I did a reply to my original post a while back but thought I’d give another update I have decided for the one agent only Carboplatin had my first dose yesterday and touch wood feeling ok so far.
Thanks for all your replies. The only reason I settled for the one is after several lengthy discussions with two oncologists my gynaecologist and reviewing the results from the biopsy my condition is a rare ovarian cancer that is still early stages and showed signs of originating in possibly the gastric area but also markers that are not typical of ovarian. However due to not finding the cancer anywhere else and after several discussions with specialists they are treating it as a stage 1c1 ovarian cancer.
My oncologist explained she wasn’t even considering chemo for me initially but it is in my best interest to have it to be 100 per cent sure the cells are gone, as you all know from my previous post all scans so far have been fine CT/Colonoscopy/Endoscopy to check for gastric cancer which is where they thought the primary was but it was clear. I also had a breast screening recently before the chemo to ensure it isn’t breast cancer given the history in my family this was clear and I’m awaiting genetic testing results. The doc is organising a PET scan which she couldn’t do initially due to me undergoing IVF. I managed to preserve one egg 🤞🏽I had fertility sparing surgery due to my age being 32 and scans have showed right ovary uterus cervix all healthy. Docs did inform me that PET scans can sometimes bring up false positives and whilst the other scans showed everything healthy it’s something to be mindful of. They will monitor me closely after chemo. I was also informed if I change my mind during the 6 cycles I can add taxel. However docs have openly said to me they are not sure if I even need chemo given all clear technically no cancer cells showing but for best line of care it is recommended as preventive measure. They explored both drugs the pros and cons and gave me the option to choose.
My decision wasn’t just the hair I think it was just the amount I’m putting into my body given I have an auto immune disease too I am also not opposed to a full hysterectomy now I’ve had the fertility preservation. However if everything seems healthy and I’m closely monitored my gynaecologist has said there’s no need to take anything yet but it’s something I can decide later.
So that’s my update one cycle down 5 to go, any one on carboplatin get many side effects so far noticing some constipation but will see how I go otherwise ok.
Oh and as for second opinion privately I am still going with this with the royal marsdon unfortunately all of my medical docs took too long and I couldn’t delay chemo any longer due to already delaying it for IVF my surgery to remove my cancerous cyst was on 6th September so it’s been a while and only start chemo yesterday but oncologist was fine for me to delay still a long road to go to make sure it doesn’t come back 😬
Hope you’re all well x
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Kscott10
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Hello - I hope you are doing ok still after your surgery. Its certainly a big op. I am so sorry about your diagnosis. From your post it sounds like you have really explored all of your options and had some great advice from the professionals supporting you. Did you find out what type of cancer it is? Anyway, I was diagnosed with mucinous - which is a rare type of OC. I decided to take carboplatin (what I was offered) 6 rounds 3 weeks apart. Side effects were manageable especially taking steroids and anti sickness tablets for three days post infusion. I did experience constipation and insomnia as a result but took the meds to help me go as it were! So all in all - glad I did take that decision. My type of cancer responds poorly to chemo but I felt that if I was given a chance to keep things at bay hopefully - I would take it. My hair did also thin out a bit, but as soon as the chemo stopped - I could see it growing back again. x
Hello thanks for the reply and tips I am also on carbo every 3 weeks for 6 cycles. To be honest they’ve just told me it’s a stage 1c1 I will ask the question again I’m not entirely sure they can pinpoint the type as there are some unusual markers that are not typical of an ovarian cancer CK7 shows up which they see in ovarian but other markers indicated gastric. I am keen for the pet scan as that’s almost an added check for anything unusual going on, which has been booked 14th December until then it’s continue with chemo regular scans with the gynaecologist and just keeping a close eye on my body x
I had stage Ic, grade 3 ovarian cancer in 2006, when I was 48. The cell type was mixed clear cell and endometrioid, which is relatively rare and potentially aggressive. My oncologist told me that 5-year survival statistics said 70% with no chemo, 78% with carboplatin alone, 79% with carboplatin plus taxol. After she'd taken my (bad) allergy history, she decided against taxol for me. I'm still here 17 years later and have never had a recurrence. Side effects from carbo were not too bad, and I was able to go back to work part-time after the third cycle. My employer was very supportive, which helped. I'm glad you've managed the fertility sparing surgery. Keep going, keep up the positive attitude - you can do this! P.S. Movicol is brilliant for the chemo constipation!
Glad to hear your tests and exams show free and clear. In 2019 I was diagnosed with clear cell late stage 1 and aggressive, we did the carbo/ taxes with full hysterectomy because of my age . I had a reoccurrence in 2020 that I found because with cc it doesn’t seem to show up in the ca 125 . Then put on a hormone blocker for maintenance. Come to find out that chemo really doesn’t work great on clear cell. I was willing to do anything back then. If I had known more about immunotherapy I would ap for that and stay on the hormone blocker letrozole. I pray the best for you and keep in mind. You can do this , keep eating and stay positive. Fight like a warrior.
happygolucky, how are you now after you’re 2020 recurrence? How did you find out about the recurrence and how did you treat it? I pray everything is well with you!🙏
I am doing good, take letrozole daily and have ct scan every 3/6 months, clear cell doesn’t show any tumor markers in my ca125. I found my second reoccurrence when I noticed what felt like a golf ball on on the side of my abdomen it wasn’t painful but I was tired a lot.
I’m so happy you’re well. Did they cut out the golf ball or give you chemo? I assume letrozole by itself didn’t cause it to go away? I also assume you’ve ER positive clear cell? Thank you for sharing!
They cut it out yeah back in September then I had IVF so they could try and preserve fertility. Now chemo 3 rounds 4th tomorrow. I’m unsure about letrozole I just had surgery then was offered adjuvant chemo but opted for one drug only as they wasn’t entirely sure I needed chemo. I believe my chemo is a preventative measure only I have an appointment 19th February so I may ask about clear cell.
Not sure what ER positive means? My oncologist had another doctor come in and assist with the removal of the tumor and he put in a hernia's mesh, they scraped around and checked all lymph nodes and it showed nothing had spread, I didn’t have any more Chemo but the letrozole works like chemo, not as harsh, I have one more year on that drug then I am all done, so it s as bit unnerving going through remission. But staying positive and hopeful has been my shield.
ER positive means estrogen receptor positive. When a cell is ER positive, theoretically, it’s stimulated by estrogen. So w/ ER positive tumors, doctors are more reluctant (due to the uncertainty) of prescribing HRT.
Kscott10, I’m happy you managed to avoid hysterectomy bc taking a uterus out does nothing for ovarian cancer. As a matter of fact, theres no medical science that supports taking a uterus out to treat ovarian cancer bc the ovaries are seperate organs. For stage 1, it makes no sense to do that. The problem is that docs are not clear on whether it helps or not and they certainly don’t tell you that there’s no science supporting doing so in early stage OC. When I read a woman saying I had a hysterectomy bc of my age, I want to say … so you don’t think you need a uterus beyond a certain age for sexual function and prevent organ prolapse later in life? The uterus is not there only for having a child. I find it completely ludicrous that a uterus is taken out in a woman over 40 but not below 40. Aren’t we trying to save all women from cancer? If so, then everyone’s uterus should go. And if taking it out has nothing to do w treating cancer, then doctors should tell women that so every woman can make a decision which organs to keep and which organs she feels she doesn’t need. The uterus is majorly connected to sexual function which is a human right. I find it bogus that medicine would take female organs out for no reason. In any case, you’re blessed for not falling into that trap. I wish more doctors were honest with women.
absolutely agree! I’ve had 3 rounds of carboplatin so far. I have to be honest I’m tolerating it well, my gynaecologist wasn’t sure I even needed chemo but my oncologist recommended it. I’ve had to delay chemo twice due to low platelets and I got a cold one time. It seems to be dragging but I’m coping as best I can still off work it’s tough can’t wait for it to be over x
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