Biopsy 3 weeks ago and still don't have a chemo plan

Barneygirl

I had a biopsy 3 weeks ago that confirmed recurrent disease and as of today, still no chemo plan. My doctor won't be having a tumor board meeting until next wednesday and probably treatment won't begin until the following week, at a minimum. So that will be 5 weeks after the discovery of the recurrence. Seems like a long time to wait considering I won't be a candidate for surgery and I can just imagine the cancer is growing all the while. So frustrating!!!! I am being too impatient?

Tethys41

Do you have any symptoms? My gyn/onc would say that as long as you are not symptomatic, there is no need to start treatment. He is basing his position on a European study where one group of women started chemo when their CA-125 went above normal: another group started once they were symptomatic. There was no difference in the results between the two groups. But I know it is still hard to wait.

Barneygirl

Tethys41 said:

Do you have any symptoms? My gyn/onc would say that as long as you are not symptomatic, there is no need to start treatment. He is basing his position on a European study where one group of women started chemo when their CA-125 went above normal: another group started once they were symptomatic. There was no difference in the results between the two groups. But I know it is still hard to wait.

I don't have symptoms, but I
I don't have symptoms, but I have been in remission for 5 years and I always thought that chemo worked best on small or microscopic disease. At least it always has for me. When I first recurred, I had another major debulking followed by chemo and that gave me such a long remission. I guess I want that to happen again and the longer we wait, the harder it will be.

Tethys41

Barneygirl said:

I don't have symptoms, but I
I don't have symptoms, but I have been in remission for 5 years and I always thought that chemo worked best on small or microscopic disease. At least it always has for me. When I first recurred, I had another major debulking followed by chemo and that gave me such a long remission. I guess I want that to happen again and the longer we wait, the harder it will be.

Link to overview and study
http://pubweb.fccc.edu/strongtogether/?p=1198

antcat

Your recurrance
Hi, I had a recurrence 3 years ago. I did have surgery, but I had to wait 3 months before I could even start chemo due to a wound opening which resulted from my surgery. Then last year I had another recurrance after chemotherapy, and at that time the tumors were very small. I found this out after a PET scan following chemo and I didn't have any chemo until 3 months later. The tumors did grow a little, but there was nothing I could do. I was going for a 2nd opinion and then had to have a port put in. You're not being inpatient. I've been undergoing chemo for over a year and still the tumors are growing a little even with chemo. It is very frustrating, because I'm getting all this poison put in my system and it's not even killing the tumors. I've decided that after a year of chemo, after my CT scan results next month, I am going to take a long, awaited chemo break, just to give my body some time to heal. I look at it this way, I've been getting chemo and they are still growing, so my gyn/onc said a break would be good, so I don't become resistance to chemo drugs. My med oncologist on the other hand thinks a little differently. But, I'm going to go by what I want and need. So, no, I don't think you're being inpatient. Please try to hang in there.

Barneygirl

Tethys41 said:

Link to overview and study
http://pubweb.fccc.edu/strongtogether/?p=1198

Thanks
Thanks for posting this. It is interesting, but seems to mostly apply to patients that had platinum-resistant disease, and not the platinum sensitive group (those that recurred 12 months or later). Unfortunately, CA-125 is no longer an indicator for me, so we have to treat based on imaging from now on.

Barneygirl

antcat said:

Your recurrance
Hi, I had a recurrence 3 years ago. I did have surgery, but I had to wait 3 months before I could even start chemo due to a wound opening which resulted from my surgery. Then last year I had another recurrance after chemotherapy, and at that time the tumors were very small. I found this out after a PET scan following chemo and I didn't have any chemo until 3 months later. The tumors did grow a little, but there was nothing I could do. I was going for a 2nd opinion and then had to have a port put in. You're not being inpatient. I've been undergoing chemo for over a year and still the tumors are growing a little even with chemo. It is very frustrating, because I'm getting all this poison put in my system and it's not even killing the tumors. I've decided that after a year of chemo, after my CT scan results next month, I am going to take a long, awaited chemo break, just to give my body some time to heal. I look at it this way, I've been getting chemo and they are still growing, so my gyn/onc said a break would be good, so I don't become resistance to chemo drugs. My med oncologist on the other hand thinks a little differently. But, I'm going to go by what I want and need. So, no, I don't think you're being inpatient. Please try to hang in there.

You've been through so much,
You've been through so much, I can understand your wanting and needing a break. This is such a psychological disease as well, and I seem to feel better when I am fighting. I'll try to hang in there. Enjoy your chemo break!

carolenk

Barneygirl said:

You've been through so much,
You've been through so much, I can understand your wanting and needing a break. This is such a psychological disease as well, and I seem to feel better when I am fighting. I'll try to hang in there. Enjoy your chemo break!

Why no surgery?
Just wondering why you are not a candidate for another surgery but had a tumor large enough to biopsy? Was that tumor removed completely before it was sent to the pathologist?

I've always wondered why some people get a second or third surgery and others don't.

upsofloating

Barneygirl said:

You've been through so much,
You've been through so much, I can understand your wanting and needing a break. This is such a psychological disease as well, and I seem to feel better when I am fighting. I'll try to hang in there. Enjoy your chemo break!

Hi Laura, I used to want to
Hi Laura, I used to want to jump into chemo asap after a recurrence was identified or suspected but I'm not so eager to go there anymore. I get to NED, take a break and then it's back again. Sigh! "Shampoo, rinse, repeat."! I now wonder if I had waited, one 'shampoo' might have brought me to the same place, with less collateral damage.

Another poster on the uterine board with UPSC as I have (highly aggressive Type 2 Uterine CA, disease and treatment same as OV CA) had simultaneous chemo and radiation for her supraclavicular node recurrence and has been NED since completing this regimen late last year. My Gyn Onc did not want to combine treatments. I think he believes my bone marrow is not really strong enough for continued chemo. I may seek other opinions on options here. However, I was wondering if this had been an option considered for you?
Just want to pick up and hug your puppy!
Hugs to you,
Annie

Barneygirl

upsofloating said:

Hi Laura, I used to want to
Hi Laura, I used to want to jump into chemo asap after a recurrence was identified or suspected but I'm not so eager to go there anymore. I get to NED, take a break and then it's back again. Sigh! "Shampoo, rinse, repeat."! I now wonder if I had waited, one 'shampoo' might have brought me to the same place, with less collateral damage.

Another poster on the uterine board with UPSC as I have (highly aggressive Type 2 Uterine CA, disease and treatment same as OV CA) had simultaneous chemo and radiation for her supraclavicular node recurrence and has been NED since completing this regimen late last year. My Gyn Onc did not want to combine treatments. I think he believes my bone marrow is not really strong enough for continued chemo. I may seek other opinions on options here. However, I was wondering if this had been an option considered for you?
Just want to pick up and hug your puppy!
Hugs to you,
Annie

Thanks Annie
I had the rads, but that is all that has been discussed thus far. I know chemo will be forthcoming, but it would be nice to know when and what type. I'll just have to be patient.

I hope you get another opinion. Do you receive your treatment at a good cancer research center? I know there has got to be other options out there for you.

Hugs,
Laura

Barneygirl

carolenk said:

Why no surgery?
Just wondering why you are not a candidate for another surgery but had a tumor large enough to biopsy? Was that tumor removed completely before it was sent to the pathologist?

I've always wondered why some people get a second or third surgery and others don't.

surgery
I am not a candidate this time due to location (mediastinum, axillary, & clavicle lymph nodes) and number of mets. Surgery is only done if the doc feels they can "get it all" or if it is in one spot. The biopsy was a FNA(needle) of the lymph node in my clavicle, so not invasive at all.