Stage IIIC at 18 years old

syn

I guess I'm really just looking for advice; I stumbled across this site while searching the internet for more information. I have serous epithelial ovarian cancer stage 3c, and I was diagnosed about 2 months ago. I've since had to stop working and basically stay at home doing a whole lot of nothing, which is driving me crazy. I've undergone surgery already - however my doctor said that he wasn't able to remove anything, and that he would try the surgery again after 6 rounds of chemo. I've had two, going on three! I'm excited to almost be (hopefully) half way through!

One of the things that bothers me the most is that I feel like, because I'm only 18, my doctor isn't telling me everything that he would someone in their 60's. In other words, I almost feel like he's using "kid gloves" with me. Is there anyone else out there that's been diagnosed with ovarian cancer so young? Did you ever feel like the doctor wasn't being completely honest with you? To give you a good example, when I came out from the anesthesia from my surgery that was intended to remove as much cancer as possible, my cancer hadn't been staged yet. My mom and my bf were both there and I could tell that they weren't telling me something. It was scaring the hell out of me, and they finally told me that the doctor had said that it was much more progressed than he thought, that it was stage 3c and "everything was frozen" and he wasn't able to remove anything. Then they told me that the doctor had specifically said not to say anything to me about it... WHAT? I'm the patient, and I am legally grown. There should be 100% full disclosure and it upsets me to think that there's not, especially with a condition this serious.

Another thing I wanted to consult with you ladies about was physical activity. Before my diagnosis, I was a waitress, so I was used to being on my feet running around all the time. I had to take an extended leave of absence because I'm not supposed to move over 5 lbs or undergo too much physical activity. But how much is "too much" physical activity? I also had the habit of going to the gym 3-5 times a week for an hour or two every day and I hate how my body had reacted and the loss of muscle definition. Besides yoga, which I was told was okay to do, do y'all have any idea of activities that I can go out and do? Something to keep me busy and on my feet? I feel so awful and useless, I'm one of those high energy people that always want to be doing something, not the lazy teenager that wants to play video games all day. And yes, I tried to get into video games as well. It just felt like a complete waste of time.

Lastly, I know that I've read about how prognosis' are completely useless... But is it really that much of a crap shoot? Do we really just sit back and see where the chips fall? My doctor told me verbatim, "we will see where we are after the chemo and your next surgery"... But it's nerve racking to just wonder and WAIT to see what will happen. Does anybody have any ideas on this?

I know that this site is all over the place but I'm young so I don't really know many cancer survivors personally, and I have so many questions and just don't know who to ask. So thank you in advance to anyone who can give me any insight, and I hope you have a blessed day!

P.S.

Just yet another worry out of many... The doctors found a lump in my breast and after an ultra sound yesterday, I'm scheduled for a needle biopsy next week. Is it possible to have breast cancer and ovarian cancer at the same time? Is that a thing? Or could it be that my ovarian cancer simply spread to my breast? Either way, though I'm hoping that it's simply beniegn, I'm worried.

syn

Another question...

I still can't figure out if, now that I've lost my hair, I'm supposed to use a bit of shampoo when I shower or just use body wash. I've also noticed that my head seems really dry. Should I just use some lotion after the shower? The hygiene of a bald woman is somewhat foreign to me and I would appreciate any pointers!

 

Also, it seems that I've developed this weird thing that I could as closely as possible only describe as restless leg syndrome.  I constantly feel the need to stretch my legs. It seems that the discomfort is in the muscles, and it's seperate from the bone pain of that awful, awful, AWFUL neulasta shot. It mainly stays in my legs but occasionally spreads to the rest of my body. When I called my doc's office, the nurse said that the only thing she could figure was that it might have something to do with the steroids that I take the night before and morning of chemo. But that doesn't make sense to me. If that were the case, wouldn't I have gotten symptoms long ago, instead of almost three months into chemo and three weeks since I last took the steroids? Has anyone ever experienced it before? What did you do about it?

Alexandra

syn said:

Another question...

I still can't figure out if, now that I've lost my hair, I'm supposed to use a bit of shampoo when I shower or just use body wash. I've also noticed that my head seems really dry. Should I just use some lotion after the shower? The hygiene of a bald woman is somewhat foreign to me and I would appreciate any pointers!

 

Also, it seems that I've developed this weird thing that I could as closely as possible only describe as restless leg syndrome.  I constantly feel the need to stretch my legs. It seems that the discomfort is in the muscles, and it's seperate from the bone pain of that awful, awful, AWFUL neulasta shot. It mainly stays in my legs but occasionally spreads to the rest of my body. When I called my doc's office, the nurse said that the only thing she could figure was that it might have something to do with the steroids that I take the night before and morning of chemo. But that doesn't make sense to me. If that were the case, wouldn't I have gotten symptoms long ago, instead of almost three months into chemo and three weeks since I last took the steroids? Has anyone ever experienced it before? What did you do about it?

Syn, welcome to CSN Ovarian board

6 rounds of chemo before hysterectomy is very unusual. If I were you I would get a second opinion and make sure that your surgeon is an experienced gyno-oncologist.

Strange feeling in your legs could be caused by the beginning of peripheral neuropathy. Most chemo patients start getting tingling (pins and needles) sensation in their toes and fingers that later spreads in a sock and glove pattern. In my case it started after 3rd round of chemo.

Ovarian cancer does not spread to the breast. It is possible to have 2 primary cancers (ovarian and breast) concurrently or consequtively. It's especially likely if you tested positive for BRCA1 / 2. If you haven't been tested, I recommend that you do. At your age the risk is still very low. But don't jump to conclusions yet, wait for the results of the breast biopsy. Many lumps turn out benign.

I don't think it will make much of a difference if you wash your scalp with regular liquid bath soap. I used Clear Scalp and Hair Therapy Shampoo. You could try J&J baby shampoo, it has no scent and irritants. Chemo dries skin out everywhere, not just the scalp. Also if chemo has already shut down your ovaries (no period), lack of estrogen also causes dryness. I use Vaseline Intensive Care lotion for Dry and Sensitive skin, you can use another brand that you like. If you already experience vaginal dryness from premature menopause, get Replens. 

If you are not fatigued after chemo, physical activity is good for you. Walking, gym, swimming, yoga or whatever else you like to do. Don't lift anything heavy to avoid hernias.

I am very sorry that you have to worry about all those things at such a young age. You sound very mature and intelligent. I hope that soon you will put all of this behind you and live a long and healthy life.

Good luck to you Syn,

Alexandra

Qing2013

Sorry you have to go through this

I feel very sorry that you have to go through this at such young age. But I can feel that you are a strong person and you will fight through. When doctor says the cancer is "frozen", most likely means the cancer has "fused" with the attached other tissue, therefor, it is hard to perform the surgery. Chemo may get it shrink to the manageable size for the surgery.

I think exercise is good for everyone including cancer patients. The key is not get yourself exhausted. It not only helps your immu system getting stronger, which is very important in fighting cancer, also the exercise will help you burn extra fat. For some breast and overian cancer patients, the cancer cells are estrogen dependent. Fat tissue is another source for estrogen. MD Anderson cancer center is going to have a conference early next year about how exercise and life style affect cancer patients' suvival rate. The doctor I visited in MD Anderson encouraged me to involve moderate exercise into my daily activity whenever I can.

I would suggest you to drink a lots of water to push out the possible toxins from drugs. You may want to ask your doctor if adding multi vitamins and mineral, or at least vitamin B12, B6 for the nerve damage is good for you. This is what I am taking and feel it helped with my leg cramping, tingling, numbness feeling.

i am over 60 years old, was very active before getting this disease. Totally understand how you feel. This disease is a monster. I believe that instead of sitting back and waiting, I should do whatever I can to fight it. Even things often not under my control, I want to make sure I did everything right. This is just my opinion.

Stay strong and very best wishes to you!

Qing

123Miley

syn said:

Another question...

I still can't figure out if, now that I've lost my hair, I'm supposed to use a bit of shampoo when I shower or just use body wash. I've also noticed that my head seems really dry. Should I just use some lotion after the shower? The hygiene of a bald woman is somewhat foreign to me and I would appreciate any pointers!

 

Also, it seems that I've developed this weird thing that I could as closely as possible only describe as restless leg syndrome.  I constantly feel the need to stretch my legs. It seems that the discomfort is in the muscles, and it's seperate from the bone pain of that awful, awful, AWFUL neulasta shot. It mainly stays in my legs but occasionally spreads to the rest of my body. When I called my doc's office, the nurse said that the only thing she could figure was that it might have something to do with the steroids that I take the night before and morning of chemo. But that doesn't make sense to me. If that were the case, wouldn't I have gotten symptoms long ago, instead of almost three months into chemo and three weeks since I last took the steroids? Has anyone ever experienced it before? What did you do about it?

So sorry your going through

So sorry your going through this so young!  Its no fun at any age but 18 seems really unfair.  I was diagnosed at stage 3C over 6 years ago.  I was 41 which is statistically younger than average - but 18 - wow.  

Has anyone else in your immediate family had breast or ovarian cancer?  There could be a genetic link - same gene for breast and ovarian cancers. I really hope the lump in your breast turns out to be nothing.  My sister had breast cancer - 11 year survivor.  We both tested negative for the gene.  Go figure.  

On the bald head thing - I too had a dry scalp.  I tend to have dry skin anyway.  I did not use shampoo - just rinsed and or used shower gel I used on the rest of my body.  What I did use on my head which is awesome is aloe vera gel!  It is cooling, soothing and just really nice.  Give it a try.

I also have had restless leg syndrome. Mine seemed to be brought on by the benedryl I got with my chemo.  They gave me attivan to combat that when I was in the chemo chair all day.  

On the exercise thing - I too was in the gym 3-5 days a week and was in very good shape when I was diagnosed.  I know that helped me get through surgery etc.  but it is sort of depressing to see the negative changes happen in your body.  But physical activity is good for you!  You may not be able to do what you did for a while but keep moving and do what you feel like you can.  I maintained a bit of a workout schedule during chemo - but way scaled down.  Even if it was just a 15 minute walk in my neighborhood or a quick spin on the elliptical a couple of times a week.  Don't quit just becasue you can't do what you are used to doing.   

I don't think my doctor has really hidden things from me, however, I do know he doesn't share everything either.  That does bother me sometimes - but - I know it is best for me. Just becasue a certain something happened with one of his other patients doesn't mean it will or won't happen to me.  I feel like we don't need to waste precious energy on what MIGHT be - we need to focus on what is and what CAN be.  I hope that makes since.  But if you feel you doctor is not being up front with you talk to him about it.  You are very young and I am guessing your doctor has not dealt with many patients as young as you.   

Hang in there.  Again I am SO sorry you are facing this at such a young age.  But that will also give you an advantage in your fight.  

 

 

syn

Qing2013 said:

Sorry you have to go through this

I feel very sorry that you have to go through this at such young age. But I can feel that you are a strong person and you will fight through. When doctor says the cancer is "frozen", most likely means the cancer has "fused" with the attached other tissue, therefor, it is hard to perform the surgery. Chemo may get it shrink to the manageable size for the surgery.

I think exercise is good for everyone including cancer patients. The key is not get yourself exhausted. It not only helps your immu system getting stronger, which is very important in fighting cancer, also the exercise will help you burn extra fat. For some breast and overian cancer patients, the cancer cells are estrogen dependent. Fat tissue is another source for estrogen. MD Anderson cancer center is going to have a conference early next year about how exercise and life style affect cancer patients' suvival rate. The doctor I visited in MD Anderson encouraged me to involve moderate exercise into my daily activity whenever I can.

I would suggest you to drink a lots of water to push out the possible toxins from drugs. You may want to ask your doctor if adding multi vitamins and mineral, or at least vitamin B12, B6 for the nerve damage is good for you. This is what I am taking and feel it helped with my leg cramping, tingling, numbness feeling.

i am over 60 years old, was very active before getting this disease. Totally understand how you feel. This disease is a monster. I believe that instead of sitting back and waiting, I should do whatever I can to fight it. Even things often not under my control, I want to make sure I did everything right. This is just my opinion.

Stay strong and very best wishes to you!

Qing

Thank you!

Everyone for your feedback. First of all, I am seeing a gynocological oncologist who has been in the field for 30 years, and his partner has as well for the same amount of time. However, he did tell me that neither him nor his partner had ever worked with a patient as young as me, so I assume that this could be part of why he's hesitant about full disclosure.

My doctor advised me to wait until after my chemo was done and the next surgery completed before I took the genetic test. However, nobody in my family (though I'm unaware of my paternal health history) has ever been diagnosed with any kind of cancer except lung cancer, and the two diagnosed with that were both my great grandmother and grandfather on my mother's side after they were 70 years old, and had been smokers for about thirty years of their lives (but had both quit decades before the cancer hit).

Why is it uncommon to do 6 rounds of chemo (I'm taking taxol/carbo) before the hysterectomy? What is considered "usual" practice?

They told me that my CA125 was 598 - what does this mean? All I really know is that it's some sort of cancer marker, but that it can be affected by a lot of different things.

The exercise ideas are great... The gym I go to has a pool and that sounds like an awesome idea. The only thing is that I'm very shy about going anywhere in public without a wig on, and obviously I wouldn't be able to wear it into the pool. With the scars I can cover up with a one piece bathing suit, but the hair is something that has completely distroyed my self esteem... Though I seem to get more compliments on my wigs than I ever did before the cancer, and it takes a lot less time to get ready. Fancy that! I suppose there's an upside to everything. My doctor put me on some anti depressants, but he also described it as the "starter dosage". It didn't seem to affect me at all. Anyone have any tips on the depression/low self esteem?

I'm sure a lot of this sounds like silly teeneybopper vanity to most of you and I apologize.

Alexandra

syn said:

Thank you!

Everyone for your feedback. First of all, I am seeing a gynocological oncologist who has been in the field for 30 years, and his partner has as well for the same amount of time. However, he did tell me that neither him nor his partner had ever worked with a patient as young as me, so I assume that this could be part of why he's hesitant about full disclosure.

My doctor advised me to wait until after my chemo was done and the next surgery completed before I took the genetic test. However, nobody in my family (though I'm unaware of my paternal health history) has ever been diagnosed with any kind of cancer except lung cancer, and the two diagnosed with that were both my great grandmother and grandfather on my mother's side after they were 70 years old, and had been smokers for about thirty years of their lives (but had both quit decades before the cancer hit).

Why is it uncommon to do 6 rounds of chemo (I'm taking taxol/carbo) before the hysterectomy? What is considered "usual" practice?

They told me that my CA125 was 598 - what does this mean? All I really know is that it's some sort of cancer marker, but that it can be affected by a lot of different things.

The exercise ideas are great... The gym I go to has a pool and that sounds like an awesome idea. The only thing is that I'm very shy about going anywhere in public without a wig on, and obviously I wouldn't be able to wear it into the pool. With the scars I can cover up with a one piece bathing suit, but the hair is something that has completely distroyed my self esteem... Though I seem to get more compliments on my wigs than I ever did before the cancer, and it takes a lot less time to get ready. Fancy that! I suppose there's an upside to everything. My doctor put me on some anti depressants, but he also described it as the "starter dosage". It didn't seem to affect me at all. Anyone have any tips on the depression/low self esteem?

I'm sure a lot of this sounds like silly teeneybopper vanity to most of you and I apologize.

hello again Syn

Standard treatment in North America for advanced ovarian cancer is surgery (total hysterectomy, bilateral salpingo-oophorectomy, optionally omentectomy, appendectomy, other "-ectomies" with cancer debulking) followed by 6-8 rounds of Taxol + Carboplatin. If disease is so large and widespread that surgery is not possible after diagnosis, standard treatment is 3-4 rounds of neoadjuvant chemo followed by surgery followed by 3-4 more rounds of IV (intra-venous) or IP (intra-peritoneal) adjuvant chemo. I had 4 chemo rounds, then surgery, then 3 more chemo rounds. I have never heard before of 6 rounds of neoadjuvant chemo, but maybe it has to do with your age or your location (you sound a tad British), I really don't know.

CA125 is a protein tumor marker or biomarker found in greater concentration in ovarian cancer tumor cells. The absolute value 598 is irrelevant, what matters is the trend: as long as CA125 decreases with chemo - chemo is working. If CA125 decreases by more than 50% with each round of chemo - chemo is working well. Normal range is 0 - 35. Once you get into this range - you will be declared NED (no evidence of disease = remission). For some ovca patients CA125 is not a good marker and they are tracked with CT scans or simply based on their symptoms.

There is no rush to get genetic testing. But just so you know: there is an equal chance that mutation was passed on by mother or by father. My mother is a breast cancer survivor but she is BRCA negative. I am BRCA1 positive, which means that mutation came from my father and I also have no knowledge of his family history. My daughter had a 50% chance of inheriting BRCA1 mutation from me, but she is BRCA negative after her father.

For swimming I can suggest a rubber or silicone swimming cap and waterproof mascara. When my hair fell out from chemo I bought an insane number of wigs and enjoyed wearing them. I didn't have too many self-esteem issues as long as I had my make-up, fake eyelashes and eyebrows and didn't look like a pale zombie in the mirror. "Fake it till you make it". I would not call it vanity, at any age woman's looks is a large part of her self-image. There is a charity program called "Look Good Feel Better" for female cancer patients, where they teach you to use wigs, scarves, skin care products and cosmetics, and send you home with a big bag of goodies. Check out their website http://lookgoodfeelbetter.org/

You don't have to apologize to anyone for expressing your feeling; cancer could cause depression, fear and anxiety in anyone. Personally I am not a fan of antidepressants (they put you in a fog and tank your libido), but to each their own and many women successfully take them. I think you're holding it together really well all things considered. Maybe it will help you to join a young cancer survivors' support group in your area, to talk to the psychologist or to another adult you trust or to keep a journal / blog. Maintain your identity, don't get sucked into non-stop googling ovarian cancer statistics and do normal things that bring you pleasure: art, music, books, movies, shopping, cooking or hanging out with friends.

Stay in touch Syn. We are here if you need information, support or a shoulder to cry on.

Auntie Alexandra in Canada

syn

Alexandra said:

hello again Syn

Standard treatment in North America for advanced ovarian cancer is surgery (total hysterectomy, bilateral salpingo-oophorectomy, optionally omentectomy, appendectomy, other "-ectomies" with cancer debulking) followed by 6-8 rounds of Taxol + Carboplatin. If disease is so large and widespread that surgery is not possible after diagnosis, standard treatment is 3-4 rounds of neoadjuvant chemo followed by surgery followed by 3-4 more rounds of IV (intra-venous) or IP (intra-peritoneal) adjuvant chemo. I had 4 chemo rounds, then surgery, then 3 more chemo rounds. I have never heard before of 6 rounds of neoadjuvant chemo, but maybe it has to do with your age or your location (you sound a tad British), I really don't know.

CA125 is a protein tumor marker or biomarker found in greater concentration in ovarian cancer tumor cells. The absolute value 598 is irrelevant, what matters is the trend: as long as CA125 decreases with chemo - chemo is working. If CA125 decreases by more than 50% with each round of chemo - chemo is working well. Normal range is 0 - 35. Once you get into this range - you will be declared NED (no evidence of disease = remission). For some ovca patients CA125 is not a good marker and they are tracked with CT scans or simply based on their symptoms.

There is no rush to get genetic testing. But just so you know: there is an equal chance that mutation was passed on by mother or by father. My mother is a breast cancer survivor but she is BRCA negative. I am BRCA1 positive, which means that mutation came from my father and I also have no knowledge of his family history. My daughter had a 50% chance of inheriting BRCA1 mutation from me, but she is BRCA negative after her father.

For swimming I can suggest a rubber or silicone swimming cap and waterproof mascara. When my hair fell out from chemo I bought an insane number of wigs and enjoyed wearing them. I didn't have too many self-esteem issues as long as I had my make-up, fake eyelashes and eyebrows and didn't look like a pale zombie in the mirror. "Fake it till you make it". I would not call it vanity, at any age woman's looks is a large part of her self-image. There is a charity program called "Look Good Feel Better" for female cancer patients, where they teach you to use wigs, scarves, skin care products and cosmetics, and send you home with a big bag of goodies. Check out their website http://lookgoodfeelbetter.org/

You don't have to apologize to anyone for expressing your feeling; cancer could cause depression, fear and anxiety in anyone. Personally I am not a fan of antidepressants (they put you in a fog and tank your libido), but to each their own and many women successfully take them. I think you're holding it together really well all things considered. Maybe it will help you to join a young cancer survivors' support group in your area, to talk to the psychologist or to another adult you trust or to keep a journal / blog. Maintain your identity, don't get sucked into non-stop googling ovarian cancer statistics and do normal things that bring you pleasure: art, music, books, movies, shopping, cooking or hanging out with friends.

Stay in touch Syn. We are here if you need information, support or a shoulder to cry on.

Auntie Alexandra in Canada

Too much time to think

Thank you so much for your information! It's funny that you say I sound British, I'm actually from Nashville. I just get my grammar from my lawyer mom. It worries me slightly that my doctor isn't exactly handling my care in a "traditional" way, however, I can only try to trust his judgement as he's been practicing for so long.

My CA125 has only dropped by about 10 last I checked after two rounds of chemo and the surgery. I get it checked once a month but I go to the lab once a week to get blood drawn.

You lost me there with all the -ectomy's... My only understanding of my "game plan" was to have a full hysterectomy with my next surgery (I think? Or would there be two seperate surgeries, one for another attempt to try to remove the cancer and one to remove the organs?). I do know that my doctor mentioned that the cancer had attached to my liver, it is possible to only remove a portion of the liver, right? Or is it possible that the chemo could "save" the liver by itself? Obviously my knowledge of this infestation is extremely limited.

Another thing, my doc has me taking steriods the night before and the morning of chemo. Is that totally neccessary? I know a woman with ovarian cancer and she told me that she refused to take the steriods, but that her doctor was very unhappy with her about it. What's the purpose of taking them? Are they just to help with the immune system during treatment?

I'll definitely look into the "Look Good Feel Better" thing. It sounds awesome!

Maintaining my identity... That's a tough one indeed. I haven't exactly been sucked into the cancer whirlpool, and tend to actually get annoyed by the calls I get from long lost friends who act as if I'm going to die tomorrow, and the constant "How are you feeling? Are you ok?" questions. I know that they mean well, but I feel as if I'm now looked at as a victim, and that makes me uncomfortable. I don't want to be cancer girl. I want to be me, and I feel like people only see the cancer now. I'm getting teal ribbon blankets and teal ribbon necklaces and "**** Cancer" bags and caps and it's so very overwhelming. I miss working, and the interaction with people that my work gave me (I was a waitress, and I actually, truly loved my job). I feel as though I've lost most of the meaning/purpose in my life, and am now just trying to make it to the next day, every day. My only real responsibilities are my endless doctor appointments. I woke up this morning with a planned day of cleaning house, catching up on laundry, and going to the gym and after starting my first load of laundry and the initial de-cluttering, felt as if my entire body was one big bruise and had to go back to bed, which in itself is depressing for me. I feel like cancer has completely taken over my life!

Another thing that I'm struggling with is my family. My mom is one of the strongest and most amazing women I know. I'm so lucky to have her. But she's barely keeping it together these days and though I know that it's not my fault that I got cancer, I can't help but feel guilty for causing my loved ones so much pain, and I don't know how to fix it. She's also getting a divorce after 8 years, and she tells me that it's been a long time coming. But I can't help but feel like the stress of my diagnosis pushed their marriage over the edge. And she's buying a house and wanting me to live with her, seemingly permanently. However I have a whole other life an hour away that I don't want to leave behind, and I feel torn. I want to be there for her and make it better, but I'm an independant woman and have been since I was 16 and I worked very hard to make that happen. I don't want to leave that behind to live with my mother again. Don't get me wrong, we have the best mother-daughter relationship that I know of. We're best friends. I just don't know what to do about it. And how do you explain cancer to two six year olds? My little brother and sister just think that I'm sick, and they make rude comments in front of everyone and everyone about how "that's not her real hair"... I know that they don't know any better, but I don't know how to explain it to them. And god forbide, what if the cancer wins? I know I shouldn't talk like that, but the thought of leaving my family behind and what it might do to them, especially my mother, I really don't think they could handle it. And my mom wants to talk about cancer to me 24/7 and it stresses me out even more because all I want to do is try to ignore it and deal with it the best I can, I don't want to talk about it all the time. But I know that she needs an outlet, but it kills me to see her the way she is. Everything causes her to break down into tears and I hate to see her cry, and it's hard to be the strong one right now, especially because I can't say anything to her about it, I just have to listen, because anything that I could say would just make it worse on her. I suppose I'm actually using this site as my outlet. Thanks, Auntie Alexandria. Lol. I don't know what I'd do without you! Happy early Thanksgiving, by the way!

Qing2013

I put a cap on

I put a cap on when I go to the gym and use a swimming cap when I am in the pool. It made me feel more comfortable in the environment. 

Qing

Alexandra

syn said:

Too much time to think

Thank you so much for your information! It's funny that you say I sound British, I'm actually from Nashville. I just get my grammar from my lawyer mom. It worries me slightly that my doctor isn't exactly handling my care in a "traditional" way, however, I can only try to trust his judgement as he's been practicing for so long.

My CA125 has only dropped by about 10 last I checked after two rounds of chemo and the surgery. I get it checked once a month but I go to the lab once a week to get blood drawn.

You lost me there with all the -ectomy's... My only understanding of my "game plan" was to have a full hysterectomy with my next surgery (I think? Or would there be two seperate surgeries, one for another attempt to try to remove the cancer and one to remove the organs?). I do know that my doctor mentioned that the cancer had attached to my liver, it is possible to only remove a portion of the liver, right? Or is it possible that the chemo could "save" the liver by itself? Obviously my knowledge of this infestation is extremely limited.

Another thing, my doc has me taking steriods the night before and the morning of chemo. Is that totally neccessary? I know a woman with ovarian cancer and she told me that she refused to take the steriods, but that her doctor was very unhappy with her about it. What's the purpose of taking them? Are they just to help with the immune system during treatment?

I'll definitely look into the "Look Good Feel Better" thing. It sounds awesome!

Maintaining my identity... That's a tough one indeed. I haven't exactly been sucked into the cancer whirlpool, and tend to actually get annoyed by the calls I get from long lost friends who act as if I'm going to die tomorrow, and the constant "How are you feeling? Are you ok?" questions. I know that they mean well, but I feel as if I'm now looked at as a victim, and that makes me uncomfortable. I don't want to be cancer girl. I want to be me, and I feel like people only see the cancer now. I'm getting teal ribbon blankets and teal ribbon necklaces and "**** Cancer" bags and caps and it's so very overwhelming. I miss working, and the interaction with people that my work gave me (I was a waitress, and I actually, truly loved my job). I feel as though I've lost most of the meaning/purpose in my life, and am now just trying to make it to the next day, every day. My only real responsibilities are my endless doctor appointments. I woke up this morning with a planned day of cleaning house, catching up on laundry, and going to the gym and after starting my first load of laundry and the initial de-cluttering, felt as if my entire body was one big bruise and had to go back to bed, which in itself is depressing for me. I feel like cancer has completely taken over my life!

Another thing that I'm struggling with is my family. My mom is one of the strongest and most amazing women I know. I'm so lucky to have her. But she's barely keeping it together these days and though I know that it's not my fault that I got cancer, I can't help but feel guilty for causing my loved ones so much pain, and I don't know how to fix it. She's also getting a divorce after 8 years, and she tells me that it's been a long time coming. But I can't help but feel like the stress of my diagnosis pushed their marriage over the edge. And she's buying a house and wanting me to live with her, seemingly permanently. However I have a whole other life an hour away that I don't want to leave behind, and I feel torn. I want to be there for her and make it better, but I'm an independant woman and have been since I was 16 and I worked very hard to make that happen. I don't want to leave that behind to live with my mother again. Don't get me wrong, we have the best mother-daughter relationship that I know of. We're best friends. I just don't know what to do about it. And how do you explain cancer to two six year olds? My little brother and sister just think that I'm sick, and they make rude comments in front of everyone and everyone about how "that's not her real hair"... I know that they don't know any better, but I don't know how to explain it to them. And god forbide, what if the cancer wins? I know I shouldn't talk like that, but the thought of leaving my family behind and what it might do to them, especially my mother, I really don't think they could handle it. And my mom wants to talk about cancer to me 24/7 and it stresses me out even more because all I want to do is try to ignore it and deal with it the best I can, I don't want to talk about it all the time. But I know that she needs an outlet, but it kills me to see her the way she is. Everything causes her to break down into tears and I hate to see her cry, and it's hard to be the strong one right now, especially because I can't say anything to her about it, I just have to listen, because anything that I could say would just make it worse on her. I suppose I'm actually using this site as my outlet. Thanks, Auntie Alexandria. Lol. I don't know what I'd do without you! Happy early Thanksgiving, by the way!

Hi there

My dear you are the most literate American or Canadian teenager I know. Your mom's done an excellent job. Pardon my English as Second Language...

It will be one surgery where the doctor removes uterus with or without the cervix (hysterectomy), both (bilateral) ovaries (oophorectomy) and fallopian tubes (salpingectomy) as well as any visible cancer and parts of organs it's attached to. It could be your appendix (appendectomy), omentum (omentectomy), parts of peritoneum, parts of colon, parts of liver, lymph nodes, etc. If after surgery there is no visible cancer larger than 1 cm left, debulking is called "optimal". Optimal debulking is the most important predictor of survival, so it MUST be done by an experienced gynecological oncologist. Additional chemo after surgery is meant to get rid of any left-over microscopic cancer cells. Generally when liver is involved, cancer is staged 4 not 3C; which tells me that yours hasn't invaded the liver but may simply be adjacent to it.

You mom sounds like an amazing woman. Being a mother of a 20-year-old girl myself, I cannot imagine what she is going through seeing you sick. Divorce and buying a house are two other major stressors. Cut her some slack. But as you understand none of it is your fault. This is one situation where you need to be a little more selfish and focus on your needs and on getting better. You are a grown woman and you have to do what's right for you; if you can afford to continue living on your own don't let anyone guilt trip you. And don't push yourself too hard; cleaning house and doing laundry can wait. Or even better ask a friend or a relative to come and clean your house in lieu of teal necklaces, hats and other useless crap. As far as people annoying you with cancer talk... Most people do not know how to react to what they percieve as a terminal illness and what reminds them of their own mortality. Pretty soon the ones that are not your true friends will wear themselves out and go away. To the ones who stick around you can tell only what you want them to know. To get the conversation off the cancer topic, just ask them how they are doing and trust me, most people LUV talking about themselves. Kids can be mean and they don't understand how their jokes hurt your feelings; I think if you are able to laugh at yourself, they will laugh with you and not at you.

Happy Thanksgiving to you too!

123Miley

syn said:

Thank you!

Everyone for your feedback. First of all, I am seeing a gynocological oncologist who has been in the field for 30 years, and his partner has as well for the same amount of time. However, he did tell me that neither him nor his partner had ever worked with a patient as young as me, so I assume that this could be part of why he's hesitant about full disclosure.

My doctor advised me to wait until after my chemo was done and the next surgery completed before I took the genetic test. However, nobody in my family (though I'm unaware of my paternal health history) has ever been diagnosed with any kind of cancer except lung cancer, and the two diagnosed with that were both my great grandmother and grandfather on my mother's side after they were 70 years old, and had been smokers for about thirty years of their lives (but had both quit decades before the cancer hit).

Why is it uncommon to do 6 rounds of chemo (I'm taking taxol/carbo) before the hysterectomy? What is considered "usual" practice?

They told me that my CA125 was 598 - what does this mean? All I really know is that it's some sort of cancer marker, but that it can be affected by a lot of different things.

The exercise ideas are great... The gym I go to has a pool and that sounds like an awesome idea. The only thing is that I'm very shy about going anywhere in public without a wig on, and obviously I wouldn't be able to wear it into the pool. With the scars I can cover up with a one piece bathing suit, but the hair is something that has completely distroyed my self esteem... Though I seem to get more compliments on my wigs than I ever did before the cancer, and it takes a lot less time to get ready. Fancy that! I suppose there's an upside to everything. My doctor put me on some anti depressants, but he also described it as the "starter dosage". It didn't seem to affect me at all. Anyone have any tips on the depression/low self esteem?

I'm sure a lot of this sounds like silly teeneybopper vanity to most of you and I apologize.

Try to remember its only hair!

Medically speaking - if you have a gyn/onc treating you - you shoould be in good hands.  On the CA125 tumor marker - anything below 30 is considered normal.  Yes it can elevate for other reasons - but in that range - well you already know the answer to that as you have been diagnosed.  But as my doctor says it is only a #.  In other words 598 is not necessarily worse than say 400.  Its all about trends.  I was over 800 when I was first diagnosed. There are ladies on here who were over 1000.  None of those high #s are good - but they will watch trends as you go through treatment. Down is always good but it can jump around.  For instance if you marker goes down for a month or so and then jumps up a little bit - that does not necessarily mean the treatment is not working.  That is where that "it can elevate for other reasons" deal comes in to play.  I know that is vague and frustrating sounding - but believe it or not to some degree you will get used to the roller coaster that is ovarian cancer.  Unfortunately that is just part of it. 

My doctor put me on 10 mg of lexapro a day which was really to help with hot flashes and night sweats - worked great for that and I am pretty sure it helped me with anxiety/depression too.  If you don't feel like you are benefitting from what your doctor has prescribed - speak up - there may be something else. 

On the hair deal - although I am much older than you - I can or sure speak to this.  I always had long hair.  And it was what I thought to be one of my best features - in fact I probably worried too much about it and thought it helped to define me and who I was.  Well there is nothing like losing it all to make you adjust your thinking.  I actually never wore a wig - bought one but never wore it.  I just went with bandanas, scarves and hats.   Some ladies not only wear wigs they have tons of fun with them - Alexandra can tell you about that!  It was just never for me.  6 years later I have kept my hair short - never would have thought of cutting it voluntarilly but now that I have it I love it - so does my husband!   

Either way - here is the deal -  You have cancer and you are bald right now.  It will grow back.  But for now OWN it and be proud of it!  There is so much more to you than hair and chances are most people you know already know that.  The people who don't know you - well when they see you out and living life in spite of cancer - that says a lot more about you than your hair ever will!  So go out, go to the gym etc - with or without a wig or a cap! Remember it is only hair!  Our hair doesn't define who we are any more than having cancer does! 

 

 

Alexandra

Syn, did you get breast biopsy done?

How was it? When are results due?

Hugs,

Alexandra

lovesanimals

Alexandra said:

Syn, did you get breast biopsy done?

How was it? When are results due?

Hugs,

Alexandra

Dear Syn

I'm jumping in late to this conversation but wanted you to know that I'm sending lots good thoughts and prayers your way.  I have nothing to add to the good information provided to you by the other teal sisters, but know that I'm praying that your breast biopsy is negative and that your treatment kicks your cancer's butt.  I'm rooting for you from the sidelines!

Hugs,

Kelly

Cafewoman53

Syn

You have gotten the best advice already, I just wanted to reinforce Alexandris' advice about being selfish at this time. You are in a fight for your life your energy needs to be focused on you. You love your family of course but the best thing you can do for them is take care of you.

 Also I think there is a program where you can be matched up with someone your age who is going through a similar diagnosis, I think it it through the American Cancer Society. The women here are very knowledgeable and are always willing to help.

Your age is on your side, my oldest grandaughter is eighteen and it breaks my heart to think that you have been dealt this but your youth will help you deal with the chemo and other surgery.

Colleen

azgrandma

Cafewoman53 said:

Syn

You have gotten the best advice already, I just wanted to reinforce Alexandris' advice about being selfish at this time. You are in a fight for your life your energy needs to be focused on you. You love your family of course but the best thing you can do for them is take care of you.

 Also I think there is a program where you can be matched up with someone your age who is going through a similar diagnosis, I think it it through the American Cancer Society. The women here are very knowledgeable and are always willing to help.

Your age is on your side, my oldest grandaughter is eighteen and it breaks my heart to think that you have been dealt this but your youth will help you deal with the chemo and other surgery.

Colleen

Stay positive

Try tio stay positive it really helps. I know it is hard, but try.

My doctor counldn't remove my cervis or uterus becuase it was all stuck together, so these things do happen. Try to rest and take it easy for a few weeks and try to heal from the surgery and chemo.

I am praying for you

sk_Nebraska

Glad you are on this site

Syn, I just read the entries and am again so thankful I found this site 2 months ago. I am a 15 year breast cancer Stage 3 survivor, so have had a successful experience to bolster my resolve to beat this. Now it is peritoneal but the treatments are identical and symptoms, etc similar.  Alexandria's posts are fantastic!! We are all very fortunate to have her as an ally.  As for the hair loss, I can attest it will indeed return:) and yes there will be times you wish it had not--too time consuming. 

Definately ask your doc for adjustment in antidepressant.  It should help you sleep better and that alone will boost your spirtis.  I had a counselor at our local Medical Society's Cancer Resource center that acted as a "navigator" and I shed my tears there and she could be realistic and supportive. The fees were on a sliding scale and they took insurance.  American Cancer Society is a great resource for finding a navigator or counselor.  You will not be "doctoring" 24/7 forever--there is time off.  Right now you are tryng to care for too many people--it needs to be "ME-time". You are not leaving them, but need your energy now.

This time I have a 4.5 year old grandson and his manner of coping with my wig is different.  He wears it when he wants to be a "rock star".  I think you might try to have a short chat with your sibs and let them know that wearing the wig for you isn't as fun as they may think, so you would like them to not bring it up. Kids usually want to please and they need some direction here.

Yes, I am a retired teacher:)

Wishes for improved energy,more fun. and less anxiety. 

syn

sk_Nebraska said:

Glad you are on this site

Syn, I just read the entries and am again so thankful I found this site 2 months ago. I am a 15 year breast cancer Stage 3 survivor, so have had a successful experience to bolster my resolve to beat this. Now it is peritoneal but the treatments are identical and symptoms, etc similar.  Alexandria's posts are fantastic!! We are all very fortunate to have her as an ally.  As for the hair loss, I can attest it will indeed return:) and yes there will be times you wish it had not--too time consuming. 

Definately ask your doc for adjustment in antidepressant.  It should help you sleep better and that alone will boost your spirtis.  I had a counselor at our local Medical Society's Cancer Resource center that acted as a "navigator" and I shed my tears there and she could be realistic and supportive. The fees were on a sliding scale and they took insurance.  American Cancer Society is a great resource for finding a navigator or counselor.  You will not be "doctoring" 24/7 forever--there is time off.  Right now you are tryng to care for too many people--it needs to be "ME-time". You are not leaving them, but need your energy now.

This time I have a 4.5 year old grandson and his manner of coping with my wig is different.  He wears it when he wants to be a "rock star".  I think you might try to have a short chat with your sibs and let them know that wearing the wig for you isn't as fun as they may think, so you would like them to not bring it up. Kids usually want to please and they need some direction here.

Yes, I am a retired teacher:)

Wishes for improved energy,more fun. and less anxiety. 

I just spoke with my dr this morning about the biopsy and the chemo update. This will be short, sweet and to the point and I'll come back later to clear it up - just about to go to lunch with my mom. The lump was indeed the ovarian cancer. He said that it was very rare for it to have spread to my breast, but that it happens occasionally. He also said that the chemo didn't appear to be working.

So basically, they COULD try a different kind of chemo, but none of the doctors are optomistic about the odds of success. They're trying to do some biological testing on what they took out of the mass in my breast to see if there might be a different, viable avenue. Since it's so rare, especially with my age, perhaps there's a chance of them finding a weakness in it that they could exploit. So they gave me a rough estimate of six months to live in the meantime. And if that happens, I plan on donating my body to try to find a cure.

 

I'll pop back in later. Gonna go cry my eyes out over a rack of ribs or something.

Alexandra

syn said:

I just spoke with my dr this morning about the biopsy and the chemo update. This will be short, sweet and to the point and I'll come back later to clear it up - just about to go to lunch with my mom. The lump was indeed the ovarian cancer. He said that it was very rare for it to have spread to my breast, but that it happens occasionally. He also said that the chemo didn't appear to be working.

So basically, they COULD try a different kind of chemo, but none of the doctors are optomistic about the odds of success. They're trying to do some biological testing on what they took out of the mass in my breast to see if there might be a different, viable avenue. Since it's so rare, especially with my age, perhaps there's a chance of them finding a weakness in it that they could exploit. So they gave me a rough estimate of six months to live in the meantime. And if that happens, I plan on donating my body to try to find a cure.

 

I'll pop back in later. Gonna go cry my eyes out over a rack of ribs or something.

No way

Syn, forget rough estimates and donating body. Excuse my language, this is bullsh*t. I don't care how many years experience this doctor has, after telling an 18-year-old that she has 6 months to live, he should ask for a transfer to the nearest mortuary. Drop him. If anyone here has a reason to live, it's you.

You or your parents, pick up the phone today and make an appointment for the second opinion at a reputable Cancer Center: MD Anderson in Houston, TX or Memorial Sloan-Kettering in New York, NY or Mayo Clinic in Rochester, MN or Johns Hopkins in Baltimore, MD or Dana-Farber/Brigham in Boston, MA. Get all your medical records, pathology reports, blood test results, CT scan CD's and go there.

Ovarian cancer is rare by itself. Especially rare at young age. There were about 40 documented cases of ovarian cancer metastasized to the breast. The probability of what you are describing is so low, it's practically null. Which leads me to believe that your doctor or pathologist may have made a mistake about the primary and are treating you for the wrong cancer.

The fact that your chemo is not working, means that you are platinum-resistant. There are other types of chemo. They can switch you to Topotecan, Doxil / PLD, Avastin, Gemzar; there are several trials of new drugs being developed specifically for platinum-resistant ovarian cancer.

So eat your ribs, finish your pity party, get angry and start fighting this thing. We are all here for you.

Hugs,

Alexandra

ConnieSW

Alexandra said:

No way

Syn, forget rough estimates and donating body. Excuse my language, this is bullsh*t. I don't care how many years experience this doctor has, after telling an 18-year-old that she has 6 months to live, he should ask for a transfer to the nearest mortuary. Drop him. If anyone here has a reason to live, it's you.

You or your parents, pick up the phone today and make an appointment for the second opinion at a reputable Cancer Center: MD Anderson in Houston, TX or Memorial Sloan-Kettering in New York, NY or Mayo Clinic in Rochester, MN or Johns Hopkins in Baltimore, MD or Dana-Farber/Brigham in Boston, MA. Get all your medical records, pathology reports, blood test results, CT scan CD's and go there.

Ovarian cancer is rare by itself. Especially rare at young age. There were about 40 documented cases of ovarian cancer metastasized to the breast. The probability of what you are describing is so low, it's practically null. Which leads me to believe that your doctor or pathologist may have made a mistake about the primary and are treating you for the wrong cancer.

The fact that your chemo is not working, means that you are platinum-resistant. There are other types of chemo. They can switch you to Topotecan, Doxil / PLD, Avastin, Gemzar; there are several trials of new drugs being developed specifically for platinum-resistant ovarian cancer.

So eat your ribs, finish your pity party, get angry and start fighting this thing. We are all here for you.

Hugs,

Alexandra

Syn

Heed Auntie Alexandra or I wouldn't be surprised if she takes you in hand to one of these major cancer centers.  Please listen to her and run, don't walk, for a second opinion.  It's time to fight.

Alexandra

ConnieSW said:

Syn

Heed Auntie Alexandra or I wouldn't be surprised if she takes you in hand to one of these major cancer centers.  Please listen to her and run, don't walk, for a second opinion.  It's time to fight.

Sorry if I sounded pushy

If I didn't live in the frozen land of free healthcare and maple syrup, I would have taken this kid to MD Anderson myself. And would've grabbed some PARP inhibitors for me on my way out.

JulieBelle

syn said:

I just spoke with my dr this morning about the biopsy and the chemo update. This will be short, sweet and to the point and I'll come back later to clear it up - just about to go to lunch with my mom. The lump was indeed the ovarian cancer. He said that it was very rare for it to have spread to my breast, but that it happens occasionally. He also said that the chemo didn't appear to be working.

So basically, they COULD try a different kind of chemo, but none of the doctors are optomistic about the odds of success. They're trying to do some biological testing on what they took out of the mass in my breast to see if there might be a different, viable avenue. Since it's so rare, especially with my age, perhaps there's a chance of them finding a weakness in it that they could exploit. So they gave me a rough estimate of six months to live in the meantime. And if that happens, I plan on donating my body to try to find a cure.

 

I'll pop back in later. Gonna go cry my eyes out over a rack of ribs or something.

I totally and wholeheartedly second Alexandra.   You chase up further opinions!  An aquaintance here kept chasing further opinions and on the 4th one found someone who could and DID help!  

We are all here for you!

Julie