Hi Louisa, Sorry to hear about your diagnosis. I am recovering from treatment for the the same I was dx about 2 and a half years ago, I was nearly 31. I know what you are going through right now & it can be a scarey time. Please message me privately and we can have a chat or post some more on the forum & I will try to give you some info or just for some support. All the best Butterfly
Hello louisa. I had stage 2 uterine cancer, only had 28 doses of radiation, so cannot help you on the thoughts of chemo, sorry. But, like Butterfly if you need to chat via messages this way, or privately please feel free to do so.
thanks butterfly and bev i have been given choice of rad hysterrec + lymph node removal + radiation or radiation/chemo external + 3 lots of radiation internal following that. oncologist said the new chemo they would use for cervical cancer, does not cause hair loss (no longer an issue) and seems to work astonishingly well for cervical cancer having a better outcome due to a higher incidence of cancer not returning or spreading, but could cause some severe bladder and bowel damage, still as i am a runner and have always been active, (Im 49) they thought the radiation/chemo would be better for me as it would give more mobillity than the lymph node option. i am still devastated but am trying to work out what is best for the long run. cancer sucks p.s. its hard to think ill never get to run again its brought me through some tough times.
Hi Louisa, I had the radical hysterectomy + lymphnode removal + radiation + chemo + internal radiation. Truely I was more concerned with the removal of the lymphnodes than I was any of the other treatments, My surgeon didnt give me a choice. Not sure how many they removed but I think he said all that he could see, which would be all of them I would say. I have always been active and was too worried about the effects. But honestly it does not effect my mobility in any way. I am only small so not sure it thats why, but its probably more noticable to me just a heavy feeling. Only a few times has it been so bad Ive had to have it checked out. It does not stop me from doing anything I want to do. And most of the time my leg doesnt look any different then other times especially in the heat it swells a little. Exercise is one of the most important things you can do to keep it at bay. I get a bit worried about infections from bites and scratches so I have to watch that. Anyway its a big decision. What does your onco advise you to do? I would do as he/she says. Its always worked for me. I have absolute faith and trust in my Doctor and he hasnt let me down yet. When are due to start?
i have to make a decision on which way to go by wednesday, and they will make arrangements then, they just said because of my active lifestyle that the radiation/chemo might be best , but that its my decision, having said that the whole team seems divided, but i have been very exacting about the outcomes available to me , and lymph node disection terrified me because they said i would not be able to run again because it would put to much pressure on them. they have left it to me because its better to have some say in these things, one doctor said, and i am that sort of person who likes to do that anyway!i know i wont be the same again, but i want to preserve what i can in my life
Hi Louisa, Sounds like you have a good plan. And yes its good to question everything, Im like that as well probably a bit annoying but hey its our bodies and I think most doctors appreciate that. Originally I was given the option of having a new procedure done which was going to preserve my uterus as we wanted more children. I was really happy, then I had day surgery for the staging and they took a biopsy of the tumor which came back as grade 3 really nasty and agressive and it was growing through blood vessels. When the pathology results were in I went back just prior to the surgery for another appointment and was told that I was no longer a candidate for this new procedure because the tumor was a nasty one and that I had to go for the agressive treatments if I wanted to have a good chance of seeing my kids grow up. Thats where the choice was taken away from me as soon as my Oncologist said that I just knew I didnt have a choice. So basically all of this happened within about a 10 day period, on the 11th day I was in for the surgery and it all went very quickly from there. Yes there are side effects but to be honest they are minimal. Most of my family & friends were amazed how quickly I recovered and bounced back. It has been just over 2 years now and I go for my regular check ups and every now and then I have something checked out. The radiation made my bowel and bladder a bit unhappy for a while but its all fine now. Are you in Sydney? I went through the RNSH, they are all wonderful. Keep us up to date and take care
thankyou for sharing your experiences it helps alot!. my cervical cancer is abit tricky because it started at the top of the cervix not the bottom, which immediatly compromised my uterus. after exploration under aenestethic the surgeons fellow spoke to me and said there was also a nodule in the bladder. The thing about surgery that scares me is that they might not get it all or that it can hide in the cells, so im thinking very seriously about the radiation/chemo option, despite the fact that internal/external rad/chemo scares me as well, these are awfull desisiions for a known coward like me. There is a radiation/chemo mix which has shown to have great results with cervical cancer, my onco said, and i found an english site (reputable) which spoke of this and named the drug as cisplatin mixed with radiation, and said that in many cases it kept the cancer from returning, and for those whom it did return they found it took longer than would normally be to return, has anyone had experience with this?, p.s. im with the rwh in randwick
Hi Louisa, My treatments were cisplatin with radiation + internal radiation. And as far as I know this is the most effective treatment to date for cervical cancer with no distant spread or still confined in the pelvis. Im no doctor but I spent hours and hours researching the best treatments & this is it. I was really frightened about the internal radiation, but it was the easiest part of the whole thing. It was given in 3 treatments over 2 weeks and each treatment took only 10 minutes or so. The chemo was given every wednesday over the 6 week radiotherapy treatments. The chemo takes all day there are a lot of other meds given, the cisplatin itself only takes around 2 hours to go through the drip but before and after there are anti nausea meds and lots of fluids to help flush out the kidneys. By about Saturday 3 days after the chemo I would start to feel much better. The best thing is sleep, the chemo and the radiation kind of force you to get lots of it. And its the best time for your body to heal. Though it was hard for me, my youngest was only 1 at the time and he just didnt like to sleep all night!
Hi Butterfly, Your story sounds scarily similar to mine, at least in terms of what happens next. I had a LAVH (laparoscopic assisted vaginal hysterectomy) on the 16th of September, which unfortunately revealed that I had an invasive adenocarcinoma stage IB1. I was scheduled to have a radical parametrectomy and BSO on the 13th of November to get clean margins. But I was really worried that the swelling and inflammation from the first surgery was if anything, getting worse, not better. I spoke to my gyn-onco
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.