Rollercoaster

Hi all

I've been keeping an eye on this site for the last few weeks and finally I'm here being part of the action. My background - 53 yrs, have two children 26 and 23, I live with my partner of 7 years, I'm slim, fit and healthy - though have had intermittent stomach/bowel concerns since about 1998. Also low iron levels since Sept last year. In Feb this yr went to GP with abdominal pain - diagnosed possible peptic ulcer and prescribed some tablets and suggested blood tests. These tests resulted in low iron levels again. Returned to another GP at same surgery (woman this time - I'm new to the area that I live in). Suggested gastroscopy (19 March) - this was normal; then had colonoscopy 15 April. Approx two weeks prior to colonoscopy I noticed my tummy increasing in size. The night before colonoscopy I had severe pains like labour pains. Went for colonoscopy - told surgeon to be careful of stomach as it was painful. He tapped it and said "it sounds like it's full of wind". Colonoscopy result given to me immediately after - normal. Returned to GP next day (another women as previous one on holiday). Examined me, said uterus was size of 16 wk pregnancy & booked me in for pelvic scan next day. After scan I was told there was a large mass approx 15cm long coming from an ovary - could see left ovary but right ovary obscured. 22 April had apt with GP re scan. She booked me into Gyno Surgeon two days later. It was at this apt that Cancer was discussed. He made an apt for me to have tumour removed, total hysterectomy, BSO, & Omentectomy. This I had done the following Tues - 29 April. May 5th I left hospital. 7th May I was told I had Stage 3B Endometrial Carcinoma of right ovary, that it had spread to the omentum, attached to the pelvic wall & small bowel - but he thought they had got it all out. The tumour had "leaked". Said I would need MRI scan to check pancreas. 18 May (last Sunday!) I went to oncologist (I am told the best in NZ and AUS). He said the type of cancer I have is uncommon - he only sees 1-2 woman a year with it - he called it a mucinous carcinoma ovarian cancer. 90% sure it started in ovary, but there is 10% uncertainty - hence the scan which I am having today. Also, still concerned about low iron as unusual for ovarian cancer to cause this. It's now chemo decision time - carbo only or combination carbo/Taxol. Next Tues have another apt with oncologist when he has results from further blood tests & scan.
On a bright note, I feel like I have almost totally recovered from my hyst which was 3 1/2 wks ago.
P.S. There is no history of gyno cancers in my family.
It is just incredible how life can change so dramatically. It seems "unreal" that I have so much ahead of me, when I feel so well. I would love to hear from anyone out there, especially if your diagnosis is of the uncommon variety like mine.
Keep up the good work everyone.

Hi Lizzy

Welcome to the world of ovarian cancer. Boy, your story is textbook for being misdiagnosed for so long. Unfortunately many of us here share your diagnosis of ovarian cancer, if not your type. I am beginning to think that women with GI problems should automatically have a ca 125 drawn. Not perfect, but another indicator.
I too had low iron, before, during and right after treatment for ovarian cancer.
I hope they decide to use the combo taxol and carboplatin on you.
In the USA that is pretty much standard, except for germ cell.
I was 49 when diagnosed two years ago. Now I am twenty months out of chemo and still in remission.
I'm sure more of the ovca ladies will be along.
Please keep in touch.
Best wishes.

karenann

Hi, Lizzy!

A friend and I spent 10 days driving from the North Island to the South Island last July, and I must say that New Zealand is one of my absolute favorite places on this earth. The people were just lovely, and the monetary conversion rate made eating our way across the country very affordable. ;-)

That said, I am so sorry to hear about your recent situation, but I am happy that they figured out what it was and got it out of you. My own diagnosis -- Stage 3C -- was just a few months ago, and I'm currently undergoing Taxol and Carboplatin. As Karenann said, that's the standard here in the U.S. I'm not clear on why they would give the one without the other.

I think things like this are unreal for anyone faced with this type of diagnosis. It's like you walk into the doctor complaining about an itch on your arm, and you walk out being told that you have cancer and have to have major surgery. It's been overwhelming, but if I stop to let it overwhelm me too much, I won't be focused on the battle I now need to fight.

I'm glad you've decided to start posting. You will find tons of wonderful information here, as well as encouraging and supportive people who are in similar circumstances. I wish I personally knew more about your specific situation, but I don't. All I can say is that this journey is doable. As I sit here bald and achey, I can still say that this journey is doable. I cannot wait to be on the other side of it!

If it's any consolation, there's no cancer in my family on either side. No cancer of any kind. Why I got it at 37 may remain a mystery. But I am taking a long, hard look at the life I led before and will work hard to change what I can to ensure a healthier rest of life.

Many s and prayers for you!

Hi Lizzy...

Your story and mine could be twins!!!
The only difference is that we are almost exactly a year apart. MY surgery was on April 18, 2002.

My oncologist does the taxol and carboplatim combo. I was told that that it the standard treatment and I had 6 treatments.

Good luck to you.

Rosalie

Hi Lizzie,
My tumor was discovered last May between rectum and vagina. They still don't know where it originated just that it was squamos cell carcinoma. I too had anemia, a normal colonoscopy a monthy before the tumor was discovered an a normal Pap a few months earlier. There was no history of cancer in my family and it was a shock. I went thru high dose chemo Taxol/ cisplatin and ifex. I think cisplatin is similar to carboplatin. Like Siren Song said and many women on this site who have been thru the battle, it is doable and we find a strength we never knew we had.

Thanks to those who replied to my first posting - and apologies for taking so long to acknowledge it. I haven't managed to put aside the time to get into the HS site until early this morning. I haven't started chemo yet, so I've been trying get all my "stuff" at home up-to-date before I do. I still don't know when that will be. Due to changing from the private sector to the public, I have had to change Oncologists as the one I had has just resigned from the public sector. My appointment with the new one (a woman) is on 10 June, so I figure it won't be long after that I start the chemo treatments, (also considering that this week it was 5 weeks ago that I had surgery). I'm starting to feel a bit scared about it !! A normal emotion, I'm sure. If you've had Carboplatin/Taxol I like to hear about your experience. I do know that I am to have six treatments, one a month, and am aware of the possible side effects.

I've been going to yoga and out dancing - making the most of it while I can.


Best wishes to all
Lizzy