27 yrs Ovarian stage 3C

[Brownie3321]

I first want to share my story so that everyone is aware this can happen to young women. On July 4th, 2007 I went to the ER because I was bloated and had been experiencing abdomial pain for about a week. I had an ultra sound done and was told I possibly had endometeriosis. I was also told the ultra sound was unable to identify my uterus. I decided to make an appointment with my gyno the next day. She thought the report from ER was poor and wanted another ultra sound. The date was set for July 7th. On this day, I had already filled up with enough fluid to alarm the tech performing the ultra sound. She said there was fluid from my pelvis all the way up into my chest. She immediately had my gyno come out of surgery to come talk to me. My gyno tells me the reason my uterus was "unidentified" was because there was a 8in mass covering it from one of my ovaries. She told me I would need surgery and that I should see a specialist IN CASE it was cancer. The gynocologist/oncologist looked at my CAT scan and ultra sound and scheduled an "exploratory" surgery for July 10th. He told me the mass could be harmless given my age and no family history. My "exploratory" surgery was me waking up in the recovery room being told I had stage 3C ovarian cancer that had spread to my stomach lining and lymph nodes, a complete hysterectomy, and a bowel re-section. I am now undergoing 6 months of chemo - 3 months of IV chemo, 3-4 months of IP chemo. I have not started my IP chemo because I had complications with my surgery that led me to a colostomy. I am very nervous about the IP chemo, and would like to hear any tips/advice/stories anyone would like to share. How sick were you? What meds worked for nausea? Did you need to be hospitalized for the treatments? I would appreciate any advice. Every single woman on here is in my prayers - stay strong!!

[stephers1]

Hi there, I too am young with cancer diagnosed at 26. I have a rare form of ovarian cancer called stage 4 ovarian carcinosarcoma. I had a port put in for IP treatments however it was never used as lung mets were found so the decided to go IV. I am so sorry this is happening to you. Its sad when this happens to anyone, but we had our whole lives ahead of us and if you are like me my future as I planned it is destroyed. Now I have a port for IVs in my chest. Prior to getting chemo I put a cream on it called EMLA this freezes it and you can't even feel the needle go in at all. Make sure you use it 75 minutes prior to treatment. This is going to sound harsh. Don't be afraid of the treatment it is designed to help you and get rid of your cancer. I assure you, you can handle it. I have had 17 treatments of various chemos and you always get over it. Try to find a hobby. I make beaded bracelets and then donate the proceeds to Ovarian Cancer Canada. It is so fun.Again I am sorry you must endure this disease however it is up to you to make the most of it. You are in my prayers!!!!!!

[EchoUK]

Forgot to add that I only went down to CA284 but my oncologist said that he wouldn't use any more chemo until it had gone up quite a bit (over double) as long as I felt well, you aren't alone :--)

Hugs,

Ruth in the UK

[Helmar]

Hi Deandra... Just so you don't stress about numbers too much... mine was 7500 last December and we got it down to 290 by June. My Oncol. says numbers are just numbers, and not to worry about them, as they are only an indication..... so I don't worry. :-)  My numbers are always fairly high, but I feel well, eat well, and enjoy life.
Re the colostomy... yes,mine was part of the cancer. I had a gastroscopy and colonscopy and they both came back negative, but the cancer was actually working on the outside of the bowel, and of course by the time they discovered it, I was told I needed a colostomy or I die. Simply as that.. so no choice. It doesn't hinder me from doing what I want to do... I even go swimming, so I don't care about it. We do what we've got to do to stay alive, so I don't stress about this stuff.
Stay in touch with us, won't you... and let's know how you are doing.
Hugs to you...Helen...

[EchoUK]

When I was diagnosed my CA125 was also 6000.  My only symptom was a large quantity of ascites which turned out to be malignant.  I had six rounds of chemo - carbo alone as I re-acted to Taxol -before surgery and four more chemo afterwards.  I finished first round chemo in May and was pronounced stable but not in remission.

I had a CT scan, chest X-ray and physical exam but no disease could be seen so I have been off chemo since and have my next exam at the beginning of next month. Don't really know what to expect then but I feel pretty well at present!!

[Brownie3321]

I tried to post this question on the doctor forum, but it was too full. What do any of you know about the CA-125 test? When I had my hysterectomy my CA-125 was almost 6,000! Does that seem crazy to you all? After my surgery and one chemo cocktail of carbo/taxol, it went down to 195. I had my 2nd chemo treatment 2 weeks ago and my CA-125 was done a week later rising to 220. I asked my oncologist if I should be worried and he said no. He said the numbers can go up and down by a few but if it doubled he would be concerned. What are your experiences with the CA-125 test? I will post this question on the doctor forums as soon as it will let me, I just wanted to get all of your opinions as well. Take care, Deandra

[Brownie3321]

Hi Helen,
I wanted to let you know that I had a colostomy 1 month after my hysterectomy/bowel re-section. The reason they did this procedure was because I was having multiple infections after my surgery causing drains to be put in/out for that entire month. It was then figured out I had a tear in my bowel causing these infections which is why they put the colostomy in. Does this make a difference? I don't want to get it reversed if it will cause me more problems, but I also didn't get it from the cancer. The doc's wanted to make sure the tear in my bowel would recover and then I could have it reversed. Was your colostomy part of the cancer?

[dian07]

Hello there kid...this is a tough road to navigate but you soun like a strong and determined woman...you can do this .......unfortunately you have no choice.  Keep in touch with us and we will help in any way possible.  I think it is great you are here asking for all the info you can get from those of us who are lucky enough to be in the "1% club".....it is an elite group of women who will fight this demon at every corner.....every day we go on with our lives we defeat the deamon.....someday soon I hope there will be an easier way to fight or even no need to fight as we will have won once and for all.  Hang in there kid....stay proactive and keep us posted....we will all be watching for you.
Peace.
dian

[Helmar]

Hi Deandra...I don't want to frighten you in anyway, but I just want to mention the following so that you can be wary...that's all. I too have a colostomy, and wanted a reversal operation a.s.a.p.. I spoke with my Surgeon about this, and he told me that if I can go 12 months 'cancer-free' he would do the operation, however unfortunately for me, I only had about 9 months before I recurred. I spoke with my surgeon again, and he said that while he would do the reversal operation *if I insisted* he would not be responsible for the outcome, and told me to leave well enough alone. If your Surgeon/Oncol. is happy to go ahead with the operation, and you are cancer free, then that is great, but  give it plenty of thought, and talk with your Doctors about the future. I've lived with the colostomy for almost 4 years, and it doesn't bother me as I'd rather have it, than the alternative that they offered me back in Feb04, if I didn't go ahead with it. No choice really.
It's an awful position you find yourself in for a young person, and my heart goes out to you. I hope and pray that everything will work out well, and you will go into a long remission..... and a successful reversal operation. All the best... and lots of hugs ....Helen...

[Brownie3321]

Thank you for all your words of advice and prayers. I do not know the IP chemo cocktail I will be receiving. I will know more about this once my colostomy is reversed - which might be possible in the next 2 weeks. I do have Emend and Zofran, I am hoping they will do their job. :)  I think this message board is great and I will continue to post about my recovery. Deandra

[westgal]

Sorry I had a typo. I am 12 months out from first-line chemo recurrence-free. I was 3C.

[SimplyStar]

I do not have cancer , I am a caregiver for my daughter, my heart goes out to you and I can only wish you the very best of luck in  all that will follow now.  You came to an excellent place for support, these ladies will listen to you and support you all the way. Besides the nausea medicine they give you , you might try to drink some sage tea, that worked for my daughter. It is recommended for nausea during pregnancy so it is safe to drink.

[westgal]

A few things that helped me while I had IP chemo: Before tx, the infusion nurse put an ice pack on the IP port for 10 minutes or so which numbed my skin and I didn't feel the needle at all. This reduced the anxiety of IP treatments. I was given Prochlorperazine Maleate 10 mg for nausea and it worked well as I didn't have much nausea at all. The first three days after tx I was lying on the couch watching funny tv shows. I had all my chemo as an outpatient.

When I had IP chemo, carboplatin had not been approved for IP use, so I had IP cisplatin/taxol. You might inquire if carboplatin/taxol is an option for your IP tx as there are fewer side effects. IP cisplatin comes with the risk of kidney side effects, which I had, and I could only tolerate 2 rounds of it. I was switched to IV carbo/taxol. However, if you only have the option of the IP cisplatin/taxol, I highly recommend it because I am 13 months out from that first-line chemo and have not had a recurrence.You have been added to my prayer list and hope you keep us posted on your progress.

Best,
Westgal

[junamgen]

I'm 43 when I was dx last Nov. I have been able to finish 6 cycles of taxol/platin of IP and IV after surgery. Now I'm on taxol IV only consolidation chemo.  The platin IP will totally puts me in the bed for 1-2 days, nausea can be control using Zofran, Reglen or Emend (which was  not working for me at all). I've found that nausea medicine is most effective when I used first time, so I have to switch to the new one after 2 cycles. I usually will only take pain killer for 1-2 days right after chemo since it also can upset stomach.  I'm sure you can go through it since you are much younger than me. I think it really helped me through is get mentally ready to face whatever coming.

jun

[Tybear]

Just want you to know that reading your story was like reading what I've gone through. I was 26 when I was diagnosed 3c as well. No idea until I woke up from surgery. No family history either. It's a shame that doctor's are quick to dismiss people simply because of their age. I didn't have IP chemo, but I wish you the best of luck with that. I'd love to tell you it gets better, but here I am, 2 years out now, and just finished another 11 months of chemo. I'm meeting with a surgeon on the 18th, so hopefully something will come of that. Keep your head up and as hard as it might be, try to stay positive. There are going to be many down times, but you'll get through them, I promise.
Keep in touch,
Becky

[Helmar]

Hello... I'm so sorry to hear of your terrible experience, and hopefully you will soon be feeling much better. I've not had IP chemo, but a friend of mine has, and while she says it was harsh, the results have been very good and she is presently in remission.... Stage 3C   If your cancer has spread to your lymph nodes and bowel, to the extent you needed a colostomy, then I would think your staging would be 4, as this is similar to what happened with me. I was dx Stage 4 in Feb'04 but I'm doing good, and feeling fine. Admittedly, I have had lots of chemo over those 3 odd years, but I tolerate it well and I'm still here, and that's all that matters. I've not had nausea, as I just eat little and often. I find that stops the nausea, as it seems to come when the stomach is empty ( well for me, anyhow). I'm sure some of the other knowledgeable ladies here, who have had experience with the IP chemo will be able to offer lots of advice to you.
I just want to wish you all the best with the treatments, and I hope you will stay in touch with us, and let us know how you are doing. It's very supportive here, and the folks are great.
Best wishes and hugs....Helen...