Hi!
I was diagnosed with CC last November. Initially told it was Stage1b then this got bumped up to 3b after difference in opinion meant a second opinion (from another hospital) was brought in. I underwent a radical hysterectomy. My ovaries were taken after I’d been assured they wouldn’t be. It was confirmed during my op that the cancer had spread to my lymph nodes, which burst during surgery. I had 25 doses of radiotherapy (5 days a week for 5 weeks) along side chemotherapy once a week for 6 weeks and two doses of brachytherapy. During my treatment I asked how did they know it was working, to which I was told “we don’t. We won’t know until you have your scan 6 weeks after your treatment finishes”
Well it’s now been 6 weeks and I’ve had a meeting with my oncologist who tells me that as far as he’s concerned I’m cancer free, that I’m cured having received curative treatment.
I’m not having a scan until the end of August, which won’t be to see if there’s any cancer there as the dr says he doesn’t expect to see anything on the scan, but that this scan will be used as a baseline for any other future scans to be compared against.
Has anyone else found themselves in this position? Having the all clear without any definitive results confirming this?
I’ve had a really bad experience with all the Drs involved in my case throughout my whole cancer journey even since before my diagnosis (I’ve been going to the GP with symptoms for approx 24+months and told that everything was normal and nothing to worry about) I have lost nearly all faith in Drs, though must admit I have some faith in my oncologist as he was able to identify the cause of many sever symptoms I experienced throughout my treatment and treated me with success immediately. I’ve been misdiagnosed nearly every step of the way so feel like I need to be prepared for something else to change.
I just find it hard to accept that they can know for sure when I haven’t had a scan.
Hi Lauren...I had similar treatment to you for 1b2 and I didn't get any scan at all! I am absolutely convinced you are not a 3b as they most definitely do not do a rad hyst for anything above a stage one! I would query this. Good luck, h x
I am so sorry to hear what a shitty experience you have had. I'm not surprised that your faith in doctors has taken something of a battering and I hope that one of them somewhere does something to rectify this for you very soon. To the best of my recollection follow-up scans are more normally at ten to twelve weeks after the end of treatment. I realise that waiting until the end of August will take you significantly beyond that but I hope that it brings you comfort and confidence when it finally happens. If it makes you feel any better at all, I had exactly the same treatment as you to the letter, it has all worked perfectly and I am as well as anything.
Originally I was stage 1b but this was then changed to 3b after it was confirmed during my op that the cancer had spread. Before my op there was difference of opinion as the person who reviewled my scan didn't believe there was any spread, as it was xmas and they had holiday to take, someone else by chance came across my scan and believed that there was enough evidence to suggest that the cancer had spread. My scan was then sent to another hospital, where they too believed it had spread. By this point I was already booked for a hysterectomy, so we went ahead. During the op there were complications, due to the spread of cancer into my lymph nodes, they had become so enlarged that they burst, which also increased the risk of further spread. 4 weeks after my op I started chemoradiation, which wasnt originally planned for.
Theres been a lot of conflicting diagnosis' and matters of opinion throughout my treatment, which is why I have lost faith in absolutely anything I'm told. I generally get told something completely different a few days/weeks later.
(Xmas eve I was told there was minimal cancerous activity and I could maintain fertility, week after I was told I could have either a trachelectomy or a hysterectomy, then 4 days after that advised to have a hysterectomy but promised I could keep my ovaries, woke up from op to be told ovaries taken, cancer has spread, stage 3b need chemoradiation - and to think that for 2 years prior to all that I was told by GP PCB was normal for someone my age (29) and that it's nothing to worry about!!)
I have contacted PALS outlining each step of my case to which I have received 3 apologies -1 from GP for not referring me sooner, 1 from the hospital that told me that they had conducted a smear last year but hadn't and 1 from the surgeon for taking my ovaries having promised he wouldn't.
Thanks Tivoli, it does help. I think I'm more worried because I've been told to expect a scan after 6 weeks. If I had been told August from when I initially asked then I wouldnt be thinking much about it. I guess I just got my hopes up that I could try and put all this behind me sooner rather than later xx
Hi. I can only give you my experience which was that I had am mri scan 3 weeks (I think ) into treatment which showed that my tumour had shrunk enough for braccy. The I had 2 lots of braccy and an mri at each session. This was to check the rods were in place. During the braccy the consultant came to see me and told me my treatment thus far had worked very well. She could obviously see when inserting the rods and also on the mri scan what was left.
I had a 6 week check up when I asked what she saw at the braccy. She said there was no obvious sign of tumour.
Perhaps your consultant is going off the braccy scans. Can you perhaps phone the hospital and ask
I think I'm going to have to ask them a few questions. I didn't have any MRI scans throughout my treatment. I've only had the one and that was before Christmas, so before my operation And even then that was the one that there were differences of opinion over. I didn't have any scans during my brachytherapy treatment either. Ever since my operation they've said they think they've removed all the cancer and that the chemoradiation should destroy and microscopic cancer cells, so I can only assume that the CT scan that was performed at the start of my chemoradiation showed no cancer at all, which must be why they're so confident. It's confusing and frustrating as they told me that it was so bad that they decided to remove my ovaries, as they would be obliterated during chemoradiation which, in their opinion,I so desperately needed.
(Some Background Info) Back in January I refused to have treatment until I had harvested my eggs, my surgeon promised me that he wouldn't remove my ovaries and assured me that I would be able to harvest them after my hysterectomy - as mentioned before, I awoke from surgery to be told that they removed my ovaries because the cancer had spread. I'm beginning to feel that they were being over cautious and have since found out that it wasn't as bad as they thought.
After being told I wouldn't be having a scan, a week later, I received an appointment for a scan. I've now had the results and it's been confirmed I'm all clear. X
I can see you have been through the mill!! Feel bad you have had such an awful time but so glad you have received the best news and you are Cancer free!! : )
As to your journey, I would write an official complaint to the hospital Trust and seriously take some legal action. I am in the process of doing that & also writing a patient story so that the Board can listen & learn from the mistakes that have been made From what you say regarding your GP & smear test there is medical negligence there.
I wasn't keen on starting Legal proceedings but after the internal investigation the hospital Trust did, they advised me to get a solicitor. They words are ' We have insurance for this, when we make mistakes'. Please look into this as I know money won't buy back your ovaries but it will give you the opportunity to maybe take extra time out from work & get yourself physically & emotionally well again.
I wish you lots of luck for the future & take care
Thank you, I too have been told by some of the medical professionals that have treated me that I should seek legal action. I have made official complaints (3 in total) In one response I was told that the dr, who told me he had conducted a smear when he hadn't, no longer works for the trust so they can't discuss anything with him. The surgeon has apologised but feels he provided me with the best course of treatment and the best chance at surviving. My GP apologised for not referring me the first time I went regarding symptoms as NICE guidelines instruct.
I'm currently at the point where I'm trying to build the strength to take this further as I do t feel emotionally strong enough.
I really hope you received good news following your latest scan xx
