I saw my oncologist a few dsys ago for the result of my scan which was done after three rounds of chemo. It wasn’t the news I wanted to hear but it wasn’t all bad news. I had a partial response, which is positive, but IDS is not suitable as I still have significant mesenteric disease, which they weren’t confident on being able to remove allof it due to its location over the bowel. I’m to continue with the carbo/taxol/Avastin.
when my clinic notes arrived on Friday , it repeated what I’d been told but in addition said I would be reassessed for DDS? Not heard that before, but googled it. I found “Drug delivery system”. Does anyone have any knowledge of this? It was also written that at this point there was a possibility of asking for a second opinion in Birmingham. Although I know that I can ask for a second opinion at any stage, is it usual for the oncologist to suggest it?
thanks
Bev
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Beaver54
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I don't know about IDS/DDS. Is IDS interval debulking surgery? But I'd say it's pretty unusual for your oncologist to volunteer to get a second opinion. But unusual good. It may mean they know that other hospitals are doing different things. I'm writing for my sister and she had to fight to get put forward for a second opinion, only for the second hospital to deny the request. Too much demand. So I'd grab that if offered. Found this re DDS: pubmed.ncbi.nlm.nih.gov/236.... Seems positive - less toxic. I'm not sure if moderator will allow web address so will also send in a private message. Sorry, moderator.
Good luck. Do you have someone to attend appointments with you? They can ask the questions. It's arbitrary what they decide to explain. xx
Hi thank you for your reply. Yes IDS is interval debulking surgery, which is what I was hoping for.
DDS wasn’t mentioned during the consultation, it was just in the follow up letter, so I didn’t have the opportunity to ask about it . Thank you for taking the time to look it up. I’ve not seen it mentioned on this site before and wondered if anyone had experience of it.
I did think it odd that a second opinion was suggested by my oncologist, and you’re right, I will go for it, as there must be a good reason why it was suggested. I’m sorry that your sister was denied the opportunity. It doesn’t seem right somehow. Surely it’s her right. I wonder if her GP or PALS can help? Im very new to all of this and learning as I go along .
I was in exactly the same situation and I think it means you will be reassessed for debulking surgery. You could check with your clinical nurse what DDS stands for. I was completely gutted when I couldn’t have surgery after the 3 rounds of chemo. I saw it as a negative thing. I had another 3 rounds and then had the surgery with good results. When I spoke to my surgeon she said that if surgery had been performed after 3 rounds I would have definitely had a stoma. As it was after 6 rounds they could “peel” it of my bowel. The MDT team will be working in your best interest and we are all so individual with this disease. Wishing you well x
thank you Kamloops. That makes sense and your own experience is reassuring. I have left a message for my clinical nurse to contact me when she returns tomorrow, but I am impatient 😁.
Hi , it is difficult to reply without lots of information . I can only tell you of my experience . I had about 5 rounds of chemo before ultra radical debulking . The tumours were on my small intestine and couldn’t be completely removed . I had everything removed including the omentum and I needed a stoma ( ileostomy ) . That was 3 years ago and the simple fact is that I would not have survived very long without that operation and a stoma . Don’t be afraid of an ileostomy of you need one. I live a perfectly normal life !! — apart from continued treatments. You do need a very skilled surgical team . I don’t know where you are located. You can definitely ask for a second opinion . As I understand it, some of the Leading hospitals for ovarian cancer include the Nottingham University Hospitals ( where I had my op ) , the Christie at Manchester and the Royal Marsden at Sutton . Best to research the specialist and look for a surgeon skilled in Ultra Radical debulking . I have continued with various treatments but that seems to be the option for most people . I hope that is helpful and wishing you the best of luck. Do keep positive and do take that second opinion. 🙏🙏❤️
Thank you for your reply to me and glad to hear that you are doing well.
It is the fear of the unknown. I’m sure once I know exactly what’s going on I can deal with it. I’m still waiting for a call back from oncology to clarify things. I will definitely have a second opinion xx
Hi. I am guessing DDS might be a port or PICC line. I highly recommend getting a port. No more looking for veins. Once it’s put in you don’t have to worry about it.
Hi Delia2. Thank you for responding. I haven’t heard back from any of my team, so I’m still in the dark at the moment. It sounds like a port works for you. It’s not been suggested to me , not at the moment anyway. x
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