Hi, I'm new on here. I had a 7 hour operation in October to remove ovarian cancer and the bits that had spread. I was told, that the cancer has now gone. Yesterday I find out my oncologist wants me to have a very heavy handed chemo. Which wasnt an option before the operation as the tumors were to small. Now that there is a very good chance I dont have it. It was a low grade, slow growing tumour. Has anyone else come across this. Thankyou in advance.
Henryfred: Hi, I'm new on here. I had a 7 hour... - My Ovacome
Henryfred
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Terrileeloughlin
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Good morning, Terrilee.
I'm glad the surgeons were able to remove your tumors. More often than not with Ovarian Cancer, chemo follows surgery to prevent any rogue cancer cells that got left behind from causing issues down the road.
I'm curious what "very heavy handed" means. I've been on many regimens over the last 12 years, and in my humble opinion, there's no such thing as easy chemo. Each drug comes with its own list of toxicities and side effects. Although some people have an easier time than others with it.
If you care to share the drug names, I'm sure you could get some useful feedback on how the ladies here have dealt with them and tips on how to proceed if you do decide to go forward with the chemotherapy.
All the best,
Kim
Hello Kim, the chemo I've been advised to have is paclitaxel and carboplatin. I really dont like the idea of the first one. And doing some research on line, although the research was a while ago, said using both together made no difference. What I mean by that is, they are both as effective, and one of the drugs would be just as beneficial. I need to look into it a bit more. Maybe you have had one or both.
OK, so taxol/carboplatin is standard first line chemo treatment for ovarian cancer. It is a protocol that has been in place for some time. I've been on this regimen twice. Once in 2007, once in 2017. After my initial surgeries and chemo, I went into remission for 7 years.
I switched from paclitaxel to docetaxel (taxol to taxotere) due to side effects, but essentially they are the same drug. Paclitaxel is made from the yew tree, taxotere is completely synthetic.
There are reasons that certain drugs are used together. Sometimes one drug makes the cancer more receptive to the other, sometimes they attack different parts of the cell, it all depends. I am not familiar with the exact mechanism for these two. But I believe that you are the best advocate for yourself, so you should definitely research as much as you can and make the best decision for you
Right now I am on taxotere only, 1 time a week for 3 weeks, then 1 week off. And I'm not going to pretend it's easy or fun. You would most likely lose your hair, have taste changes, and fatigue. There is no reason to ever be nauseous as the anti-emetics available are outstanding now. I will tell you there are lots of things you can do to make it easier and I have been able to continue working full time through all of my treatments except the first, with followed 3 surgeries. I worked part time through most of that chemo after I recovered from the surgery.
I know it's very scary and there's a lot of information out there. I also have low grade serous carcinoma so I understand you ambivalence towards chemo. There's really no way to know which decision is the right one.
My best advice is not to blindly trust anyone. Do your homework, ask questions, get your CA125 done and go from there. If there is no evidence of disease, you can always monitor your numbers and make a decision if and when you need to.
I hope that helps. And please know if there are any questions I can answer, just ask.
hugs,
Kim
Thankyou very much for the information. I will ask my nurse tomorrow about the CA125 test. I had a blood test yesterday, so I'm hoping they will be able to tell, from that. And certainly before, anything starts. Thanks again, you've been very helpful xx
There are many things you can do to boost both your health and your options and regular ca125 tests are so important. They’ll be the best indicator of what’s going on xx
Hello Kim, I found out today that my CA125 is 16, which I know is good, they still say i have to have chemo. Everything I've read about this particular cancer, is resistant chemo. So, where do i go from here😟. Anyway I'm sure something will make sense to me soon. Sending love x
So this is where you need to do what's best for you.
If I were you, and I'm not, but if I were, I would ask the oncologist what the benefit of having chemo now would be, versus waiting and monitoring my CA125 every 3 months and moving forward if and when there was a recurrence.
That said, the reason that chemo usually follows debulking is because no surgeon can guarantee that they got all the cancer. It only takes one cell. The surgery is for what they can see, the chemo is for what they can't. They wan't to cover all the bases.
The main thing is that you are able to express your concerns and fears without feeling pressured and get answers that give you confidence in making a decision one way or the other.
Since your CA125 is low and the surgery went well, you have time to make an informed decision. I keep a journal with all of my questions. I never go into my doctor's office without it. And I don't leave until they are all answered clearly and in a way that makes sense to me. Only then do I feel empowered to do what's right for me.
No one is going to advocate for you, like you!
Go get em!
KIm
Thankyou Kim, knowing that, that is a possibility has helped. I'm gonna do the same thing about writing things down. Thanks for the tip, and the kind reply. X
It’s your choice to have either one, both or neither. The drugs in their own are not as effective, as they both do different things. Not two chemos are the same. The two drugs you’ve been offered are the standard treatment. I didn’t want any chemotherapy either, no one does, but it’s probably your best option after surgery. If you make that decision, you’ll get through it. Good luck and stay in touch and be gentle in yourself x
Thankyou for replying, I found out today my CA125 is 16, so I'll see what happens when I go to my first appointment. Xx
That sounds really positive, keep going xx
Thankyou x
Hi Terrilee. Sorry you find yourself in the same boat. I've got low grade serous OC as well (stage 3). It started as mostly borderline cells with a tiny bit of low grade mixed in. After the initial extensive debulking surgery (which saw all visible tumors removed, although the ca125 tumor marker stayed around 100), oncologists gave me a choice of chemo or watch and wait. I went on watch and wait.
Alas, after a bit more than 2 years the cancer returned, this time in lymph nodes. Another successful surgery later, this time I did go on the massive chemo. 6x Carboplatin/Paclitaxel, plus Avastin. After the Carb/Tax chemo cycle I received daily Letrozole on top of the continuing Avastin infusions. Right now I'm on Letrozole only and on watch&wait again. ca125 is around 70.
Low grade is not that easy to treat. Chemo is meant to mop up the invisible remaining tumor cells, and still often recommended to treat low grade OC e.g. given a certain spread/stage or other specific conditions, as I understand it. In some cases though, low grade OC might not respond as well to chemo as the more prevalent high grade cancer, so you might think why have chemo at all? That said... even though it grows slowly, it can be just as deadly, so the choice warrants some research in my opinion. And who is to say that yours won't respond.. maybe it does (especially in combination with other meds, as several trials are investigating at present).
You could get a second opinion from a large gyn. cancer center, ideally with a good deal of low grade / rare tumor experience. E.g. MD Anderson in Texas, or the Royal Marsden in London etc.
There are a couple of trials running (though not sure which ones would be applicable to you or nearby), and it could be that an alternative to chemo is available to you.. like anti-hormone treatment (Letrozole). Only the experts could tell, thus..a second opinion seems to be a good thing, with low grade.
Best of luck! Maus
Thankyou, I am looking into other treatments, as I was originally told, I'd only need hormone treatment. Thanks again, it was very kind of you to take the time to reply x
Just looking to pick your brains as you seem to be well informed. I've had septated cyst on ovary and both tubes removed. Pathology came back borderline serious cells. Was told not cancer but slower spreading and need uterus other ovary and omentum removed as precaution. I've read so much on ovary removal adverse effects on heart brain bones and sexuality. I feel trading great quality if life atm for horrid one full of more problems.wondering should I wait and see..
I know you addressed your query probably to Maus123, but with borderline serous OC, get that other ovary and the omentum removed asap. You don't say how old you are, but if you have not yet been through the menopause, yes, you will likely notice menopause symptoms, though if your borderline serous is not hormone sensitive, you may be able to have oestrogen only HRT to offset that. If its hormone driven and sensitive to oestrogen, well, that won't be an option, so you need to ask about that. It's better to lose the other ovary and the omentum than try to deal with full blown serous OC later... losing your ovaries too early is a drag, but ovarian cancer kills. I wish someone, anyone, had detected my serous OC when it was just borderline... by the time it was found and I had all the surgery, it was already Stage 4b and its active again now.
Miriam
Miriam thankyou for your reply..i guess just what I need to hear.i was trying to hold onto my other ovary for long term health benefits. Just trying to hold onto some quality of life when hear stories. It's all very confusing and overwhelming. I'm so sorry to hear yours is late stage. When did you discover it and how is treatment.warm hugs x
Finally diagnosed January 2018 after I'd found a huge swollen lymph node in my groin the previous October; had full debulking surgery by the end of that month (meaning ovaries, womb, cervix, tubes, 15 cm of bowel, the omentum, a tumour growing on the pelvic wall, the enormous lymph node and a few more, and anything else they didn't like the look of). I refused chemo afterwards,it was already in the lymph system anyway and stage 4b, and I'm now 69. Personal choice - had I been 50 or leading a more joyful, fulfilled life at this time, and most especially, didn't live alone with no nearby friends and family, I'd probably have had chemo.
I understand your reluctance and the reasons for it, but don't hang on to an ovary for long term health reasons - if you do, there might not be a long term at all is what I'm saying. Difficult situations demand difficult decisions... losing it now likely means dodging a much more deadly bullet. And I get that its overwhelming - its a big surgery, although what they've suggested they will take at this stage is not too bad. And if you're lucky and its not spread, you may not have to have chemotherapy, as its still borderline.
Good luck, keep in touch on here, lots of information and lots of women in varying stages of this disease, but one other thing - it should really be a gynaecologist/oncologist doing the surgery, not just a gynaecologist, so check that out with them too.
Miriam
Aww thankyou brave wonderful lady .it's so hard to talk about. Is there no family you could move closer to.hate that you are on your own going through such hard times. You had a lot of surgery already you must be incredibly strong to do it alone.warm hugs x
Thanks for the kind thoughts - its not really bravery, its just how the cards have fallen, and you just do what you gotta do. As for it being hard to talk about (assuming you mean death) I think we should all be talking about it a lot more, and I mean everybody, like my grandparents used to, back when death was a much more common event in younger people as well as old ones. It's just an inevitable part of life, that's all.
I do have family, but they're dotted about all over the country as well as some abroad, all either with busy lives, being younger, or in poor health themselves. My stepsister has been very supportive, she came and stayed for 5 days when I came out of hospital, but she looks after her daughter's children 3 days a week; there's only so much people can do to help out. I have a son nearby in London, and dear to me though he is, a physically caring, nursing soul he is not,though he does care emotionally.. Plus he's busy running his own business and finds all this very hard to cope with, having lost his father in 2016, as well as his brother (my oldest son) stopping speaking to us all when he got married to a very difficult woman, again in 2016, so he's carrying the burden of this on his own, poor bloke. Never rains but it pours does it! I feel far more sorry for him than I do for myself...
My best friends live, respectively, in Cornwall and Newcastle, I'm the one still in London. I consider myself lucky really, at least I didn't get OC till I was in my late sixties, its much worse at 42 or 50 when you might still have kids at home and are still in the thick of active life. And think of all those bullets I've dodged - I didn't get any of the other horrible things people frequently suffer in younger life and ongoing, largely been healthy and fully functioning. Plus its fair to say I wouldn't have come this far without modern medicine - I'd have died of recurrent blood clots (genetic) or cervical cancer in my forties without it. No one gets out of here alive, do they, and I did make lots of hay while the sun shone! I've asked for 'it could have been worse' to be inscribed on my memoriam, cos you have to keep laughing... sardonic to the last was my son's comment on that!😊
Regards
Miriam
Dear Miriam, You are certainly not short of friends on this forum! I have always admired you positive bravery and humour, You (along with the other "long term members") keep me going and give me hope, especially when I am low. I want to thank you and the others for your compassion, generosity in sharing information, wisdom and kindness. I wish you and the others peace and happiness and want you to know there are a lot of people here grateful you are on this forum. I hope everyone is as well as they can be in our circumstances. With lots of love and gentle hugs, Pat xxx
Well said. xx
Crikey, not sure I'm a 'long term' member, its not two years yet, and it has occurred to me that maybe I'm the opposite of brave for refusing chemotherapy, but thank you so much for your kind words, much appreciated😊
What Miriam/jwilliamsb said. Mine was almost all borderline as well upon being diagnosed at age 46, but had already spread dangerously and caused 10 l ascites which made it hard to eat, walk or breath. Yes, I got thrown into surgical menopause, but I consider it the only feasible alternative. ELse the oncologists gave me 3-6 months. And that's with borderline, not high grade. All the best. Maus
Hi I was low grade stage 3. I had a large cyst the size of a football. I had a full hysterectomy. There a few cells left behind so had chemo. That was Oct 2015. Had not heard of heavy handed
My ca125 was 44 at the time. I go for regular blood tests every six months and do the normal things. I did not respond well to chemo but my onc nurse said this was a good thing. Wishing you all the best with everything. Angela
Did she say why, it was a good thing that you didn't respond well to chemo?
Hi sorry for late reply. Yes she said it is usually a good sigm when you don't respond well to treatment. I had bad side effects from the chemo. Hope this helps.
I, too, am curious as to why the onc nurse said your lack of response to chemo was a good thing...?
I'm sorry you are in this situation. My understanding is that ladies are advised to have chemo before surgery if they want to try to shrink the tumours a bit before operating if surgery would otherwise be difficult or impossible. Some of us didn't have chemo first because it wasn't considered necessary to do that, but chemo afterwards is still often advised. I hope you make the right decision for you on whether to have chemo now. Di
Thankyou, I will.
Hello Di, I was told chemo wouldnt make any difference to the tumors I had, as they were to small to respond to chemo. So why would chemo be any use now. I've read, so many times, that chemo isnt effective to low grade serous ovarian cancer. I had a horrible experience at the mount Vernon hospital, the fault being the oncologist not the hospital.
What happened at mount vernon and the oncologist? I’m curious because my mum also goes there!
I havent been through a slow moving tumor, mine were always aggressive. I would get a second opinion regarding chemo treatments. I think they should just check your ca125 levels monthly.
Thankyou I will xx
I’m a low grader too. I year cancerversary last month. I opted for the 18 weeks of carbo/taxol and was really wondering if it was worth it.
Dr Gershenson of MD Anderson has done a YouTube video with the “cure our ovarian cancer” group who are getting research into low grade.
There are some promising developments with Trametinib to extend periods between recurrences which I’ll be talking to my onc about. Prof Gourley at Edinburgh is doing research into it with whatever money we can raise as no funding comes from major cancer charities or the government as it is so rare.
Meanwhile I’m glad I did the chemo and I’m taking letrozole but also throwing everything I can at it from the How to Starve Cancer book by Jane McLelland. My onc and GP are doing their best to prescribe the off label drugs to starve the remaining cells (the tumour burst)within the confines of the NHS. I rattle but I’m doing OK.
I intend to enjoy my old age pension. I never wanted to get this knowledgeable about this but I’m so glad this forum and the low grade Facebook page are here for their valuable support.
Wishing you the very best
Love
Alex x
Hi artgreen, I found out today that my CA125 is 16. And I've only had surgery so I'm hoping that they rethink the 4 months of chemo. I really need to find out why chemo is the best way to go, as it wasnt a option before the operation, as I was told, chemo doesn't respond. Once I find the answer, I can stop going on about it. Keep well, love Terri. Xx
I was told it can respond but is less effective than for high grade.
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