Stage 3 but low grade

[sunny1]

I have been told this by my onc. I have a large tumour in the pelvic area (Ive blogged before but cant find posts) and spread to omentum. She thinks that the taxol carbo 'might not be' doing much because she thinks its been a slow growing cancer. I have a ct this thurs and the results on the 2nd feb, this is when Ill be told if Im having surgery next or more chemo. If the chemo isnt shrinking it does anyone know what the next drug they will try could be?

I am a bit worried that it isnt doing anything apart from making my hair fall out

[ScardyCat40]

I have stage IV low grade OC. I had surgery in June last year and they tremoved everything they also found some high grade cancer as well. I had 5 cycles of carboplatin. The chemo dried up my ascities but it didn't get rid of the cancer left after surgery. I'm afraid there isn't another drug they may well treat you with surgery and then just monitor you. The good news is that survival rates are higher because its slow growing

[Heffmeister]

Hi there, so to hear this about your chemo. I'm in a similair situation with grade 3. After surgery last August the lab work said it was moderate but now I am also being told "They don't think the chemo is doing much as it's behaving like borderline/low grade disease" (my original tumor from 2010 was borderline).

My mid treatment scan has same as the before treatment one. I'm due my final dose of chemo tomorrow and then scan on the 10th Feb. I have mucinous tumors and am on capecitabine and oxaliplatin. I have already been referred to a new surgical term as they think I am better treated by more surgery. I'm finding it really depressing that I've done months of chemo for potential no benefit at all! I do still have my hair however as my regime does not make it fall out.

[ScardyCat40]

Heffmeister I know exactly what you mean about having the chemo for no benefit so I decided not to have my 6th cycle of carboplatin.

[sunny1]

ScardyCat40, my onc did say there is other chemo that I coujld be offered but they are going to wait until the results of the ct before making any decisions. She only said it 'might' not be doing a lot to the cancer, but on my initial meeting with her she said that the type I have tends to respond well to taxol carbo. In a way shes contradicting herself. Everyone I have spoken to on the ward when I have chemo says that shes a very negative person and tells everyone 'it might work it might not work' so I do tend to go in and see her with an 'expect the worst' mentality.

Hard to know what to think at the mo but its going to be nervy going into that appointment on the 2nd Feb x

[ScardyCat40]

Sunny,

I had my first follow up CT scan last week and I'm seeing my consultant on Thursday. Trouble is chemo tends to target fast growing cells its a personal preference but I don't want to go through chemo again unless I understand the benefits

[sunny1]

Ah ok I see what you mean now. I guess I have to pin a lot of my hopes on the surgery and them getting out as much of it as they can, I know that will make me feel a lot better emotionally knowing that the 'mass' has been taken out along with the other areas in the omentum too. It makes me wonder why they didnt do my surgery first, if they suspected it might be slow growing and chemo not beneficial then why not surgery then chemo? I know that after my surgery I will have 3 more cycles they have already told me that.

[ScardyCat40]

It can be a bit of a postcode lottery. I was living in Hampshire where they didn't require a biopsy and then I moved back to Manchester where they insisted on a biopsy and it took a few painful procedures to get a definitive diagnosis

[sunny1]

Im in Hampshire where I had the biopsy.

[ScardyCat40]

Were you at Winchester? I did ask them why they weren't doing a biopsy and I was told it wasn't necessary. They diagnosed me with PPC which is a more serious cancer and would have treated me with chemotherapy only which would have only stabilised the cancer and not removed it.

I had a full hysterectomy and they removed all the visible signs of cancer but there was still some residual cancer in the lining of the abdomen and I also have a small pleural effusion (fluid on the chest) on my right side.

[sunny1]

Im being treated at North Hampshire Hospital (Basingstoke). Im due to have full hysterectomy and omentum removal too as there is spread there as well. Surgery in Southampton though. My biopsy revealed low grade yet I have quite a bit of spread, thats why the onc seems to think its been slow growing.

[roshropshire]

Hello Kate

I had a similar experience . After 3 chemos they decided to operate as things had shrunk. I had a large ovarian tumor in 2017 which was removed but they couldn't do anything else.

I was told that surgery can only be done once. My hope is in all these new drugs that are now being tested. I'm on 2nd lot of chemo and was told I would lose my hair again! I haven't , I use Biofresh tea tree oil shampoo and nothing else ( no chemicals) whether this is the reason I can't say but worth trying.

Wishing everyone a good outcome