April 17, 2015 at 3:18 am #87442sallypaMember
hi michelle, i would recommend talking to your surgeon. my sister had her first resection and then gem/cis. the cancer came back and she had a second surgery. she then had a second round of chemo. the cancer then spread to her pelvic region and she had a third surgery. she recently went thru a round of radiation for a pelvic tumor. she may not be eligible for any more surgeries but you should know that multiple surgeries are possible. you have to keep fighting this cancer. it doesnt give up. if the drs cant do another surgery maybe targeted radiation could be an option to shrink the tumors. your sister sounds a lot like mine. my sister never complains. when she is on breaks from treatment no one would know she even has this disease. dont give up. we have been fighting this for over 4 years now. stay positive. always be willing to look for 2nd 3rd or 4th opinions. we have gone to a number of drs looking for the best options. iMarch 30, 2015 at 9:01 pm #87441mizzey100Participant
Thanks Catherine and Marion
I will wait to see what the Surgeon says in her meeting in May and will ask about a re-section again. Although it is only now after 6 months that she is gradually recovering from this major op.
I guess it is hard as I have now finished the last treatment with her and it feels so much more like we are doing something when she has the chemo. It just highlights to me that I have still not accepted what is happening to Kim and I have to at some point come to terms with her prognosis. However she is my soul mate, my light my everything and I refuse to give up on her. She is a quiet humble person and does not want to kick up a fuss where as I want to scream at the world and ask why her.. Then I found this website and without you guys I would not have the courage to ask and question her oncologist so for that I am so very grateful.
Forever grateful and all in my prayers
Michelle xMarch 30, 2015 at 7:48 pm #87440marionsModerator
Michelle….I believe the hardest thing is to not receive answers to our questions, but sometimes and especially with this cancer, responses to treatments as well as disease presentation varies from person to person. Therefore, as you have mentioned, it becomes a waiting game.
Research is moving forward and for all we know, your sister may not have to deal with a recurrence (if so) for quite some time to come. Who knows what is in the pipeline and can be applied to patients within the near future?
The definition for nodules and tumors are used interchangeable – all the same.
Do tumors stay dormant – yes, that’s possible.
Personally I would look for the advice of the surgeon re: a possible second surgery to remove the nodules. If not possible, then other directions will evolve.
Please make sure to verify everything mentioned with a qualified health care professional.
Stay strong, dear Michelle, and try to enjoy the good response and try to take a little break from it all.
MarionMarch 30, 2015 at 10:07 am #87439middlesister1Moderator
At one point in my mothers treatment, her ONC was going to keep her off chemo until she started feeling badly or if a scan showed that her one tumor was starting to grow again or spread. As you have seen with your sister, the GEM/CIS can be tough to stay on for prolonged periods and my mother’s doctor was concerned with doing more harm than good. Others seem to stay on the GEM/CIS until it loses its effectiveness or the side effects are too harsh and they may be put on other types of chemo.
My mother had a surgeon, but once she had the unsuccessful surgery , he was not involved in her care and we meet with an oncologist and interventional oncologists. I think getting the information from Helen and seeking a second would be something you would want to do as soon as possible.
CatherineMarch 29, 2015 at 10:51 am #11091mizzey100Participant
My sister has had her last cycle of GEM/CIS this week which has been well received and has shrunk the nodules in her liver. Although this is great news we cant help but feel what happens now.
Does the cancer stay dormant?
Has anyone got experience as to how fast the cancer grows without any treatment?
We saw the Oncologist who said that it may be that it stays dormant for weeks or months. She will be having an MRI in the next few weeks and results given to her in May.
I did ask about future options but it seems to be a waiting game as to when the cancer develops.
Anyway I asked about SIRT but apparently that is mainly treated here in the UK for patients who had bowel cancer and secondary liver??
I know and have read that its important to get a second opinion but we dont know when to do this. SHould this happen when the cancer develops or whilst it is still at Stage 2.
My sister is due to see her Surgeon who carried out her resection back in August at the end of May, so will ask him as to whether she can have another resection. The Oncologist said that this is not likely as the nodules are deep within the vessels??
Im so confused as I also asked her where was the cancer it is in the part that the surgeon did not remove. This is why I asked about SIRT of a possibility of removing it. It is so hard when asking these questions as we only get a flat no answer and often hard to push the case when I do not have the expertise/knowledge to argue her corner.
Also they are calling the spots nodules? What’s the difference?
At the beginning her prognosis was given to her as 6 months to a year but I cant see how this is possible as she is still stage 2 and the gem/cis has managed to shrink the nodules?
I know many of you have been so kind offering me advice on the introductions page but now we are at the next stage it seems more scary as in effect she is having no treatment now until the MRI shows any change? This feels more daunting as we just dont know what to expect.
Please can you help and share your experiences and answers to my questions.
I have contacted Helen from AMMF who has given me details of consultants who specialise in ICC but as mentioned above not sure when to go down this route. Maybe after seeing the Surgeon in May?
Look forward to hearing from you
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