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144480 tn?1208804925

Making the choice to refuse chemo!

For those of you who are aware, I had my left ovary removed with a large cyst that was in that 1% group of being cancerous.  I recently had CT scans and bloods and all is currently clear.
I was advised by my professor that I should take 6 wks of chemo, which obiously means all the side affects and losing me hair!  I Have refused this treatment .  
If I had of taken the treatment then I would of had a 2% chance of this returning, I now have a 50% chance and also now run the risk  of a 10 - 15% chance that I could potentially die of this.
I don't think many people understand my decision but I do not regret it. I am 22 and have yet to have children (if i will ever be able to do so).  I have alot of reasons for refusing this treatment and its not because i am scared or anything.  I have to think that i were in that 1% to get it in the first place so having the treatment and having a 2% chance of it coming back would double my chances anyway. I will not regret my choice even if it does come back, if it does it would be very early stages as I am having regular checks and bloods done every 2 wks.
Fingers crossed it will not return and best wishes to all the brave people out there who are going through the treament, you are braver people than I will ever be!
45 Responses
132752 tn?1273342273
Hi, Kelly...
I do remember your original post, and have been wondering how you were doing.  You might remember that I was the woman who posted that she was diagnosed at the age of 22, so please know that I'm speaking to you from an equitable perspective.  

I can't put myself into your head or heart.  I can tell you that I doubt that you're feeling any anxieties, fears or concerns that I didn't have when I was first diagnosed.  Those included the factor of not having had children yet (I was married one whole month when I was first diagnosed).  None of us knows what lies ahead of us, regardless of what path we choose to follow after our diagnosis.  As it turned out, I only required a second-look surgery which included an omentectomy.  The gyn/onc who performed it was especially pleased that he was able to leave one ovary and tube with my uterus...we were certain that we'd have our family biologically.  Personally, I would have readily accepted chemo and hysterectomy at that point in my life had it been prescribed.  All I knew at that point was that I wanted to do what was necessary to put me on the path to growing old with my husband.  As it turned out, we weren't able to build our family "normally" (and I use that term very liberally).  

I would never presume to put words into your mouth, but I would respectfully suggest that you get a second opinion on your diagnosis and staging...from a gynecologist/oncologist.  You deserve it, on a lot of levels.  I wish you well, and will certainly keep you in my thoughts and prayers.
peace,
Anne
144480 tn?1208804925
Hello, many thanks for your thoughts on this.
Fingers crossed all will be good but life never goes how you want it too.
My chemo were only recommended as a prevention method because my cyst burst when the surgeons were removing it so they had to class it as stage 1c.
I will have the chemo if the cancer returns and would not hesitate when being in that situation but I have had a very difficult decision to make on this and I hope I have made the right one!
108861 tn?1227246048
Hi Kelly,
     So what was the Professors reaction to your decision?  Is the Professor an oncologist Kelly?  MV
144480 tn?1208804925
The professor is the gynacologist bloke but the best one around in our area!  He sounded as tho he was expecting me to decide against it, I think due to previous conversations I've had with him and he said I seemed like an extremley tough person.  He was not overly happy as he would prefer I have the chemo , I respected his opinion but told him at this point in time I could be putting myself through all the stress when It may never return or it could come back anyway.  He wants to monitor me and do bloods regularly and he also wants me to have a laparoscomy op in 2-3 months just to check everything out.  I am fine with this choice, I have recently been through a big laparotomy op 5 wks ago and got through that fine and now feel fit as a fiddle.
Avatar universal
Kelly

Each person handles her own situation differently, and I respect where you are coming from.  I am 62 yrs. old, was diagnosed with Stage 1C in June 2002. Everyone of my biopsies came back negative, and I was told that my chances of this recurring were slim.  I had "adjuvent" therapy.  This past May I had a recurrence.  I was fortunate to have a "clean" second surgery and optimal debulking - even the washings were clear this time; nothing residual that could be seen by the naked eye - but of course I am being treated with 6 more rounds of what I had 4 years ago and then a year of maintenance therapy.  I mention all of this because I think it is important to understand that even though it "might" not come back, it "could", and you need to give yourself every fighting chance there is.  You will make it through whatever path you choose; but I agree with the post (I forgot who it was)- please get a second opinion to confirm the diagnosis and staging, then reconsider your decision. Only you can know what is right for you.  You're in my prayers!  God Bless.
144480 tn?1208804925
Thankyou for sharing your experiences.  I am content with the gynae I have and if I get a second opinion they will only tell me the same thing and will also want to give me the chemo.  I do understand that I am risking it and that it very well could come back but I have made my decision and will not regret it either way, whether it comes back or not. Alot of people may think its a silly choice but I will never take back my choices in life.
144480 tn?1208804925
Thankyou for sharing your experiences.  I am content with the gynae I have and if I get a second opinion they will only tell me the same thing and will also want to give me the chemo.  I do understand that I am risking it and that it very well could come back but I have made my decision and will not regret it either way, whether it comes back or not. Alot of people may think its a silly choice but I will never take back my choices in life.
Avatar universal
No one thinks it's a silly choice.  You're obviously a brave young lady.  God Bless!
Avatar universal
Hi kelly, maybe others here will disagree with me, but I strongly encourage you to reconsider. I lost an aunt to ovarian cancer at age 49. This is a tough disease and you need to give yourself every possible advantage at fighting it. Please seek another opinion and rethink this.

I am not trying to be harsh, but I am very concerned for you.

Linda J
144480 tn?1208804925
I do understand that it may sound like a bad idea to everybody else but this is the right choice for me and I am not going to reconsider this, I am aware of Ovarian Cancer and what it can do but at this point in time I am in the clear its just I have a 50% chance of it returning now.
108861 tn?1227246048
Good Morning Kelly,
     We are all concerned Kelly.  Let's reveiw here,  You are 22, your Doctor is not an ONC and proceeded with the laparotomy based on his assumption that since you are only 22, the dermoid would be benign, even told you that after surgery!  He did not take any precautions in the removal of the mass and it ruptured into your abdomin.  (Bagging the mass before removal)  This part is a guess, but your Docotrs complacency equated to no frozen section biopsy while you were in surgery, no abdominal washings or debulking, nothing an ONC would do as a matter of course!  You are basing your decsion on the stats your non-Onc Doctor gave you!  It is true that many stage1C diagnosis do not require post surgical chemo, when proper proceddures are followed that is.  None were in your case and you are at a much higher risk than your Doctor is letting on!  Why do you suppose he is recommending an exploirtory lap at three months!  Get a clue Kelly!  See an Oncologist!  MV
Avatar universal
Hello Cyster,

As a member of the 1% club, I have to say I agree strongly with RavenLady. I respect your right to refuse chemo, I thought about it myself. But you say you have a 50% chance of it coming back. The chemo now would be much easier for you to tolerate than it will when you get older. Face it, everything is easier when you are younger. And if it does come back, it could come back somewhere else, like your liver or lungs. It is much harder to fight in those areas. I don't want to scare you, but you really need to see a gyn/onc now. Find out the true pros and cons of refusing chemo. Your gyn may be a wonderful man, but he truly did not do a good job on your surgery. We want to keep you around a long, long time!! The Battalion will stand behind and beside you no matter what choice you make. But please make sure your choice is an informed one. It doesn't sound like you have all the facts yet.

Susan
Avatar universal
Kelly

While you truly seem to be a strong spirited young woman, I too, after reading all the posts, agree - use that fighting spirit to ensure a good end result for yourself. It is not going to hurt you to get a second opinion and seek out a good gyn/oncologist.  There are too many lose ends here.  Take all of your records, have a good meeting with an gyn/oncologist, and THEN make your final decision. You're only 22 with your entire life ahead of you.  Don't create obstacles; erase them now.  Do you have a good support network at home?  Who is there for you to bounce things off of, other than this site?  Seek those people out.  We all need someone at a time like this. I'm sure there are legions of women out here who would love to be in your position with your prognosis; so don't waste it. All of us on this site respect each others' opinions; but I am urging you to get help now; you won't be sorry later.  I continue to keep you in my prayers.
132752 tn?1273342273
Yikes!  I totally missed the recommendation of the second-look in 3 months...I'm so sorry!  

Kelly...I have to tell you that we all want to trust what our regular docs tell us.  They are the people who take care of us during lots of stuff that's routine.  What you have is very, very far from routine.  Yes, it's true that not all of us start off seeing a gyn/onc.  My first surgery was done by an ob/gyn.  Great guy...extremely steady hands...and MORE IMPORTANTLY...the humility and intelligence to tell me to get my butt to a gyn/onc for the second opinion and follow-up surgery.  

Spilling the contents of a cancerous cyst is not something to be taken lightly.  You're an adult...you'll do as you please.  However, I beg you to listen to the words of the women who have posted here.  Ovca is the leading cause of cancer-related deaths among women and...guess what...ovca doesn't discriminate against age groups!  During this past year, I learned of a young girl...had to be around 10 or 12 years old...diagnosed with an advanced state of ovca.  

If you're leery of advice that's coming to you from the US, please access
www.cancerhelp.org.uk

While it's true that a gyn/onc might give you the same recommendation of chemo that you received from your original doc, at least you'll be getting it from someone who has been specifically trained to assess and treat ovca and the other cancers that are specific our reproductive organs.  I'll tell you the same thing that I was told when I was flat out TOO SCARED to walk into Memorial Sloan Kettering the first time:
You deserve to be taken care of by the best.  You have the right to do what you need to do to reach old age.  

peace,
Anne

132752 tn?1273342273
Yikes!  I totally missed the recommendation of the second-look in 3 months...I'm so sorry!  

Kelly...I have to tell you that we all want to trust what our regular docs tell us.  They are the people who take care of us during lots of stuff that's routine.  What you have is very, very far from routine.  Yes, it's true that not all of us start off seeing a gyn/onc.  My first surgery was done by an ob/gyn.  Great guy...extremely steady hands...and MORE IMPORTANTLY...the humility and intelligence to tell me to get my butt to a gyn/onc for the second opinion and follow-up surgery.  

Spilling the contents of a cancerous cyst is not something to be taken lightly.  You're an adult...you'll do as you please.  However, I beg you to listen to the words of the women who have posted here.  Ovca is the leading cause of cancer-related deaths among women and...guess what...ovca doesn't discriminate against age groups!  During this past year, I learned of a young girl...had to be around 10 or 12 years old...diagnosed with an advanced state of ovca.  

If you're leery of advice that's coming to you from the US, please access
www.cancerhelp.org.uk

While it's true that a gyn/onc might give you the same recommendation of chemo that you received from your original doc, at least you'll be getting it from someone who has been specifically trained to assess and treat ovca and the other cancers that are specific our reproductive organs.  I'll tell you the same thing that I was told when I was flat out TOO SCARED to walk into Memorial Sloan Kettering the first time:
You deserve to be taken care of by the best.  You have the right to do what you need to do to reach old age.  

peace,
Anne

132752 tn?1273342273
I got so agitated that I clicked twice.  Sorry.
Avatar universal
I have read your post and the responses you have received from some of the women I truely care about...their frustration and concern is palpable....I have to admit I don't understand where you are comming from.....did you post here to be re-inforced or did you post here to be talked into taking chemo....what is your real reason for comming here? We can't help you if you don't let us know what it is you need or are seeking.....we want to be here for you but the conversation needs to go go both ways......feels to me like right now what you need is a net beneath you to break your free-fall....we can do that...
Peace.
dian
117289 tn?1391712825
Well, it sounds like you have made up your mind.  I think that you would be wise to listen to the women who have walked the same path you are on.  Although no one can make the decision for you, you really need to take a bit of time to really fully comprehend what lies ahead.  Statistics are just numbers, not reality.  Everyone is different and everyone responds differently.  You are in my thoughts and prayers.  Godspeed
~Tascha
110491 tn?1274481937
When I was diagnosed I was very close to refusing treatment as well so I totally understand your decision. That said, it is beyond me that someone with cancer would not see an oncologist. Please see one!
140437 tn?1215109742
I am a great believer in choice. CHOICE CHOICE CHOICE. I am also a great believer in the right to express opinion and mine is YOUR CRAZY! You have had all the understanding posts I am afraid mine is going to say Please please please have the damn chemo PLEASE

At least re-think. You dont have to listen to me - who am I - tell me to mind my own business - but I dont get it! why would there even be a choice!

Anna x
108861 tn?1227246048
I like that about you Anna, Direct!  (I've been described the same way)  I am afraid Kelly stopped listening on Friday but if another Cyster learned even one thing from this thread it was worth it! We tried! MV
Avatar universal

You sound scared and alone right now and who can blame you for feeling this.

Such devastating news is hard to take at the best of times, but especially so in one so young.

I wish you well Kelly, but remember this will never disappear.  It will always be with you.

You know you have the courage within you to do on chemotherapy.  Go on sites regarding ovarian cancer and read some real life stories.  There are many from young women like yourself with all of their life ahead of them.  They are beautiful and strong. Like you.

I wish I could wave a magic wand and banish the trouble away but the reality is you have tough choices to face.
I don't think you really have made up your mind.  You have come on here to gauge opinion.  It is overwhelmingly in favour of chemo.  

Take care and do the right thing.
144480 tn?1208804925
Hi all, I am still here and I haven't stopped listening.  I do thank you all for your opinions and understand you or close freinds and family have been through this and you all think I am making a silly choice but I am happy with my decision.  I am very fit and well right this point in time, obviously I do want it to stay that way and I have a 50% chance it will.
Just to let you know the professor I have been seeing is one of the best and he also is an oncologist.  He is going to be watching me very closley and I mean very, he wants wkly blood tests done so if anything starts to change we will know straight away.
I know some of you are wondering why I came here and its not because I need persuading to have the treatment it was purely for opinions sake and I am very gratefull for all your veiws.
I am very much aware you all think I am Nuts, but its been a hard decision but not one that I am unfortunatly going to change.
Best wishes
x
Avatar universal

Good luck to you and I hope all goes well in favour of the good 50%.

Actually I think you are taking a brave decision.  You have a good back up plan.  Most importantly a doctor you trust. All that is important.

Take care.
xx
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