To Chemo or Not to Chemo, that is the question

[thescrappyhomeschooler]

Okay, I've been up on and off all night, and I truly don't know what to do, so I'm putting a poll out here to see what others would do in my situation.

 

I met with the new oncologist yesterday, and they upgraded me from a stage 1 to a stage 2 because they found some malignant cells in locations other than the ovaries, according to the final pathology report done by expert gyn pathologists at the main Cleveland Clinic campus. This was then reviewed by the tumor board (which is a bunch of doctors). So, I feel pretty confident that the pathology report is accurate. My tumor was of a low grade, slow growing variety, although during surgery, the doctor thought it was aggressive due to the massive size of it.

 

Here't the thing- the doctors recommend chemo in a case like mine. However, in a case like mine, they are also pretty sure the chemo is not that effective. Because my situation is extremely rare, there are virtually no studies or stats to help make a decision. The only number they can give me is that 30% of women in my situation do not have recurrences after chemo. There are no stats on women who don't have chemo.

 

So, what do you think you would do in my situation?

[BigMamaBird]

Oh dear. I don't know what I'd do in your situation. But I pray that you find peace in which ever decision you make.

 

:grouphug:

[RoughCollie]

In your situation, I'd have chemo -- thinking better safe than sorry. :grouphug: :grouphug: I'd do alternative therapies as long as there was no risk they interfered with chemo.

[curlylocks]

In your situation, I'd have chemo -- thinking better safe than sorry. :grouphug: :grouphug: I'd do alternative therapies as long as there was no risk they interfered with chemo.

 

:iagree:

[kitten18]

Okay, I've been up on and off all night, and I truly don't know what to do, so I'm putting a poll out here to see what others would do in my situation.

 

I met with the new oncologist yesterday, and they upgraded me from a stage 1 to a stage 2 because they found some malignant cells in locations other than the ovaries, according to the final pathology report done by expert gyn pathologists at the main Cleveland Clinic campus. This was then reviewed by the tumor board (which is a bunch of doctors). So, I feel pretty confident that the pathology report is accurate. My tumor was of a low grade, slow growing variety, although during surgery, the doctor thought it was aggressive due to the massive size of it.

 

Here't the thing- the doctors recommend chemo in a case like mine. However, in a case like mine, they are also pretty sure the chemo is not that effective. Because my situation is extremely rare, there are virtually no studies or stats to help make a decision. The only number they can give me is that 30% of women in my situation do not have recurrences after chemo. There are no stats on women who don't have chemo.

 

So, what do you think you would do in my situation?

If the tumor board (not just one doctor) recommended chemo then I would definitely have the treatment. :grouphug:

[elegantlion]

If the tumor board (not just one doctor) recommended chemo then I would definitely have the treatment. :grouphug:

 

:iagree: :grouphug:

[Cindy in FL.]

I would probably go with the chemo based on the tumor board's recommendation.

 

Cindy

[texasmama]

In your situation, I'd have chemo -- thinking better safe than sorry. :grouphug: :grouphug: I'd do alternative therapies as long as there was no risk they interfered with chemo.

 

:iagree:In your situation, I would do whatever I thought would give me the best chance of kicking cancer/long-term good outcome.

 

:grouphug: and prayers for you.

[Spryte]

:grouphug:

 

In your shoes, I would do chemo, along with supportive, alternative therapies.

 

What a hard decision. You will make the best choice you can. :grouphug:

[DawnM]

This.

 

In your situation, I'd have chemo -- thinking better safe than sorry. :grouphug: :grouphug: I'd do alternative therapies as long as there was no risk they interfered with chemo.

[momtoamiracle]

I would do chemo..

 

 

 

:grouphug:

[Starr]

I think I would do the chemo but I wouldn't want to. :grouphug:

[AnnaM]

I can't say 100% that I would do this if I was actually in your position, but if the cancer is slow moving and you could try some other natural things first, I think I would do that. I think you have to carefully weigh the risk of the side effects of chemo, with the reward of what it could do for you and make a very personal decision. We will keep you in our prayers as you have to make such a tough decision.

[Shellydon]

I don't know. I would look at the megadoses of Vit. C given via IV for sure though.

[Remudamom]

Prayers.

[Parrothead]

 

The only number they can give me is that 30% of women in my situation do not have recurrences after chemo.

Does this mean that 70% of women in your situation do have recurrences after chemo?

[Donna]

I would do everything and anything possible to give myself a chance at the best outcome...chemo and alternative therapies that didn't interfere.

[Denisemomof4]

Oh my gosh. What an extremely difficult scenario!

 

someone here had cancer and swore by....... Was it apricot seed? I don't remember if they also used this with chemo.

 

I have read GREAT things about essiac tea and a macrobiotic diet. Have tons of those green juices. Taste doesn't matter right now.

 

I am going to go see if there is anything out there for essiac tea and ovarian cancer but you can read up about the stuff at essiacinfo.org.

 

 

Another thing is to cover all bases, do the chemo but do as much other stuff as you possibly can (natural) to compliment the chemo (some things are NOT recommended) and stuff which can interfere can be done later.

 

I didn't vote because this is too a difficult scenario for me to consider voting on. I'd have to do a ton of research qnd have time to process it all.

 

I can't tell you how sorry I am.:grouphug::grouphug::grouphug:

[Lizzie in Ma]

:grouphug:

 

In your shoes, I would do chemo, along with supportive, alternative therapies.

 

What a hard decision. You will make the best choice you can. :grouphug:

 

:iagree:

:grouphug::grouphug:

[Georgiana Daniels]

:grouphug::grouphug: I think I would take the chemo. Trust your instincts for what's best for you.

[ocelotmom]

I would want more information.

 

How time-sensitive is this? Do you realistically have time to try alternative therapies first? What other options (standard or alternative) are available? What specific chemo protocol are they recommending, and what are the short and long term side effects?

 

If chemo was a short-term unpleasantness, no matter how major, I'd definitely choose that. But it can have serious long-term, life-limiting side effects.

 

I'm not saying chemo isn't the safest option. Maybe it is. But I'd want to be reasonably sure that the treatment wasn't going to worsen the situation.

 

(That said, if further info simply wasn't available and it was time-sensitive, I'd probably go with the chemo.)

[Tap]

If the tumor board (not just one doctor) recommended chemo then I would definitely have the treatment. :grouphug:

 

:iagree:

[Laurie4b]

Chemo is nasty, but I would choose it. There is some recent thinking now that you can make chemo more impactful on the cancer by fasting before and for a period right after the chemo. (You'll need to google that. I don't know that they've validated it. However, the thinking behind it makes sense and it doesn't seem like it would hurt. The thinking is this: The chemo cells do not have the resiliency of normal cells. Plus, they grow fast and need higher levels of nutrients. Starving them before chemo and while the chemo is hitting makes them more vulnerable to its effects. ) One thing that there is more research on is the importance of NOT taking in high levels of vitamins, etc. during chemo. Again, because the chemo cells are growing faster, they suck in the protective effects of the nutrients and that helps shield them from the chemo. The extra nutrition would of course help shield your normal cells, too, but they will recover faster. Research it and ask your onc about it. This site has some info on the not overdoing the supplements or even nutrition in your food: http://foodforbreastcancer.com/ It lists all the studies any of its recommendations are taken from.

 

Take care to manage your stress levels to the very best of your ability because managing your stress takes away a major source of inflammatory responses in your body. So exercise, journal, pray, connect with your social support system, etc. This and what I described above are alternative therapies (I voted chemo plus alternatives) , but check anything you do with your onc. You don't want to be inadvertantly supporting the cancer cells. Some cancer centers have specialists in integrating chemo with alternative therapies. Does yours?

 

Exercise during chemo.

 

After chemo, go with full-press health goals like super nutrition.

 

An encouraging story: I have a co-worker in her 50s who had a 12 pound malignant tumor removed from her ovary over 20 years ago. She went through hellacious chemo (they put her on a table that moved, got the chemo into her abdomen and moved the table to swish it around; the chemo she got through IVs made her puke as soon as it hit her bloodstream, etc.) but she has been cancer free all these years. A miracle, really.

Edited November 1, 2012 by Laurie4b

[SonshineLearner]

I would suggest Chemo. Seriously, it just stinks... it's poison, but for anything ovarian related, I would suggest it. I already pm'md you a while back, I think. BUT, I would suggest having metronomically measured chemo. Basically you have it 2x as often, twice as much.

My mom's doctor has been so impressed with the results, that she's commented more than once that she's going to have to review protocol for her other patients.

When you do chemo, they see your numbers and then how it's doing. You'll know in pretty short order how your count is.

Please consult a Oncologist Naturopath for immunity/health support while you're undergoing this... And think about The Modified Citrus Pectin

the place I got the MCP was Life Extension Foundation, LEF.org

I have a whole email that I've made about health things, if you want it, from our studies...

Also, my mom has a port in her arm which has been MUCH better than other choices...

I'm truly, so very sorry about this... but I think for most everyone that is at this spot, chemo gives the best chance...

[celticmom]

I can't say 100% that I would do this if I was actually in your position, but if the cancer is slow moving and you could try some other natural things first, I think I would do that. I think you have to carefully weigh the risk of the side effects of chemo, with the reward of what it could do for you and make a very personal decision. We will keep you in our prayers as you have to make such a tough decision.

 

:iagree:

[celticmom]

I don't know. I would look at the megadoses of Vit. C given via IV for sure though.

 

:iagree:

[Denisemomof4]

I have found that what ever I'm dealing with, speaking to PEOPLE (not always medical) who have BTDT are my greatest source.

 

Two links I thought I'd pass on (not knowing if they are good or not)

 

http://cancerfighter.wordpress.com/2012/10/22/julies-ovarian-cancer-cure-story/

 

http://www.fightingcancer.com/

 

The second lists a FB group. I would definitely get involved with some online groups, remembering to sift through and thoroughly research everything.

[Heatherwith4]

I think I would do the chemo, even though I know it sucks. :grouphug:

[walkermamaof4]

I said chemo with natural alternatives. I have a friend who was involved in the study at Wake Forest of the Natures Pearl muscadine grape product. It was proven to stop the growth of tumors. The fda won't let them publish this bc/ they didn't pay to do the study through the fda or some such thing. I trust Wake Forest as a credited source and honestly don't trust the fda. So, if it were me I'd be taking the 9 pills of natures pearl that the study recommended. I can get you a link to the study I think. I don't sell it or take it. I just know the guy who helps with it and I do trust him.

[OnTheBrink]

When I had malignant melanoma, my oncologist was very pushy about getting the chemo. I was not comfortable with how aggressive he was about my getting this, considering I was staged at level 2b. I got a second opinion and that oncologist said I was really in a gray area and could go either way. I did a LOT of research about interferon (the chemo medication) and decided to forego it. In my particular situation, it was considered ineffective for melanoma and the only reason I would be in the category to get it was due to the size of the tumor. All other factors would not have put me in the category to get the chemo.

 

So, I declined it and started doing a lot of immune system boosting things to relieve the stress on my immune system. I cut way back on sugar (it feeds cancer cells), I drank spring water, ate healthier, cut back on chemicals in household cleaners. I took steps to relieve stress.

 

The surgeon got all the tumor out, and the cancer had not spread to the lymph nodes, so I was in a good place as far as recovery goes.

 

I don't think anyone can really tell you what to do. I'd listen to your doctors but advocate for yourself, too. Do research on the chemo they want to use and how effective it's proven to be, and eliminate as much stress as you can. Do whatever it takes to boost your immune system and if you go with the chemo, get some support set up for you. Help with chores, meals, kids, etc. Take this time to heal and recover. I think that's the best way to overcome this.

 

Best of luck to you. :grouphug:

[thescrappyhomeschooler]

Does this mean that 70% of women in your situation do have recurrences after chemo?

 

Yep. This is why I'm seriously considering not doing chemo. It seems like either way, the chance of recurrence is good, so why poison myself when I actually feel pretty good?

 

Plus, I've done my research. There isn't any research. Only about 2,000 women a year are diagnosed with my kind of tumor. Not enough financial incentive to study this.

Edited November 1, 2012 by thescrappyhomeschooler

[I.Dup.]

Yep. This is why I'm seriously considering not doing chemo. It seems like either way, the chance of recurrence is good, so why poison myself when I actually feel pretty good?

 

In this case, I would not do chemo. I'm not sure I would ever do chemo, to be honest. I just have not seen good outcomes from chemo.

[Halftime Hope]

My brother had non-hodgkins lymphoma with T- something something with a large abdominal tumor.

 

It was slow growing, and he was young and in generally good health, so he and his wife opted to try alternative therapies first. The results were mixed, holding for awhile, then finally showing a slightly increased glucose uptake rate (I think), so they finally decided to pursue chemo.

 

The results of the chemo were dramatic, and he has been cancer-free now for awhile. They thought his body did very well during the chemo due to the months of taking such great care of his body before they began his chemo.

 

He was helped greatly in his decision on what to pursue by reading and consulting with Ralph Moss, a well-known cancer treatment journalist. (?) I'm not quite sure how one would describe Moss, but he keeps abreast of treatment and results in both the naturopathic and the pharmaceutical worlds. His knowledge helped my brother sort through what would be effective and what had a lesser chance.

 

I hope you find the answers you need.

[walkermamaof4]

In this case, I would not do chemo. I'm not sure I would ever do chemo, to be honest. I just have not seen good outcomes from chemo.

 

Actually, maybe I should recind my vote. I've not seen good outcomes from chemo either. But the folks I know who did it did not move to a whole30 type of diet, which I think matters. I think the diet is key.

[SonshineLearner]

Yep. This is why I'm seriously considering not doing chemo. It seems like either way, the chance of recurrence is good, so why poison myself when I actually feel pretty good?

 

Plus, I've done my research. There isn't any research. Only about 2,000 women a year are diagnosed with my kind of tumor. Not enough financial incentive to study this.

 

The newest way of thinking about life after diagnosed is "Living with Cancer".... Who cares if you've been diagnosed if you're here for another 40+yrs :)

 

Cancer cells do have the potential to grow very quickly, which is why keeping the chemo treatments low dose but more often can work. If it is anything like my mom's chemo, she has only felt sick a couple of days and her energy level is probably around 90% or so of where it was pre-chemo.

 

Her only real look that has changed is thin hair, which is sad but not worth having her die sooner. She has made it as long as her original prognosis. She caught it much later and it was different than yours. But seriously, I know how scary it is.... from my perspective.... and we have always been so natural. BUT, it's just nothing to leave alone....

 

Hugs...

[Starr]

Yep. This is why I'm seriously considering not doing chemo. It seems like either way, the chance of recurrence is good, so why poison myself when I actually feel pretty good?

 

Plus, I've done my research. There isn't any research. Only about 2,000 women a year are diagnosed with my kind of tumor. Not enough financial incentive to study this.

 

 

30% isn't nothing. :grouphug::grouphug::grouphug:

[LarlaB]

Yep. This is why I'm seriously considering not doing chemo. It seems like either way, the chance of recurrence is good, so why poison myself when I actually feel pretty good?

 

Plus, I've done my research. There isn't any research. Only about 2,000 women a year are diagnosed with my kind of tumor. Not enough financial incentive to study this.

 

Based on these comments alone...I would not do chemo.

 

But in full disclosure, at this point, I'm more convinced about the efficacy of natural alternatives (drastic diet changes, lowered stress & inflammation, increased immune system) than I am about chemo.... I know if flies in the face of traditional medicine, but I put more confidence in natural alternatives than standard treatment protocol at this point.

 

:grouphug: and prayers to you as you make this decision....mentally & emotionally, you need to be at peace with what you decide- certainly, there is fear & stress involved in any decision like this, but praying for peace & confidence to accompany you on this journey

[justasque]

Do the research. Read the studies they are basing their recommendations on.

 

Right now you know:

--30% who do the chemo don't have a recurrence.

--Presumably that means 70% who do the chemo do have a recurrence; no data on how bad the recurrence is.

--Presumably 100% who don't do the chemo don't have the 30% chance of cure through chemo.

 

You don't know:

--What are the possible down sides to chemo? Is there any chance it will make things worse?

--Are there other treatment options that have a better-than-30% chance of success? (Presumably not, as they would have suggested those as an option.)

 

Right now, the only path they've given you that has a chance of leading to no recurrence is to do the chemo.

 

To put the 30% in perspective, you need to find out more about the side effects and possible downsides.

[In the Rain]

:iagree:In your situation, I would do whatever I thought would give me the best chance of kicking cancer/long-term good outcome.

 

:grouphug: and prayers for you.

 

:iagree::grouphug:

[Happy]

I'd vote for chemo with careful alternative options to support you.

 

In fact, I did vote for chemo for myself. Breast cancer. I did five long months of mean stuff this year. There are great meds for helping cope with chemo side effects these days, but it's no fun.

 

In your case it is harder to choose. I still think chemo would be the route I'd take. Just knowing some cancer cells were floating around my body like errant weed seeds looking for a place to germinate gives me the willies.

 

I was not allowed to take vitamins during chemo. My onc wanted me to avoid Vit. c and e, and fish oils. As someone noted above there is gathering research that hungry cancer cells suck those up faster.

 

I believe alternative therapies can be useful in conjunction with regular medical treatment. I'm making some changes to my diet now that I've recovered (nearly) from chemo. (the motto during chemo is just survive the chemo--eat what you can when you can.) Reluctantly, mind you, because I'm feeling kinda selfish and needy just now and I WANT Halloween candy. :tongue_smilie: I believe I came through chemo as well as I did because I was in reasonably good shape physically.

 

One of the reasons I went for a check up and long overdue mammogram last fall was because Steve Jobs died. When he was first diagnosed with his cancer (pancreatic?) he opted for alternative treatments only. After nine months, his cancer had spread and he started conventional treatments. It was said that had he not given the cancer a nine month head start, he might still be alive.

 

When I heard that I realized being afraid of what might be found on a mammogram was giving the disease a head start. My cancer didn't make tumors that can be felt easily so detection by mammo is the only way. Mine had spread to one lymph node. With my family history and this news, chemo and radiation were scheduled.

 

I wish you blessings on this journey. If I can help you during your chemo (should you go that way) in any way, shoot me a PM. No matter what your decision, you don't have to endure it alone. Even a long distance, virtual friend is a good thing.

Edited November 1, 2012 by Happy

[justLisa]

I have tried to think of what to say.

 

If it is a very slow growing tumor, and they don't think the cancer has a chance of spreading, then I think I would wait. Chemo is not very effective at all with slow growing tumors and it can be so difficult to get through.

 

It's so hard when there is just no research to back things up. I think sometimes there is just nothing else so they say chemo.

 

:grouphug::grouphug::grouphug::grouphug:

[justLisa]

And also :grouphug::grouphug: for everyone who can give Lynne real life experience sympathies.

[I.Dup.]

And also :grouphug::grouphug: for everyone who can give Lynne real life experience sympathies.

 

:iagree: And hugs to you, Lynne, too. Prayers for all of you.

[Susan C.]

My tumor was of a low grade, slow growing variety,

 

Here't the thing- the doctors recommend chemo in a case like mine. However, in a case like mine, they are also pretty sure the chemo is not that effective.

 

I voted no chemo because of the bold with a qualification. If there are markers for your tumor. If so, then do regular blood work to make sure they don't go up. That will bring peace of mind. Some cancers respond well to chemo, some do not. A tumor board said "not that effective." Chemo is hard on you. I would also have a very clean diet, and find a good (but not too out there) alternative MD that is comfortable with watching. One that isn't on board will keep stress levels high, which is not good.

 

Does the board know (don't know correct terms..) what feeds this type of cancer? I have read of some women w/breast cancer, estrogen fed, that opted to have ovaries out vs. chemo, which is also proactive.

[Liz CA]

Good advice IMHO. I had a similar scenario and mine was estrogen fueled.

[TGHEALTHYMOM]

:grouphug:

 

Praying for you!

[Momma2Many66]

Lynne,

My now 24 year old daughter experienced this almost exactly 4 and a half years ago. She was found to have a very large tumor on her ovary that was the size of a small watermelon. My daughter was only 19 years old at the time and had no family history of ovarian cancer and never used fertility meds or any other things that could be symthomatic for ovarain cancer. At the time, she never even had been sexually active in her life. The gynecology doctor that we used was wonderful and very kind and caring and he had a incredible gynecologist oncologist in with him during the surgery. They orignally thought the tumor to be "benign" since it was so very large and her age was so very young and not typical for an ovarian cancer patient. During the surgery they tested the tumor and it came back as positive for cancer. They removed the tumor at that time that had totally destroyed her one ovary and they also removed her attached falliopian tube. The doctors left her other tube and ovary intact since they were clean looking and decided to instead do a staging surgery the following week to see if the cancer had spread.

 

The staging surgery was to take samples of the lymph nodes and organs surrounding her uterus as well as to remove her appendix, since the gynecologist oncologist said sometimes these cancers can originate in the appendix. You will have to forgive me if I don't remember everything, because back then was a very tramatizing time for our whole family and I may have forgotten some things said. I spent most of my time walking around like a zombie just absorbing all the shocking news about my child. They did tell us that if the testing came back as spread anywhere, they would immediately have to remove her other reproductive organs as well as her ovary and tube that was left and she would not be able to bear children in the future. We prayed and prayed over this, because my daughter always wanted a large family. But we had peace about it that her life was much more important and she could adopt her family when she was older.

 

Anyway, the staging surgery came back in the pathological report as "all clear" and nothing had spread anywhere and had just stayed on the original tumor. She was rated as not even a stage one, since it has not spread at all. Her tumor was also called a low grade tumor even though it was so large. So the doctors has a tumor conference just like in your case and discussed whether to have chemo or not on my daughter. They decided against it since the cancer had not spread anywhere else, not even to the other ovary. They felt that in her case the chemo would do more harm then good in such a young person that was otherwise healthy and the cancer had not spread. Before the results from the staging surgery came back clear I worried over the chemo too, so I can understand your fears. But in the end, my daughter and I decided that she would get the chemo if the testing came back as spread because we didn't want to take any chances. It was not an easy decison to make and one that is very personal and really can just be made by the person involved and their family. We were so happy to find out she had an all clear and didn't have to get the chemo. The doctors did have her come in every 3 months for thorough gynecology checkups and ultrasounds to monitor her status and a CT scan once a year. She was highly monitored and watched over the whole time. She was encouraged to have all her children before 30 years old if she wanted them, in case her status changed in the future. She will continue to do these checkups until she is 5 years clear, which is in May of 2013. In the meantime she did marry 3 years ago and had a baby girl in July of 2011.

 

I am praying for you constantly and I pray that you have complete healing. Your post really resonates with me because we have been through such a simliar experience in our own family. I pray that you have peace in whatever decision you end up making. May God Bless you and keep you !

[JenC3]

I'm not going to tell you what you should do, just what I would do given the situation you've described.

 

If time is not an issue, I would wait 8 weeks, have markers taken on tumors, etc.

During the next 8 weeks I would go SERIOUS gangbusters on juice fasts, raw, immune boosters, detox enemas, etc. This would be hard during the holidays, but I would feel great and no sugar is the new normal.

 

After 8 weeks I would have my markers checked and evaluate the results and then see if chemo was the next step, etc. A LOT of healing can happen in 8 weeks and with a slow growing tumor I would be okay waiting that amount of time readying my body for chemo, if necessary. Also I would need to heal longer after such a massive surgery.

:grouphug:

Edited November 1, 2012 by JenC3

[thescrappyhomeschooler]

My brother had non-hodgkins lymphoma with T- something something with a large abdominal tumor.

 

It was slow growing, and he was young and in generally good health, so he and his wife opted to try alternative therapies first. The results were mixed, holding for awhile, then finally showing a slightly increased glucose uptake rate (I think), so they finally decided to pursue chemo.

 

The results of the chemo were dramatic, and he has been cancer-free now for awhile. They thought his body did very well during the chemo due to the months of taking such great care of his body before they began his chemo.

 

He was helped greatly in his decision on what to pursue by reading and consulting with Ralph Moss, a well-known cancer treatment journalist. (?) I'm not quite sure how one would describe Moss, but he keeps abreast of treatment and results in both the naturopathic and the pharmaceutical worlds. His knowledge helped my brother sort through what would be effective and what had a lesser chance.

 

I hope you find the answers you need.

 

Chemo works well on certain kinds of cancer- lymphoma is one of them. I'm glad he did well on the chemo. I have heard of Ralph Moss.

 

>>The only number they can give me is that 30% of women in my situation do not have recurrences after chemo.

 

Does the phrase 'in my situation' mean your age, your heritage, your type of cancer, and locations of where the cancer is? If not, I'd look for a more suitable statistic.

 

 

Where are the other cancer cells located?

 

In my situation means with my grade and stage of tumor. There were cells in the fallopian tube and in the peritoneal washings.

 

Do the research. Read the studies they are basing their recommendations on.

 

Right now you know:

--30% who do the chemo don't have a recurrence.

--Presumably that means 70% who do the chemo do have a recurrence; no data on how bad the recurrence is.

--Presumably 100% who don't do the chemo don't have the 30% chance of cure through chemo.

 

You don't know:

--What are the possible down sides to chemo? Is there any chance it will make things worse?

--Are there other treatment options that have a better-than-30% chance of success? (Presumably not, as they would have suggested those as an option.)

 

Right now, the only path they've given you that has a chance of leading to no recurrence is to do the chemo.

 

To put the 30% in perspective, you need to find out more about the side effects and possible downsides.

 

According to my world class surgeon/oncologist, there are no other statistics he can give me. I went to a cancer support center and the librarian helped me find everything we could find about low grade ovarian tumors. The information simply doesn't exist. I asked the doctor about other treatments and told that there were no open clinical trials, and no other treatments.

 

I have tried to think of what to say.

 

If it is a very slow growing tumor, and they don't think the cancer has a chance of spreading, then I think I would wait. Chemo is not very effective at all with slow growing tumors and it can be so difficult to get through.

 

It's so hard when there is just no research to back things up. I think sometimes there is just nothing else so they say chemo.

 

:grouphug::grouphug::grouphug::grouphug:

 

This is what I woke up thinking this morning.

 

I'm not going to tell you what you should do, just what I would do given the situation you've described.

 

If time is not an issue, I would wait 8 weeks, have markers taken on tumors, etc.

During the next 8 weeks I would go SERIOUS gangbusters on juice fasts, raw, immune boosters, detox enemas, etc. This would be hard during the holidays, but I would feel great and no sugar is the new normal.

 

After 8 weeks I would have my markers checked and evaluate the results and then see if chemo was the next step, etc. A LOT of healing can happen in 8 weeks and with a slow growing tumor I would be okay waiting that amount of time readying my body for chemo, if necessary. Also I would need to heal longer after such a massive surgery.

:grouphug:

 

This is what I would do if I choose not to do chemo.

 

Lynne,

My now 24 year old daughter experienced this almost exactly 4 and a half years ago. She was found to have a very large tumor on her ovary that was the size of a small watermelon. My daughter was only 19 years old at the time and had no family history of ovarian cancer and never used fertility meds or any other things that could be symthomatic for ovarain cancer. At the time, she never even had been sexually active in her life. The gynecology doctor that we used was wonderful and very kind and caring and he had a incredible gynecologist oncologist in with him during the surgery. They orignally thought the tumor to be "benign" since it was so very large and her age was so very young and not typical for an ovarian cancer patient. During the surgery they tested the tumor and it came back as positive for cancer. They removed the tumor at that time that had totally destroyed her one ovary and they also removed her attached falliopian tube. The doctors left her other tube and ovary intact since they were clean looking and decided to instead do a staging surgery the following week to see if the cancer had spread.

 

The staging surgery was to take samples of the lymph nodes and organs surrounding her uterus as well as to remove her appendix, since the gynecologist oncologist said sometimes these cancers can originate in the appendix. You will have to forgive me if I don't remember everything, because back then was a very tramatizing time for our whole family and I may have forgotten some things said. I spent most of my time walking around like a zombie just absorbing all the shocking news about my child. They did tell us that if the testing came back as spread anywhere, they would immediately have to remove her other reproductive organs as well as her ovary and tube that was left and she would not be able to bear children in the future. We prayed and prayed over this, because my daughter always wanted a large family. But we had peace about it that her life was much more important and she could adopt her family when she was older.

 

Anyway, the staging surgery came back in the pathological report as "all clear" and nothing had spread anywhere and had just stayed on the original tumor. She was rated as not even a stage one, since it has not spread at all. Her tumor was also called a low grade tumor even though it was so large. So the doctors has a tumor conference just like in your case and discussed whether to have chemo or not on my daughter. They decided against it since the cancer had not spread anywhere else, not even to the other ovary. They felt that in her case the chemo would do more harm then good in such a young person that was otherwise healthy and the cancer had not spread. Before the results from the staging surgery came back clear I worried over the chemo too, so I can understand your fears. But in the end, my daughter and I decided that she would get the chemo if the testing came back as spread because we didn't want to take any chances. It was not an easy decison to make and one that is very personal and really can just be made by the person involved and their family. We were so happy to find out she had an all clear and didn't have to get the chemo. The doctors did have her come in every 3 months for thorough gynecology checkups and ultrasounds to monitor her status and a CT scan once a year. She was highly monitored and watched over the whole time. She was encouraged to have all her children before 30 years old if she wanted them, in case her status changed in the future. She will continue to do these checkups until she is 5 years clear, which is in May of 2013. In the meantime she did marry 3 years ago and had a baby girl in July of 2011.

 

I am praying for you constantly and I pray that you have complete healing. Your post really resonates with me because we have been through such a simliar experience in our own family. I pray that you have peace in whatever decision you end up making. May God Bless you and keep you !

 

Thank you for sharing that story. That does help.

 

Thank you for all your continued prayers and thoughts, and Liz CA- a special thank you for all your info and support.

[TranquilMind]

Okay, I've been up on and off all night, and I truly don't know what to do, so I'm putting a poll out here to see what others would do in my situation.

 

I met with the new oncologist yesterday, and they upgraded me from a stage 1 to a stage 2 because they found some malignant cells in locations other than the ovaries, according to the final pathology report done by expert gyn pathologists at the main Cleveland Clinic campus. This was then reviewed by the tumor board (which is a bunch of doctors). So, I feel pretty confident that the pathology report is accurate. My tumor was of a low grade, slow growing variety, although during surgery, the doctor thought it was aggressive due to the massive size of it.

 

Here't the thing- the doctors recommend chemo in a case like mine. However, in a case like mine, they are also pretty sure the chemo is not that effective. Because my situation is extremely rare, there are virtually no studies or stats to help make a decision. The only number they can give me is that 30% of women in my situation do not have recurrences after chemo. There are no stats on women who don't have chemo.

 

So, what do you think you would do in my situation?

 

I'm really sorry you are battling this.

 

Why is Chemo recommended if it is not effective? That makes no sense to me. It better be darn effective to go through that.

 

So, unless they wowed me with the explanation, I'd probably decline, but that's me talking from my vantage point here and now. I think no one knows the right thing to do until the person doing it just knows.

 

Praying for peace and a perfect outcome.