I am about to go in to 6th and final round of chemo. I'd say yay, but then there's 2 years of maintenance chemo after that.
My doctor wants to conduct a series of scans after chemo to get a "new baseline," which sounds smart. CT scan of abdomen for sure. I suggested a bone scan because my right hip has been bothering me and he says, Yeah, good idea. I love the guy, but lots of time I feel he acts on things only because I thought of them or mentioned them. At least he doesn't fight me, but I would LOVE if he came up with this stuff on his own. Argh.
Can anyone tell me of other scans they think would be good to have to have a really clear idea of where I stand now? I am stage 3c, optimal debulking in Dec of 2019. One friend even had a brain scan (after long breast cancer) not sure if that's common for ovarian. I'd like every nook and cranny poked and prodded, are there some more that I should insist on? Thank you so much.
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FlowerRose
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As I have just been told I have a recurrence in my right lung... I would suggest neck and chest are included, just so you have a record of what’s normal for you xx
My oncologist always orders chest, abdomen and pelvis. I had lesions picked up in my lung 2 years ago but turned out to be an infection and was treated with steroids and antibiotics. I’m glad it was picked up on the scan.
Over the past 5 years my oncologist has always done chest and pelvis CT scans. I’m in the USA. After a recurrence I also had a PET scan, but that is not something you need unless things seem more seriously developing.
Depends on your age. I asked for a ct scan head through pubis just to see if anything looked off as i am 77. Also pet scan even in remission every 4 months
I have stage 3c clear cell ovarian cancer. I did 18 rounds of chemo in 14 weeks. Along with IV chemo I did IP chemo. I have labs now every 6 months. Did labs every 3 months for 5 yrs. I get a cat scan every year of chest, abdomen and pelvic. The last one was in February all clear. Oh, IP is intraperitenil chemotherapy. I also see an endocrinologist every 6mo. Since I have thyroid issues since chemo. I also have colonoscopy every 4 yrs. My cancer had attached to my colon. My Dr is also my gyno, onc, and surgeon. I've been cancer free since 2014. It's good to have a Dr who agrees to push for tests . not all do. I don't take any meds for maintenance. Never did. I take vitamins, cpq10, 100 billion probiotics, vit D, turmeric curcumin. Daily women vit. I also drink orgain organic protein plant based drink as meal replacement. I don't do petscan because been injured too much so I lite up like 4th of July. Only cat scans for me. Hope this helps. Best wishes, Liz
Thank you, Lizchips. It seems IP chemo might be more common in UK. There is a trend away from it in the US, I was told. I can't help but anecdotally notice women living longer if they've had IP chemo, but doc tells me stats say not the case and that it's so harsh on women, most can't finish the treatment. Also that at my hospital I'd have to be in a clinical trial to get it. Hmm. If I reoccur I might have to insist. I'm responding OK to first line treatment now, so don't need it yet, I guess. Take care. Glad you're so long out! What do you mean you were injured so much that you can't do a PET scan? Injured by the cancer or other non-related injuries. Hope you don't mind my asking.
When you work 35 yrs petrol you have a lot of injuries. So injured areas light up. Currently retired but have 9 discs messed up. Pet scan came back yrs ago. And said I needed bone biopsies, in spine and right shoulders all came back negative. Dr said we will just keep doing cat scans. So monitoring me that way.
I actually thought wasn't bad at all. I had hard time with cysplatin drug. So switched to carboplaten. Did great. 18 rounds in 14 weeks. Didn't skip a beat. If it returns. Get 2nd opinion or demand it. My Dr swears it works. She is an oncologist gynecology surgeon. I'm blessed to have she fights for her patient's.
Actually I've never heard any of these ladies on health unlocked mentioning having it. I'm in the 🇺🇸. My Dr swears by it. She's affiliated with city of hope. All my IP was done there. Not all hospitals in the US have it. I think it depends if Dr is affiliated with a hospital that offers it.
Yes, her name is Dr. Amy Hakim. She's out of Palm Springs. Desert regional medical centre. City of hope Duarte, she performs surgery sometimes. At city of hope I did 90 percent of my chemo. Dr Hakim scheduled through Dr mikaela christea . she's based at city of hope. Goid luck hope info helps.Liz
One of my friends set her up with my Dr. Was originally given 6 months. She wasn't candidate for IP chemo. But has been cancer free 2 yrs now. The other word was patrol.. Was state trooper California.
Flower Rose are you based in the UK? I was supposed to have a scan after my chemo to see how it had gone but my oncologist informed me that they are not doing any scans at the hospital due to Covid.I hope this changes soon !!
I'm in the US. Wow, that's disheartening to hear you won't get tests. I haven't been told that yet, but instill have a few weeks to go till scans start. My onc told me, With how agressive your cancer was at first we DEF don't want to miss chemo or scans! So that was scary, but reassuring at the same time.
I am in the U.S. and when I have a scan, there are three different scans approved by my insurance--chest, abdomen and pelvic region. I suppose this means they are all separate in terms of scans (at least here, and maybe for insurance billing purposes) but those are the areas they scan. I had a couple of lumps in my neck during my second recurrence and asked them to scan my neck but they said the chest scan gets the neck area. Wishing you luck and a clean scan all over! oxoxoxxo
Hi FlowerRose. When you say 2 years of maintenance chemo, do you actually mean chemo? or a maintenance drug? I ask as, for maintenance, I'm on Avastin. It's not like a chemo - doesn't make you ill. I've been on it for 5.5 years.
I was diagnosed 3c. Every 6 months, I have a CT & PET scan. The PET scan shows up more than the CT but you can only have those every 3 months max. Not sure what the dangers are, but there are some anyway. My scans are chest, abdo, pelvis, so that's the same as most people above. OC rarely reaches the brain, so brain scans are uncommon. Having said that, I know someone from our Support group where the bugger has reached her brain. But it is rare.
When I asked my onc about a bone scan (bone density test), he said we'd wait till the chemo was completed but it never happened, so I got it done anyway recently (8 years after initial diagnosis). It came back as "come back in 5 years". In other words - bones are strong - no probs.
You mention IP chemo. I had that too for first line. I live in Australia. A few other women here had it around that time. I never hear of it now, so had thought that maybe it was a bit of a fashion that they decided wasn't beneficial.
I have an annual Mammogram. My OC seems to start in the lymph nodes in my groin. For my 1st recurrence, it managed to travel from the groin up to the breast and was attempting to get under way there. The mammogram picked it up, so that mammogram's important to me.
I wouldn't worry too much about having to suggest to your onc what tests you want - sounds a bit like a marriage. At least you have a working relationship.
I'm 74 (in a couple of weeks). Everything they've done for me has worked well. I feel fit & well. Good luck & best wishes. Pauline.
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