Treatment for ovarian cancer: Hello! I was... - My Ovacome

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Treatment for ovarian cancer

janers profile image
20 Replies

Hello! I was diagnosed with ovarian cancer stage 3 five months ago I have had four rounds of chemotherapy and just had a laparoscopy. The doctor says the cancer is now not detectable however she still recommends a complete hysterectomy, HIPEX hot chemo wash of the abdomen and pelvis, and removing of the fatty tissue in the area, and then two more rounds of chemo. Does this sound like too much? Is it possible I could stop treatment now and just go for regular check ups to see that it doesn’t return? I just went through menopause at the same time (The month I was diagnosed was also the last month I got my period ) and I’m wondering could that have triggered cancer? Doctor said my tumor had estrogen receptors , so perhaps hormonal changes could have triggered something? Also I had a positive Genomic instability score , and a positive Myriad HRD status, so my understanding is that a pharmaceutical called Zejula could be part of maintenance therapy to prevent regrowth. I have substantially large fibroids in my uterus. Is there relationship between fibroids and cancer? I have so many questions and I’m very grateful for any feedback. Thank you for your time

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janers
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20 Replies
Lyndy2 profile image
Lyndy2

Hello, I know this probably feels like a roller coaster ride you would quite like to get off but please don’t step down yet! It’s great news that you have had a good response to chemo. The trouble with OC is that it is very good at coming back when you thought you had got rid.

To give yourself the best chance, take the op and complete your treatment plan. Your doctors know what they are doing.

Having the debulking operation now will allow your final chemo to work on microscopic disease which remains in your abdomen xx

Doglover1410 profile image
Doglover1410

I agree with Lyndy, whilst she cannot see any disease it may still be lurking and the surgery will get it out, with the chemo mopping up microscopic disease.

It feels like you are winning, but gotta get over the finish line!

Good luck xx

Katmal-UK profile image
Katmal-UK

Personally id have the op to give the best chance of getting rid of anything that may be lurking. Might be worth speaking with yr oncologist before you make any decision which obv is yrs to make. Also, stay off dr google, thst wont help. Good luck for what ever decision you make x

Goodgirl98 profile image
Goodgirl98 in reply toKatmal-UK

seconding the recommendation to stay off google and searches.

Alice77 profile image
Alice77

Statistically you are better having the op than not. I had major doubts before my very major ultra radical surgery but went ahead and am glad I did

Yorkiepudd profile image
Yorkiepudd

Agree with the others, have the op and remove as much risk as you can. This is a rampant disease and shows no mercy. If you’ve got fibroids already then you’d probably feel much more comfortable anyway having a hysterectomy.

The decision is of course yours but it’s a no brainer for me x

janers profile image
janers

Thank you everyone who took the time to reply. I woke up this morning thinking about it and I’m going to research more, but realized doing the operation and following the doctors advice is probably the way to go, and your comments helped confirm that for me. I appreciate this forum! Best wishes to all of you. XO

Itha profile image
Itha

Hi, as all the rest said: your best chance for survival and a longer cancer free period, is to do it all:

surgery if you qualify (not everyone does)

HIPEX (if available, it was not an option for me as we did not have anyone with good experience in SA at the time)

and complete all chemo, even if no sign of disease. There might be macroscopic disease left and the chemo is needed to get rid of it

I have my first recurrence (18 months in remission) and going through it all again (major surgery on 13 Jan) and starting 6 cycles of carbo platin and Gemzar on Thu, and will probably have Avastin and Lynparza again (am BRCA1+)

Trust your oncologist - they are experts. Cancer is very complex

Leniko profile image
Leniko in reply toItha

I can empathize. I’m in recurrence. Carbo/Gem/Avastin is the treatment. Not fun, but my CA125 and CT scan show it’s working! 🙏❤️ Best to you.

Hi there, I also had very large fibroids and always had problems, I wanted them removed and a full hysterectomy, but they wouldn't give me one. I wouldn't be in this mess now had I originally had an hysterectomy. I now have very advanced cancer and may not be able to have the operation to remove my cancers. I think your medical team sound brilliant. They are offering you so much and so lucky to be offered hipex! Go for it you may never look back. Just wondered if you are a private or NHS patient? Also what hospital is offering you this treatment. Good luck! X x

janers profile image
janers in reply toWalkingwithcancer

I am in the US, in New Jersey. Yes, I do feel very fortunate being offered such treatment. Thank you for responding to my inquiries! Best wishes to you, and everyone else facing this disease.

SopSinger profile image
SopSinger

I agree with everyone else, have the surgery. In particular the omentum (fatty tissue) is often the culprit for hiding early stage spread, so the gold standard is to remove it. Fibroids are linked to cancer, but the links are not well understood, so again best to get rid. Wishing you all the best!

Carpediem68 profile image
Carpediem68

Hello. Did your oncologist stage your cancer yet? There are different statistics regarding the likely hood of recurrence according to what stage your cancer is. Later stage OC is famous for it's high recurrence rate. That being said, I have come across many ladies who have also recurred from stage 1 or 2 disease. Personally I would take the advice of your oncologist as they have seen this so many times before. Remember, no visible disease does not mean that all the microscopic cells have been killed. Some cells (stem cells) also have a way of staying dormant through chemo too, so some may survive chemo. It only takes a small number of cells to start a new tumor. The more you can get out the better your chances of a cure for this horrible disease. Best wishes with your decision xx

Leniko profile image
Leniko in reply toCarpediem68

I was stage 1C, but have had 3 recurrences. Be Vigilant!

Mysticmeg123 profile image
Mysticmeg123

hi. It sound like you are winning. Mine was similar situation to yours and my surgeon was keen to make me understand that any microscopic cells would need to be mopped up to give myself a good chance to stop anything coming back! . I took the advice and had radical surgery including removal of my omentum followed by chemo then Avastin. As I am HRD positive I have been on Olaparib for just over a year. It’s been one hell of a ride so far but I honestly do not regret this decision. I live in fear from one blood test to the next like everyone else but I am grateful to still be here 2 years later. You will make the right decision for you but as so many lovely ladies have said already, your Oncolgy team will be best placed to answer your questions. Good luck with whatever you decide and I wish you well on this journey 🙏🏽

Leniko profile image
Leniko

I opted for a hysterectomy. I wanted to decrease my chances of recurrence. I would do what the Onco suggests and hopefully you’ll be done with the whole nasty business!

JanCan15 profile image
JanCan15

I was stage 1A and still had radical hysterectomy and chemo. The cancer was high grade and aggressive. I’m 7 years cancer free. Sometimes I wonder if the doctors did a bit too much since I was only 1A. But I don’t regret it. It’s a sneaky cancer. I’m also in US

Summergold2 profile image
Summergold2

it is a horrible cancer and do everything you can to get rid of and keep at bay!

Hi, as everyone has said...have the op! Once I recovered I felt like my old self again...this path has lots of hurdles to get over but once you get over that finish line you will feel so much better.This chat forum has changed my mind set immensely so keep chatting. Be kind to yourself xx

StilCrazy profile image
StilCrazy

Hi

I can't comment on drug protocols as I am not a medical doctor, but the hysterectomy is an easy, relatively painless no-brainer option. I felt a million times better after the hysterectomy. Once all oestrogen is gone, you will be much safer in terms of tumour recurrence. The fibroids are at best a source of inflammation which is pro cancer. They are debilitating, cause anaemia and blood loss and pain. Time to get rid of a uterus that is adding no value to your health :). Try to avoid adding symbolism to the loss of your "femininity" - you are still a woman with or without a uterus.

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