said she is no way doing avastin because of side affects and that it only increases your life by 5 months. I told her "Mom, you are ridiculous. These are just numbers and who knows how it will affect you?" She is a medical professional herself, I do not understand what is wrong with her. She is only 63 years old, was always in excellent shape, has never ever had a medical issue in her life. The cards in her favor especially that she had an optimal debulking surgery. She is acting helpless and has told my sister and I to give her to May to enjoy the end of her life.

Am I missing something? I am getting married in two months and she even returned the shoes saying she will not need them. How do I encourage her to do the clinical trial, the avastin and everything possible. What do I do to convince her that this is not the end? I see many ladies on here surviving over decades. This will not and cannot be the end for her. We are rooting for her, and will push her if she cannot push herself.

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Hi my lovely, sorry to read your post, it is a scary place for you and everything happening so fast, but glad mum has had her surgery so now it is onwards and upwards. I feel it is quite normal to feel down and giving up, in also did but when my chemo started I got my big knickers on and decided to fight as hard as I could! I am stage 4 with liver mets, diagnosed may/June 2017 after feeling off it for a short time. Had debulking surgery then about 5 weeks later started carbo/taxol every three weeks. It is hard but doable, I had few side effects, mainly first week tiredness, joint pain but then picked up and got back on my horse!! After four doses of chemo I went on avastin and my ca numbers remained good and low, unfortunately they started to rise after 9\10 months, ct scan showed lived mets so now I'm back on taxol/carbo again and hopefully in Feb will be going on a parp inhibitor. It was also discovered I am brca2 which unfortunately my only daughter has inherted so she is going through hysterectomy and bilateral breast removal!! Once your mum is on Ber treatment I am sure she will feel that she is doing something positive and on this site younwill find ladies who are stage 4 and have had years of life even if it has recurred. You keep strong, push her along til she gets her feet and I am sure she will do well. Just a quickly about avastin I found it totally tolerable, so good luck to mum and you take care of yourself also. From a mothers perrspective when first diagnosed you fear for your kids wellbeing and fear their worry so think itnis easier to jus t go and they will adjust but that feeling goes once treatment starts. She is in good hands with the sounds of it and has a lot to live for. Tell her to Go Girl!!! Use thisnsite, itnis wonderful, blessing a to you all, joanie

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Hi, Joanie. So sorry you are going through this during what is supposed to be a very happy time for you. Right after surgery itself, you feel incredible destroyed. Mainly the pain and then the mind effects of the pain killers. Once the pain subsides, then the horror of the OC starts to play havoc on your mind. Give her some time and focus on your upcoming wonderful day. They can even delay the treatment until after your wedding.

I live 20 minutes north of Sloan and it is one of the best in the States! People fly in from all over to be seen there. I ended up at Yale New Haven only because I knew someone there.

Sloan will offer a team of people who will talk to your mom and counsel her until it sinks in that she will be ok. She will find that inner strength.

Sending you very positive thoughts. We are all here for you. Good luck with your wedding!

It will be wonderful and don't return your mom's shoes...something tells me she will be there. XOX

Marisa

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Hi Lind. Sorry to hear your mom has been diagnosed with OC, but good to hear she had successful surgery. Your love for your mom shines through in every sentence you write. As does the pain and fear all of our loved ones have to go through.

It's kinda hard to explain, but at the moment, your mom is on a planet of her own. She will need your continued support, but first and foremost she is the one who has to come to grips with a stage 4 diagnosis, and the fallout from major surgery.

Personally, I was almost ready to drive to Switzerland right away, in the first days following my stage 3 diagnosis, and it took about 6 months before I dared to plan something that was to happen more than a week in the future again.

She needs to be ok with her chosen treatment plan... not necessarily with the one her family chooses for her. These days, it might be a viable choice to e. g. consider taking only Avastin (I'm on it ; so far no major issues), or Avastin plus chemo, or just simple Aspirin... or maybe all she needs is a bit of recovery time, before she re-evaluates the choices and finds she is ready to take on chemo or Avastin after all.

One way of looking at it is also considering what she has to lose by trying treatment. 5 extra months of a relatively good life, if she tolerates treatment reasonably well, is nothing to sneer at. If it becomes unbearable, she can still stop or take a break.

My mom stopped taking Tamoxifen shortly after her BC surgery and radiotherapy. I freaked out. Couldn't understand why she would not want to max the chance of survival. But it is her life and her choice. It's been about 5 years since her diagnosis, and she is still clear (while I recurred, hah).

Wishing you and your mom the best. Maus

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HI Lind you must be in the tri state area we are as well. My sister was diagnosed as a 4a in January. 3 strong chemos, carbo, taxol and avastin then she had optimal debulking surgery in may at rutgers cancer institute and has been deemed cancer free since may . She finished her strong chemo in sept. She is now on maintenance med, avastin every 3 weeks. She has one down day then bounces back well. She is able to ski again and go riding. Please let mom know to not give up she also has best case scenerio. She needs to make plans and go on with life.

Wishing you all the best, nancy

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Thank you for the positive words. And best of luck to your sister!

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Hi Linda. Please tell your mum not everyone has side effects on Avastin, I had nearly 4.5 years before a recurrence after Avastin and still worked full time whilst on it. I hope for all your sakes your mum makes the decision that is right for her. Shes in a scary place right now and I totally get where she is coming from but its worth the effort xx

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I remember this scary place, and when I was told what was wrong I didn't think it was worth bothering with the treatment! I am 3 years on and have a good quality of life, although I know the cancer returns and needs to be treated again. Avastin was a winner for me - I even went skiing on it. I do hope your mother finds the courage to go ahead. The way I saw it, there were so many health professionals there to help, and I felt very privileged that they wanted to do that for me to prolong my life.

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Hi Lind58

Sorry to hear that you and your Mum are dealing with this.

I was dx stage 4 in 2015 and it is a really hard thing to get your head around. I suspect your Mum is still in the first phase of this and has not yet fully accepted that this is happening. Don’t push too hard...if she is expressing her fear and despair that is probably a good thing, hopefully she will come through this and begin to grapple with the reality over time. Meanwhile her chemo will start and she may meet others in the same boat.

Despite having mets in my lung and not being suitable for the op until I had done 4 cycles of chemo..three and a half years later I am well and living a normal life.

Your Mum is grieving for her old life but once she has done that she will begin to see that she is still herself and has a great family around her xx

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When I was diagnosed I assumed I did not have long to live, didn't think I had the courage to have the treatments the doctors were suggesting, & thought I wouldn't live long whatever they tried. But I calmed down & started treatment. That was January/February 2008, so nearly 11 years ago. I hope your mum is able to decide to try the treatment she feels is best for her. Di

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This is a tricky one; as her family, you want her to have any and every treatment going so that she is still there for you for longer. That's a perfectly natural reaction, of course, families often react in this way. However, its your mother who has OC; you say she was a medical professional, but not what kind of professional. If it was in the oncology field, she won't be the only medical person involved in that field who refuses various drug treatments on offer, it is not uncommon. I know someone who used to be a chemotherapy nurse who herself refused chemo when she got cancer; a diagnosis of ovarian cancer is particularly difficult, for they are fully aware, at the later Stages, its a matter of ongoing treatment, not a matter of cure.

Your mother needs time; time to take on board what's happened and to adjust emotionally, at which point she may decide to take whatever treatment is going, or choose to have some treatments but not all, or no treatment at all. I know this is hard to hear, but it's her life, and she has the right to choose precisely what she does next. All you can do is offer her support and love (but not pressure) from the sidelines, and allow her to choose what she thinks is best for herself. At the moment, it sounds like she's not prepared to take any further treatment, and is readying herself to depart- but that may change. Or not - I myself only had the surgery and decided to refuse chemo and avastin (given I was Stage 4b), so some of us, family notwithstanding, do make that choice. I was lucky enough to have an adult son who fully supported me in whatever choice I made; he'd rather I was around for a lot longer, but fully understands that chemo and avastin are not a cure, that they have side effects, and may or may not extend my time here. As it happens, though I apparently should not be, I'm still here and still well, 10 months later...though its fair to say I haven't carried on as usual, I have made various changes in my life, including diet. It may be that at a later point, I do decide to accept some treatment, depending what happens next, but as it stands, I'm happy with no treatment.

I know this is difficult for you, and wish both you and your mother well.

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She sounds depressed by the news--I don't blame her. On her behalf I also refused Avastin for the same reasons she did. Also I've read Avastin works best on suboptimally debulked women. I hope she is doing the carbo/taxol--which is no picnic but at least it's only 6 cycles. Bu then she will have time to think more and possibly she will be in remission.

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Hello Lind

I am writing from the UK and am more than happy to share my experience if it is any help to your mother.

In 2014 I was 58 years old and hospitalised with breathing difficulties - fluid on the lung. After several months of chest drains and more hospitalisations the fluid was identified as gynaecological. Stage 4 ovarian cancer.

I had a 17 cm! tumour on my ovary which was so big it was declared inoperable. The prognosis was grim. My only choice was a regimen of carbo/taxol. I had read up quite a lot before meeting the oncologist so asked about Avastin as well as a frontline treatment. At that time in the UK we had a special Cancer Drugs Fund which funded Avastin as a front line treatment...which my oncologist prescribed for me. This has subsequently been de-listed so is now only available for recurrence (and if you haven't previously had it) ....so I was extremely lucky that my cancer occurred when it did.

The reason I say I was lucky was because I went from CA125 markers of 725 and a tumour of 17 cm down to 445 after 1 infusion. And then down to 220 and my tumour shrank to 7 cm after 2 sessions...and thereby became operable! I had major debunking surgery in Sept 2014 and 4 more sessions of chemo of all 3 - the carbo/taxol and Avastin. Thereafter I continued to have Avastin for another year....finishing at Christmas 2015. (I believe the protocol is different over there and patients continue on maintenance Avastin in perpetuity.) Here it is not funded for so long as it costs $25,000 per year per patient; and my oncologist also believes it is better for patients to minimise drug intake where possible.

And perhaps most important I can categorically say that when I was on the Avastin alone the side effects (for me) were absolutely minimal. No nausea, no vomiting, absolutely no loss of appetite (I gained weight if anything). The only significant side effect was some fatigue which would kick in about 3 days after chemo and we managed it with steroids tapering off over a week each time. I would say it hardly impacted on what I was able to do....just a few siestas mid afternoon were sometimes helpful.

Not so much on all 3 meds. Again no vomiting and only a little nausea but I was exhausted for the middle week after treatment . (It was every 3 weeks and we tackled that by reducing the amount of carboplatin a little which helped.) I also had some visual disturbance which again my one put down to the carboplatin. The only other thing I had not anticipated was how long the first session of chemo would be - as to start with they administer the Avastin very slowly to make sure you don't have an adverse reaction. Thereafter it was only a few hours each time.

I have also been left with some peripheral neuropathy....numbness in fingers and toes....again probably from the carbo. And I am aware that everyone's experience with these drugs will be different. But for me my successful surgery (I got the chief of staff happily) and being able to have Avastin have saved my life! For me it has proven to be a wonder drug.

Well worth the slight neuropathy I now have.

Personally I can't understand turning down the clinical trial either. I would have bitten their hands off for the opportunity.

But Avastin is proven. There are risks but she will be very closely monitored.

The decider for me is that I have had 4 more years of life than originally expected, and my CA125 is currently 13!

All the best for her... But my understanding that by far the best indicator of a good outcome is successful surgery by a qualified surgeon...which she has clearly already had. Good luck

Sue

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I cannot express to you how thankful I am for your message. I will share with my mom. You made my day, thank you.

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Hello Lind58. I can tell you my mom has had 7 cycles of avastin so far, with no side effects at all except for an increase in blood pressure that is now under control. Her hair is growing again after chemo and she only has to go to the hospital 1h every 3 weeks to receive the infusion. She will have it as maintenance therapy as long as there is no disease progression. I mean that the side effects are not the same for everyone, trust your oncologist. I hope this information can be useful to you. Good luck! Best,

Sara.

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I can't add much but when I was diagnosed I felt suicidal and like others was researching prices for Dignitas within a day.

I'm a psychotherapist ( or was until OC took over - and I will return to it after chemo is all finished ) and I know that for many of my clients who've been given cancer, MS or other significant diagnoses it is normal for many people to feel really angry and need to " touch the sides" . They/ we need to feel how bad things can be before we work out that it isn't necessarily an immediate death sentence and life is a series of "nows" threaded together.

Perspective can't always come instantly. It may feel different for her being older too, and maybe that perspective will come as it has for me, I think like a 25 year old sometimes ( or like a child) and have to remind myself I'm nearly 63, and am gradually getting older - sometimes mature, sometimes less so.

We do have choices though and if things get really bad I do write or draw or paint ( if the PICC line lets me) and acknowledging the bad stuff has to be done to be able to let the light in sometimes.

You can't influence her, but you can be there when she's worked some of it out or you could suggest that a counsellor could be very helpful and she may decide you're right. Or not. But its her choice.

Big hugs and I do hope things feel more relaxed soon,

Alex x

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