First Cat Scan after Dubulking Surgery ?

[Lind58]

Hi Ladies, Hope everyone is doing well. Just curious to know when you had your first scan following debulking surgery? My mom is scheduled for Tuesday - She had her debulking surgery in November, and has had two chemos since then.

[kristinaapril]

Hello! My mom had optimal debunking with no residual disease in June 2017. She finished chemotherapy in September 2017 - when she had an end of treatment scan. However, She did have to ask specifically for the scan. In our area (USA - PA), it is not not routine for an addition CT scan if you had an optimal debulking.

Hope that helps,

Kris xx

[Lind58 in reply to kristinaapril]

Interesting! Thank you for the reply, how’s your mom doing now? My mom is at msk

[kristinaapril in reply to Lind58]

My mom is at Magee women’s (Pittsburgh,pa). She is currently on her first reoccurrence, but currently coping well. Wishing your mom the best on her scan.

[Lind58 in reply to kristinaapril]

I hope this treatment puts her in remission for a long time!

[Nstober]

Hi my sister had a scan in August almost 3 months after her optimal debulking. She now has scans every 3 months. May be part of insurance here in the states. How is your mom now?

Wishing you all the best. Nancy

[Lind58 in reply to Nstober]

Thank you for your reply. She had “better then” optimal surgery also, she had her second treatment of carbo/taxol last week and is struggling to put on weight/have hope. Her ca125 was 425 at diagnosis, and now down to 8. Her oncologist recommended because he said he typically does it after surgery and now is the time. Hoping it shows good results for her to pick her spirits up. This disease has just recked havoc on our life as I’m sure it has on yours!

How is your sister?

[Nstober in reply to Lind58]

Havoc anxiety yes all of that. My sister had three strong chemos, carbo/taxol/avastin, then hysterectomy, removal of omentum and perineum,then 5 more strong chemos. Now on 2nd maintenance chemo. Deemed no evidence of disease cancer free since surgery, now entering 8th month. She is going skiing in a few weeks. Your mom needs to eat protein and also as much plant based foods as possible. Look into the aspirin study results good for all of us, including her, to take a low dosage aspirin each day. Confirmed with our oncologist. This site is a life saver

[Lind58 in reply to Nstober]

If you don't mind me asking what is her maintenance? My mom is amendment about not doing avastain - we will see what happens. I am so happy to hear your sister is doing well! And hope it only continues.

[Nstober in reply to Lind58]

She has done two rounds of just avastin but protein levels have risen in her kidneys so she may go onto a parp inhibitor instead. Keep me posted on your mom. I hope you have an outlet to help you along. How old is your mom?

[Lind58 in reply to Nstober]

Is she BCRA postive? I have hope in getting my mom on a parp. They say at MSK there are many avenues to explore. She is 63, how about your sister? My mom was always healthy, fit, never had any health condition. Was all so shocking.

[Nstober in reply to Lind58]

Are you in ny? We are in nj using Rutgers cancer institute. My sister is 59 I year out from diagnosis. Just heard she can do another round of maintenance avastin. Hopefully she will have 9 more then on to a parp inhibitor. She was fit and active had bloating and lack of appetite. She is back being active again. She tested BRCA negative. Did your mom get tested yet? Look up the aspirin study.

[Lind58 in reply to Nstober]

Yes, we are at MSK - luckily she got in with a great surgical oncologist. My oncologist recommended him. I really hope my mom goes on avastin. It is ultimately her decision. She is also bcra negative.

Your sister is giving me hope. And you are a great caregiver and sister staying so on top of everything for her, being her advocate.

[Nstober in reply to Lind58]

You are too for your mom. We need to compare notes since my sister is also brca negative. I was told I do not need to be tested. Did your mom have chemo before surgery?

[Lind58 in reply to Nstober]

I don't know if it different, because that is your sister......... but apparently my sister and I do not have to worry, because my mom doesn't carry the gene.

They initially thought she was stage 2c - she saw the surgeon on Wednesday and the following Wednesday had the surgery. The surgery was roughly 6 hours long. She was given 4 weeks to recover. The doctor said she was better then optimally debulked. When the pathology came back she is between Stage 3c & 4. First chemo of taxol/carbon CA-125 was 24, second chemo CA-125 is 8. The medical oncologist wants her to get the scan now because they said its typical procedure. She is also very thin and not gaining weight. They want to rule out a blockage. Which I am confident it is not, because she is honestly not eating a lot. Prior to falling ill she was 112 lbs. and never ate much to begin with. Now she is down to 93. We push her with the insure (2 a day 350 calories each), the food but she is very depressed given the diagnosis and finds it hard to eat. We (3 siblings and my dad) are pushing her to take the anti-depressants. Right now she has not agreed. It's a lot to go through for anyone and on top of all this I am getting married in 5 weeks.

Did your sister use the cold cap? My mom did but still lost 60% of hair which made matters worse. We know it's just hair and will grow back, but for her she feels like this disease is just stealing everything from her. Her career (she put in for retirement - she has been an NP for 35 years), her beauty, her figure, her golden years. I keep telling her this is just temporary with medical and god's help she will bounce back. Woman are living a lot longer with medical advances. I have to keep telling myself this.

[Nstober in reply to Lind58]

Oh you poor thing your wedding coming up is a blessing. My sister came in as a 3c /4a as well. Why did they stage your mom with that number? A few things I have learned that give us all hope. After my sister had her 1st 3 rounds of the three chemo drugs, we were told she had great response best case scenerio. Her ca 125 was 2700 at diagnosis then down to 300 before surgery, 14 right after surgery now at 9. She had 5 1 / 2 hours of surgery then received Hipec the heated chemo. Doc came and told us she got rid of all the cancer, optimal debulking. Things look better when one is told optimal debulking. My sister has bern back to riding horses and exercising for months now. No cold cap she did lose her hair but that also represented the chemo doing its job. My sister is back out since nov..in her own hair..avastin does not cause hair loss. Also told numbers if you google are outdated. Women living longer and better with treatment options..it sure does suck though. I am sure it's been a whirlwind of learning so much stuff too. I was going to say ensure or boost..she needs to eat more protein.

[Lind58 in reply to Nstober]

They believe it touched her liver, but weren't certain because the cells on her diaphragm came back with liver cells with cancer cells - Something to that affect. But like I told my mom at this rate it doesn't even matter, what matters is getting her better. I hope this CT scan shows good results, I really pray. She needs some good news!!

So happy for your sister is back to her regular scheduled programming, long may it continue.

[Nstober in reply to Lind58]

Her ca 125 is a great marker..keep me posted I know we have to keep the faith xoxo. If you can dm me here I will give you my contact info.

[grammeejill]

My answer is much like Kris's. I only had 1 CT scan before my first chemo treatment. I finished treatment in Feb 2016 and no other scans, either. I am in the US and docs just don't scan unless warranted by symptoms.

[Perthgirl]

I am in Australia and had a CT scan prior to operation Oct 2017, then a PET/CT scan 6 months after completing treatment and nothing since then.

[27-359]

I think that sounds about right. I know that I had started chemo before I had my scan.

Jenny

[Lyndy]

Hi Lind58

I think it was about 3 months after the end of chemo- maybe a bit less. They use this scan as a baseline to look for later changes or ( hopefully) to show ongoing remission! Best of luck to you and your Mum x

[Di16]

After my last surgery, when they removed all the cancer they could see, I wasn't scanned for 8 months. the time before, with a different dr, it was 3 months. Di

[Neona]

My first scan was 9 months after my very successful debulking operation and frontline chemo. By this time the cancer had grown back substantially and the chemo had caused serious kidney damage. I consider this was negligence by my oncologist considering that my diagnosis is clear cell. I am really glad that your mother is being given an early scan.

[Hidden]

Hi Lind58. It seems to be different from hospital to hospital. I'm in the same city as Perthgirl but at a different hospital. I have a CT scan every 3 months. Best wishes. Pauline.

[Artgreen]

In the U.K. here and with my low grade serous carcinoma stage 3a I’m not getting my post op scan until the end of chemo which will be 7 months after the op. I’ve had ca125 results of 11 down from 80 pre-op. Looks like it depends on type of cancer and stage and the area you live in! Hope all goes well and your mum starts to come to terms with the shock. It certainly is one. Hope is the key and getting the anger and resentment out. Seeing a therapist could be very helpful for her.

Very best wishes

Alex x

[Lind58 in reply to Artgreen]

Thank you so much for your thoughtful reply.