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Remission or NED while still some "seeds"?

SOPHIE333
Posts: 92
Joined: May 2011

Hi all,

Went with mum on her every second month check-up with good results on CA125 and cancer cells/noodles staying stable on the hormpne treatment (after 8 rounds of carbo/taxol). We discussed why not surgery and the specialist explained that surgery is not to be considered as the cells are to be found in her lungs i.e spread outside abdomen. To reduce the amount of cells in the abdomen will not help prolonging life as the cells in the lungs are still there as he said. I want to double check this with you all. What are your experiences?

He also explained that mum is not to be considered to be in remission or NED as there are still cancer cells in her body, but on a "steady phase". Is there a difference?

All in all she is feeling great under the circumstances, even driving her car again and next weekend we are going to Florens Italy for some holiday.

Love to you all,
Sophie

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Sophie: It is the same here in Ontario, Canada. I met with a surgeon today to see if a small tumour on my liver could be removed. I have gallbladder cancer but theh gallbladder, its cancer, and a bit of the liver were removed April 2010. However, the cancer had already spread to the peritoneum (6 nodules) and liver (1 mass). He said that it is not usual to do surgery on one bath of mets when you already have mets somewhere else. That there is no evidence that these surgeries would prolong life. But he may consider me for surgery if the surgeon who does peritoneum stripping would consider it too.
I have had two sets of 12 treatment chemos and if no surgery guess will go back on chemo if I can.
Cheryl

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Right from my diagnosis I was never offered surgery. I have never really understood why but I now think I know. I am stage 4 with mets to the area around my lungs. The seeding in my abdomen is very wide spreading and I was told that surgery would be "futile" as it would make no difference to my prognosis and may even cause me more harm - complications from the surgery.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Tina: That's what I was told too. How are you doing?
Cheryl

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Cancer can exist is various ways: progressing, regressing, "indolent" (this is where it is just sitting there not growing or shrinking), or "no evidence of disease" (cancer not visible on imaging but may be still present in microscopic form) AND gone (or cured/healed).

When cancer is in a "steady state," it is possible for a person's immune system to kick in and keep cancer indolent for an indefinite period of time. It is more common for cancer to move into progressing again once chemo effects have worn off.

I was making a big effort using anti-inflammatory diet & integrative medicine while my cancer was indolent & that lasted for about 3 months. One oncologist said that another surgery would just stimulate the cancer into an accelerated growth phase.

Peritoneal cancer is so rare--that's one of the reasons we just get chemo & other therapies thrown at us to see what sticks. Maybe I'm too cynical. Oh well.

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I always find your posts interesting and informative. The different states of cancer that you have written about makes such a lot of sense. I am the sort of person, just like yourself, that NEEDS information like this to make me feel safe and secure. It is no good for me to be told yes your numbers have gone up or no we can not do surgery without any further information that helps me to understand WHY.

I also agree with the fact that our disease is rare and the doctors don't really know what treatment plan works. I really don't think my oncologist knows what to do with me. When I went to see him after I had finished Topotecan my numbers had gone up significantly. He gave me 4 choices:

1 IV Chemo (which he reminded me I had just finished this for Topo)
2 Tablet form chemo
3 Tamoxifen
4 DO NOTHING

I was heartbroken because he was suggesting that doing nothing was an option, just like there was no hope. I asked him loads of questions about my cancer, why can't I have surgery, what about avastin, gemzar, why have the numbers gone up? and he COULD NOT GIVE ME ANY SUBSTANTIAL ANSWERS. He just said we don't know.

So please continue to post with your information as it helps me no end.

Tina xxxxxx

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

I was interested to hear about the nothing option. I think doctors don't really like to consider that but they give a choice as it's your body and the person who has to go through the various treatments. I don't think it's because the doctor is losing hope. Just my opinion but I'd hedge a bet that it's to do with giving you choice and some control over what is happening to you. :)

Best Friend
Posts: 222
Joined: May 2011

I believe that this cancer never goes into "remission". It is a constant thing checking on it, and then ok maybe the number went up a little, we will wait a little longer.....etc. I just think this is them telling you they will keep her where she feels healthier and able to enjoy her life a bit. My mom's numbers went up a tad but we are still waitin till June and than we go away to disney and than when she goes to docs when we get back we might have to get her through treatments again.
I don't understand why they don't try and remove as much cancer as they can through surgery. But i guess there are certain circumstances that they say no.

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