Hi, I'm 58 and five weeks ago was hospitalised as an emergency for an ovarian torsion, a scan had showed a large cyst on my left ovary. A week later I had a radical hysterectomy and my appendix was also removed as there was something showing on them. At my follow up this week I was told that all was well with the appendix, however cancer had been shown at the very top of my curvix and results shown that the cancer had traveled via the Fallopian tube to the ovary that had twisted. I was told that as far as the naked eye could see everything had been removed but further treatment would be needed as a preventative or to mop up any remaining cells. Apparently this is unusual for the cancer to spread that way and not from ovary down to cervix. I am to meet with oncologist within two weeks to discuss next treatment chemotherapy and or radiotherapy. I can't find anything on line regarding cancer spreading this way around, can anyone help?
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You must be in a whirlwind after your op and diagnosis, I hope that your recovery is going well.
Lots of love and please let me know how you get on.
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Do you know which type of cervical cancer it is?
She stood in the storm and when the wind did not blow her away, she adjusted her sails.
Hi, just wanted to get on touch , sounds like my experience is similar to yours. In May last year I started having trouble going for a wee so went to the GP, there was on infection so I was sent for blood tests, this resulted in ultra sound and CT scans which showed large cysts on both overies, I was told there was 70 percent chance it was overian cancer. I had a total hysterectomy in August 2017 after an agonising 6 week wait I was told it was in fact a rare form of cervical cancer and the cancer had grown up the fallopian tubes and caused the cysts. I have since had 5 weeks of radiotherapy, 1 week of brachi and I am currently on my 3rd of 4 rounds of chemotherapy. I have been told is that this is preventative treatment, hopefully all the cancer was removed during my op but not all cancer can be seen by the naked eye, this is the hope I am hanging onto.
I hope you are recovering well from your hysterectomy, take care.
Hello, so wanted to get in touch with you, I have finally found another lady that has been through exactly the same as me.
Firstly I’m so sorry for what you have been through, it’s certainly a whirlwind of emotions being told that you have cancer, and especially when you are not expecting the diagnosis!
My story is so similar to yours, I’m 44 and last August I had a large mass on my right ovary removed, I ended up having a radical hysterectomy, they took both ovarys, tubes, womb, cervix, and appendix.
Two weeks later was told cancer was found at very top of my cervix and a similar cancer in the ovary. Surgeon said they are pretty sure they got it all out but I would need chemo and radiotherapy to kill of any remaining cancer cells.
Was also told it is very rare for cervical cancer to spread to ovary, my surgeon said she has only known of two cases in the last 15 years and I’m the second! I feel we are lucky that it didn’t spread the normal route though as your talking bowel, spine etc.
They staged my cancer at stage 4b due to the spread, have they given you a stage for your cancer? I’m interested to know if they have staged yours the same as mine. Did they take any lymph nodes for testing?
Have they told you what type of cancer it is? Mine is endocervical adenocarcinoma ( can not be detected by smears, mine were also up to date )
Its pretty scary looking on internet for information, but we have all done it, I have spent hours looking for information about the way the cancer has spread and it appears that we are rare entities, and I often joke with my family about that it would only be me that gets something this rare, I don’t do things by halves!
I started my treatment last October, I had 5 rounds of chemo and 28 radiotherapy treatments I also had to have brachytherapy which is internal radiotherapy, I tolerated it all quite well compared to some, just had a few problems mainly cystitis and upset tummy, the sickness is not nice and food doesn’t taste the same, but I got through it all and I’m still fighting, just got to get through the next 5 years now hoping that the cancer doesn’t return, it really is a long journey and feel that it has changed me as a person.
Would like to keep in touch with you, we can be fighters together and beat this!!!!
Let me know how you get on with your oncologist, it’s a good idea to take a list of questions with you, I did this myself as wanted to know what I was up against.
Much love, hope you are recovering well after your op xxxxxx
hi Pad44 thank you for getting in touch, I caw my consultant Friday and it appears I too have a rare cancer. She said it was a gastric type adencarinoma, the type that could be associated with stomach cancers.
They don't know a lot about it as it's rare. Plan of action in
about 4 weeks time I'm having intense treatment 5 days a week for 6 weeks... Cisplatinchemo once a week for 6 hours and radiotherapy for 15 mins for 5 days a week. And this is done as a preventative. My consultant says she would expect a 50% curable rate the same as normal cervical cancer. Can I ask what part of the U.K, you are, I'm in Wales. Sending you lots of positive thoughts and hugs xxx
I'm so glad to find you too. Did your consultant say how the other case responded to treatment. I to was told smears wouldn't of detected it. My op recovery has been great, just this awful cloud hanging over me know. I read another lady on here, Pad44 who sounds she could be in the same boat as us. I saw my consultant Friday and it appears I to have a rare cancer. She said it was a gastric type adencarinoma, the type that could be associated with stomach cancers.
about 4 weeks time I'm having intense treatment 5 days a week for 6 weeks... Cisplatinchemo once a week for 6 hours and radiotherapy for 15 mins for 5 days a week. And this is done as a preventative. My consultant says she would expect a 50% curable rate the same as normal cervical cancer. Can I ask what part of the U.K, you are, I'm in Wales. Sending you lots of positive thoughts and hugs and please keep in touch xxx
Hello again, Wow, mine is also a gastric type cancer in my cervix called, mucinous adenocarcinoma, as u were told I also that it is rare! This was a primary cancer but I have had a magic eye procedure to check out my stomach, thankfully this was all clear.
About 8 weeks after my hysterectomy I had 5 weeks of radiotherapy then 1 week of brachi (internal radiotherapy) I then was given a break over Christmas and new year (thank god) then in January I had my first of 4 chemotherapy, this involves going in for the day and having the drugs through a drip, I'm having cisplatin and something else and I also take Capecitabine tablets every day. I was told to expect to loose my hair about 2 weeks after treatment, which really upset me, just because up till then I still looked "normal", my hair has thinned considerably but I don't have any bald patches! I have this treatment every 3 weeks so hopefully the next one will be the last. I'm still not quite sure what they r going to do after this treatment to see if it has worked or not, scans maybe? Probably the same as with u they r just winging the treatment, because it is rare they r just throwing everything at me just to make sure.
My head is completely scrabbled at the moment, that's partly the chemo, but it's just the unknown that is hard to deal with, it's a complete mind f**k!!!
I am originally from South East London but moved to Swansea about 10 years ago, I can't believe u r also in Wales, what part? What a small world!
It's so nice to be in touch with you hopefully we can be off some comfort and help to each over, I do think it is very hard for others who have not been through cancer to really understand what it is like.
Take care Debx
Thanks so much for reply. I'm in Cardiff, treatment will be at Velindre. I'm wondering if our oncologists will be discussing us ? Or if it's worth us mentioning it to them? How are you finding the treatment? I've been told my hair won't fall out but may thin. I feel great after the hysterectomy, it's crazy how we had no classic symptoms. I think as we're rare we will be well looked after. I've been told I'll have 6 hours of chemo, cisplatin once a week, and 15 mins of radiotherapy 5 days a week, for a total of 6 weeks, the last week brachi. The treatment don't phase me as its a small price to pay. Like you I get wobbles, which is understandable, however we are fighters and we will come out the other side stronger. I'm so glad we have each other to compare notes. Take care and keep in touch xxx
Yes I've now been diagnosed with a rare type called
Hiya, I saw my consultant today, I have seen him every 2 weeks since my treatment started, he does this to see how I am coping with treatment. I am having my last chemo session on Monday, he is going to reduce the dosage I think to make sure I can cope with it, my white cells r very low but I think this is normal, he says I have had the full force of treatment available. I am happy to have any treatment he recommends, I want to give myself every chance to rid my body of this hideous thing.
Yes it would be interesting to see if our cases are discussed, u would think considering how rare this is meant to be it would be flagged up somewhere!
I had my brachi in velindre, it was not painful, nothing to worry about.
When does your treatment start.
I have not got my head round "cancer" yet, how can you have this thing in your body and not feel horribly unwell with it!!!? It is the treatment that makes u sick.
Take care Debx
I too like yourself would be happy with any treatment reccomended. I go for my scans this week so they can plan my treatment. I've been told it will start in about 4 weeks time.
I am on week 5 of my hysterectomy recovery and feel fully recovered (although I know a full recovery takes longer than that)and I feel very well, I'm keeping myself fit so I can cope as best I can with the treatment. I do get wobbles, but I remind myself that as far as the eye could see, all cancer was contained and removed and the treatment although will make me feel ill is going to be a preventative and that's what I'm going to cling on to, but I whole heartily agree with you, not feeling horribly unwell and having treatment that makes you feel unwell.
Great news your last treatment is in sight, when will you have your next follow up after that?
Keep in touch, and take care, you're almost there!
Hoping you are both in good spirits despite everything, sending positive thoughts your way xxx
Well I finished my treatment on 15th December, I, like you both had to have chemo, radiotherapy and brachytherapy, I am glad it’s all over ,well the treatment part anyway.
It’s very hard this cancer journey, its certainly a roller coaster of emotions. I feel I have been luckier than some, but it still doesn’t make it any easier knowing we have had this life changing cancer.
So just having regular checkups now , will be seen every 3 months for 2 years then every 6 for the next 3 years, if the cancer does come back it is likely to be in the first two years...
so unfortunately the emotions don’t get any better yet, as still have the daily worry’s now that it will return, I’m only 44 and I don’t intend on letting this cancer beat me, but it is very hard to move on.
Shame you are both so far away... I’m in Brighton, next time I see my oncologist I will have to find out if mine is the gastric type,
I wasn’t told anything on survival rates, ( not sure I want to know )
Was just told my cancer was very rare type.
Have they given you both a stage yet?
Please both keep in touch xxxxx
Thank you for replying and sending positive thoughts our way. It will be interesting to find out if you too have this gastric type! Trust us!
I have my scans tomorrow, wonder if I get my tattoos the same time.
My treatment starts on 3rd April, and I can't wait to get it started. I'm not scared of the treatment, I'll cope with anything thrown at me, just so pleased it's being done as a preventative.
I didn't ask what stage, I didn't want to know. It was all removed and contained so that's all I wanted to know.
Take care and definitely keep in touch, I'll send you a private message.
Hi Kacey26 and Mandy
Kacey it is good to hear you have finished your treatment, r u back to feeling "normal" yet?
I have a constant horrible taste in my mouth this is making me feel sick all the time and is starting to get really unbearable. It hasn't effected my taste buds, not that I have a massive appetite, so I'm managing to eat but as soon as I stop the horrible taste comes back. Did u get this side effect from chemo?
I had a bone scan last week because I had been getting pain in one of my hips, the results show something on the scan, Dr thinks it's unlikely to be cancer but going to have a mri to check, he thinks it could be a stress fracture in my pelvis from the radiation! This cancer has made me parinoid about every ache and pain, but at least I am getting it checked out.
Counting down the weeks now to finishing treatment and getting my life back to "normal" even looking forward to getting back to work!!!
Mandy hope u get on OK with your planning scan, u will probably get your tats then, I have one on each hip and one on my public bone.
Thinking of u girls x
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