Interval debulking

[Chuck608]

Hi
I have 2 very large masses on each ovary, one was 17 x 16 x 11cm 3 weeks ago and as my belly is bigger now I am sure it's grown.  I saw a gyno/oncologist 2 weeks ago and he said he would operate but wouldn't know until he opens me up if the growths are benign or malignant.  My operation is scheduled for next week and when I got the pre admission form it says that the operation to be performed is Interval Debulking!  From what I've read this is used for stages 2 to 4 Ovarian Cancer only.  So it appears that he's already made up his mind which way the op will go and I feel cheated and lied to now.  For me all hope of it being benign has gone and I know that I'm definitely going to need chemo and may only have as little as 2 years left.  I won't see him again until the day prior to the op so don't have a chance to ask him anything.

[Chuck608]

I don't think we use the dogs that much here in Australia.  Which is a pity.  They are used more outside the hospital environment in rehab and long term health facilities.  

Have just googled that AMG 386  and it seems they are having good results with it and there's 2 more Phase III trials scheduled (going by an article posted in June).

It seems all the various Dr's have differing opinions about what is and what isn't cancer.  My gynoncologist who did the op said that if my CA125 starts to move up again at any time then they look into it.  I wish I knew what it was pre tumour growth as one Dr told me zero is the normal level, but then I thought that anything less than 25 was also considered normal - except in us post op ladies anyway.

I looked at being a vet when I was in my teens and I remember being told that they have to be more highly trained than Dr's.  Dr's deal with patients who can say where their pain is and how bad it is etc, whereas the vet can't talk to his/her patient.

Chuck

[HVAC]

I have two Service dogs and yes they are real. Polly is a Dalmatain,and Grady who is in training is a Foxhound. I am still waiting on the study. It is AMG 386 it sounds promising if I don't get the placebo. Everyone gets Doxil.

No my Doctor did not look at my two previous CTs. They are still saying I was in Remission even though the CT Scan and MRIs showed something on the liver and enlarged lymph glands. They were not Cancer and now they are.

I took Polly to the vet today and I swear I want to be treated by a Veterinarian. Veterinary medicine is so much better than human medicine. It is faster and more humane.

I have to wait for the slowness of human medicine.

Alex

[Chuck608]

I'm so sorry Alex I didn't realise that you weren't in remission.  You sound as though you have been mucked around by everyone!!  Didn't your oncologist compare that scan against earlier ones you'd had?  I get so frustrated with some of these doctors, I think they forget they are dealing with fellow human beings who have feelings and families!  I had a CT back in May and my oncologist was concerned that there was a spot on my lung.  When I told him that I'd had a scan pre op he went searching in their system and found it.  Then he saw the same spot on the lung in that earlier scan.  So he said it hadn't changed so was most likely nothing cancerous.  But at least he listened to me and found an answer, unlike your guy.

I hope your clinical trial has finally started by the time you read this, I 've read some encouraging articles about various trials.  There was one that mentioned the use of cisplatin on recurrences and they were having good results with it.  

I presume your service dog is a real dog?  I have a stuffed dog that I take to chemo with me each week and she gets many pats and laughs!!  Even the volunteers ask me if she needs a bowl of water!!

Keep in touch Alex and good luck with the Doxil.

Chuck

[HVAC]

My cancer never went away. They did a CT-Scan last October right after I finished Taxotere and Carboplatin and it showed something in my liver and lymph nodes. I asked the Oncologist if it was Cancer he said no it was not cancer it was something I was born with. That made no sense I had previous CT-Scans and my liver was clean on them. I had a breast MRI and all my lymph nodes were enlarged and the breast doctor said it was Ovarian Cancer.. My CA125 started going up at first they blamed the MS. Then they did another CT-Scan in June. They looked at that CT-Scan and saw that it was in my liver, lymph nodes, and peritenatal cavity. I have a kind of Ovarian Cancer called Clear Cell it is rarer and more aggressive. It is platinum resistant.

Duke moves very slowly I am in Clinical Trial and they keep messing up the tests so who knows when they will finally get me on the the Doxil. I go weekly and they have no Doctors orders and when they finally get doctors orders they forget things like Ekgs or chest CTs. I spend about six hours a week just waiting. I end up having two CTs in less than a week. I just had a full CT series in June.

At least everyone over their likes my service dog Polly. The nurses all stop and talk to me.

Alex

[Chuck608]

Hi Alex
Why are you starting back on Doxil?  Have you had a recurrence?

Chuck

[HVAC]

Glad it was not as bad as you thought and that you are coping well with Chemo. I did not have a happy time with my first six chemos but I forgot all about it when it was over. I had 8 months off now I am starting back this time on Doxil.

I have been riding horses and spent a week at the beach. Life is good.

Alex

[Chuck608]

I posted my original question in late Feb before my op and have only just now found I had 3 responses!!  I tried to post an update on that original post but there's no where for a reply and have only just realised that show how I had logged out!!  Chemo moment !  
So here's my update and thanks to the ladies who replied back then.  I had my op on March 5 and prior to surgery the Dr's told me that they were expecting that the cancer had spread to my diaphragm and bowel and that I would be in theatre for 6-8 hours and then go to ICU.  Op results were better than expected, less than 4 hours on the table, no ICU and the cancer was confined to the pelvic region and is a 3A.  I've now got 4 weeks of chemo to go and have coped extremely well, only hair loss and tiredness and I have been able to work the whole way through!!  (from home though)  But now my blood levels are not the best so have had chemo postponed the last 2 weeks.  So have read up on natural ways to increase platelets and went shopping on the way home from the hospital today!!
My CA125 was 3900 pre op, then 450 post op and 2 weeks ago it was 7.9!!!!   So yes we are all pleased with that result.  
I was also in hospital with a lovely lady who had the same op as I did on the same day.  We are still in contact with each other and give each up support by text message and email every week for our chemo.
Good luck to all the other ladies out there
Chuck

[Chuck608]

A related discussion, Interval Debulking was started.

[abrite1]

The doctor must write all possible procedures on the surgical consent form.  Otherwise, if they do find cancer, they would not have your permission to debulk.

I understand how scary this can be, but I want to encourage you. I was diagnosed with ovarian cancer stage 3C Sept. 2005. The cancer was in ovary, fallopian tube, colon, bladder, omentum and lymph nodes. I thought for sure I would not live long, yet here I am today 7 1/2 years later. Still doing chemo but very much enjoying life.

Please let us know what happens!

[nyc lady]

Sometimes the doctors write the worst possible on forms etc so that they don't have to fight on the back end if the surgery is more than just a simple look and see.   ALSO, in this day and age and with the laws being what they are, if the doctor truly suspected cancer, he would say it.  Technically, ovarian cancer cannot be diagnosed without a biopsy, so he doesn't know.  

And Alex is correct, 2 years....nah, old stat, I personally knew a 9 year stage 4 survivor who had a great quality of life until the very end, I know someone else, stage 4 going on 7 years, I also have a friend, stage 3B 27 years!! Stats are just numbers, we are people!!!  Remember that!!!!

AND....call your doctor if you have questions!!!!  I can remember my GYN/Oncologist once saying to me after I said that I had a question and I didn't want to bother him....he said "I am your doctor, you call me with any questions"!!!!

Good luck and keep in touch!!!
Pam

[HVAC]

The latest literature on Ovarian Cancer says debulking gives the patient the best chance over all. I think a good surgeon is aggressive from the beginning. Mine was. The two years life expectancy is an old statistic. Plus people are not statistics. I should have not made it through chemo but I am now in remission. I have met so many women who were stage 3-4 who are 10-15 years out of the diagnosis.

You can always get a second opinion. I wish I had not because of the Cancer but because my first Doctor and I did not get a long and I ended up switching after my third chemo.

I know you are scared. I was but it is survivable. It is not fun, I will not lie. I have forgotten about the surgery and chemo. It is like it was someone else.

I am 10 months out from diagnosis and I have my life back. I ride horses, dance, do yoga, and paint beautiful paintings. My hair is back. Life is good.

Alex