Hi Harleyp123,

Welcome to Cancer Chat, although I'm sorry to read of the experience you've had and what brought you here. It sounds like you've been through an awful lot up to this point.

Unfortunately I'm unable to advise on your question. As it's treatment-related, if you have any concerns that you'd like to discuss with our nurses, you can give them a call on 0808 800 4040 (Mon-Fri, 9-5). Please note thoough that they are also unable to diagnose or give a medical opinion - but you may find it useful to chat things through with them.

Otherwise, hopefully others will be along soon if they've had a similar experience. Do feel free also to browse the forum for similar topics.

Wishing you all the best.

Ben

Cancer Chat Moderator

Hi Harleyp123

I saw your post and had to reply. I had CC diagnosis in July 2017 after hysterectomy for pre cancerous cells.  Had chemo rads in Oct/Nov 2017 then after all this started enjoying life again, went back to work etc.  Then recurrence diagnosed in Jan 2019 in ovary.  

I have had debulking surgery (ovaries, omentum & appendix removed). Im now having chemo & targeted therapy.  I think treatment options may differ depending on where it has come back but I’m no expert however the cancer research nurses are good at talking things through.  

Like you I have positive days and black cloud days which are horrible.   I have a 6 yr old and 18 yr old daughters.

The consultant says she is really pleased with how things are going and I have to say this round of treatment is much more tolerable than when I had chemorads.

I hope your managing to get through the dark days and let me know how you get on.

Sending positive thoughts.

xx

Hi Harleyp123

My hysterectomy was for pre cancer (CGIN) but pathology found cancer in it, so I was referred to the specialist hospital and they reviewed everything and got a 2nd opinion from an expert in Birmingham who concluded cancer had been there all along.  

I had an Adenocarcinoma mixed with a bit of neuroendocrine tumour so I think they felt Chemorads & brachytherapy was the best option as adjuvent therapy.

I think some of the margins might not have been clear either.

It was a massive blow to get this 2nd diagnosis, so traumatising.  Targeted therapy stops cancer cells growing & dividing (I think).

So are you having a scan for a possible breast cancer or recurrence of Cervical?  

I get so anxious about it all, do you? 

I do hope your smear is clear.

Take care xx

Hi Harleyp123

That was interesting about a recurrence to ovary being rare - 1%!!!  Where did u find that?

xx

Hi Suzstar189

Wow you have been through the wars! It is like a roundabout with little chance of getting off. I really do hope I read the best possible outcome for you.

I had read about the 1% recurring to the ovaries on Jo's trust. There was a lady who also had an ovarian recurrence and explained the chance of recurrence being less than 1% and other details.

I will find the link and post it for you in the hope that it can help or bring some sort of comfort. 

I have had an MRI to await cervical cancer results as this will mark a year from treatment, either way a very long way to go. During this time I have had a surgery to reverse a colostomy and a temporary ileostomy fitted until a further reversal can be done in 3-6months.

One week after being home from the colostomy reversal, my husband found a swollen lymph node on the outer line of my breast. I reported this to my gp the next day when getting my wounds changed from surgery. I was then referred to hospital for breast cancer checks within 14 days. When I attended I was felt around breasts and underarms. I was told I have "glands up" in both underarms and multiple again on my right breast. I was assuming I would have a scan at least but I was told they were in short supply that day and I would be sent a letter with a date to attend a scan. I am now waiting on that letter and my head is all over the place! Underarm pain/ ache is persistent and lymph nodes still swollen. 

I am sure I make it worse but it does send my head in a spin and down the worst possible avenues. I am also waiting on my return check up for the surgery (all well as far as I know) and my results from my cervical MRI. 

You should be really proud of yourself for the journey you have already made including all others that have had to take this road. On top of that you have had the daunting aspect of C raring its ugly head yet again! 

Please try to stay strong and I will gladly be here to offer you support throughout. You are very brave and already a real hero even if none of us feel that way the majority of the time. We dont get to choose this life but we do get to choose how we deal with it. I really do believe there is an inner strength we find when cancer takes us on that no one outside of this really understands. 

Xx

Hi Harleyp123

Thank you for your wise words.  You have been through a huge ordeal too.  Did you have to have surgery and a colostomy due to damage?

Before I had my surgery in January they werent sure whether I would need one but I didnt in the end.

I will also be here to offer you support, I hope you are doing ok today?

Xx

Hi Suzstar189

Yes I finished my treatment and got back to fitness and work etc. Then I went on holiday to South Africa in Augist, we had this book before my diagnosis as a once in a lifetime trip for my parents. My dad had been diagnosed with colon cancer a few months before my diagnosis and then cancer in his kidney. Since then he has been diagnosed with esophageal cancer bless him.

Whilst in south Africa I had a knotted feeling in my stomach and it has become hard. I could not eat, had a fever and chills. The pain could not be cured for longer than an hour. The last few days I was stuck in my hotel bed. I knew I had to get back to a UK hospital so I faked being well to board the plane. Within a few hours of landing (4 days of being unable to move well) I took myself to hospital. (August 31st).

I was taken to emergency surgery where they opened me up but my pelvic area was matted and they did no further investigations. I was given antibiotics and sent home after 2 weeks. I was clearly not well but all checks had been done. I was in agony and nothing was helping. 4 days later I returned to hospital as I hadn't slept in most 17 days. I was hallucinating and then rushed to emergency surgery again. I had an abscess that had grown by 8cm from first admission to readmission. It had perforated my bowel which had kept me awake with the pain. It caused sepsis and I was very close to death. My husband was told to assume the worst outcome and little else.

I woke up to a colostomy bag and a reopened abdominal incision. I remained at hospital for 2 more weeks as my bowels completely shut down and the infection was hard to fight. I had irrigation over many days and it eventually worked. My fever reduced over that period and I was allowed home to recover,September 30th. 

The reversal surgery I had last month was much the same. Open surgery but all my pelvic was entrapped in scar tissue so I was in surgery twice as long with the on call surgeon being brought it to help my surgeon manage. The colostomy was reversed but due to the strain an ileostomy was performed. This will be reversed in 3-6months. I am yet to have my follow up with my surgeon. 

It's been a long road that's for sure! 

I appreciate your kind words and I hope you have a lovely weekend. I am feeling okay today and plan to have a bottle of wine to celebrate  the end of a short working week!

Xx

Hi Harleyp123

I hope you enjoyed your bottle of wine?!

I cant believe what you have been through, you are like super woman!  You must have felt so ill or did they dose you up?

That must be hard with your dad being poorly too? How is he? 

I had to go to hospital last Mon due to infection so pumped with antibiotics so no treatment last week.  Got it on Tues instead.

xx

Hi Suzstar189

I am happy to report that I very much enjoyed my bottle of wine! How was your weekend? 

My parents live in Southern Ireland so I do not see them regularly but my dad seems to be coping well. He is waiting on an operation to check for cancer cells in the stomach. They drain the stomach and the flush it with salt water. The salt water is collected and if any cancer cells are present it will be palliative care. There is a chance that if no cells are found he could have chemo, then an operation, then chemorads. Weirdly there is 40 years between us and we have had different cancers but at the same time. One thing happens with me then one with him. It's like a cruel game of tennis!

I would love to say I was dosed up but I am against taking pain relief unless really necessary as I like to get back on my feet as soon as possible and pride myself in getting better than I was pre surgery. I think I like to regain the control that is taken away from us all when this type of thing happens.

I went to the go for a smear yesterday before a wound change. The nurse said she had read my notes and that as I had a trachelectomy (removal of cervix & top of vagina) that it couldn't be carried out. I did say that I thought it would be impossible but thought there may be an alternative for patients like me. Turns out only a consultant can do a 'vaulted smear' and that I am to ignore follow up reminders for smear tests. Slightly insensitive for those that do not want to be reminded that they do not have a cervix up until they are 65! I am now attempting to have myself taken off the reminder list. 

Are you having treatment today? I hope you are feeling better and the infection has been cleared away. Your doing really well and you should be very proud of yourself, keep it going!

Xx