Hi fellow fighters,
I was diagnosed in January will stage 4 cancer, in the bladder, cervix etc, after 2 TURBT opps, they confirmed i needed 6 weeks accelerated chemo and major operation would follow.
My journey of chemo started in March and ended 10th April, i had some side affects but kept fighting through with the attitude it could be worse and this is to make me better, i was very lucky not to lose any hair (small shedding but when they say you will lose all your hair and it doesn't happen i felt extremely lucky, my oncologist said this is a first for him in 20 yrs)
They then did a CT scan after the chemo and on my visit to Oxford to meet about the operation, i was told they discussed at the MDT meeting the operation may not go ahead as the chemo had not worked and the cancer was to far advanced. They also gave me the option of radiotherapy, i was sent fr a MRI and results to be discussed at the next MDT meeting i asked if you don't operate what does that mean and was told i would have around 18 months left to live. The surgeon said he would call me after the meeting to let me know the outcome.
3 days of absolute distress & worry for me & family the surgeon called to say they would do the operation as the MRI had shown a more accurate result of the chemo had worked on reducing he tumor. The operation was scheduled for 12th May which then got pushed to 19th May, the op was 9 hrs long where they removed bladder, urethra, cervix, womb, part of my vagina. plus lymph nodes, i was in hospital for 10 days as i caught an infection, i then had to go back to Oxford twice for scans as i was getting alot of pain and bleeding. The found another infection and internal leak. After another scan a week later they told me everything was ok with the infection and leak.
I had a follow up appointment for 12th July, between the operation and 12th July i called Oxford a few times to tell the surgeon i was still getting pain and bleeding, each time was told this is normal.
On the 7th July i received a call from my oncologist who gave me the best news ever the operation was a success the biopsy results showed the cancer had been removed as it was predominantly in my bladder and no sign of it being in the lymph nodes.
The then offered immunotherapy once per month for 12 months, i was so happy and couldn't wait for the therapy to start, i had a holiday with the family (last 7 months had been exhausting) i would start the immunotherapy on 23rd August, this went ahead i mentioned again to the nurse as highlighted before i am still bleeding and in pain.
She suggested i speak to the surgeon again as that didn't sound good. The surgeon called me a couple of days later and said the same thing again nothing to worry about this is normal after the major surgery you had but we will book you to come back into theatre within the next 2 weeks so we can check where the bleeding is coming from.
This terrified me theatre again but lets do what needs to be done, in the mean time my oncologist called to see how i was after the immunotherapy and that the surgeon wanted to investigate the bleeding etc, i then asked can we do a MRI or CT scan to have a look before surgery, response of course we can organize this. The same week i had MRI & CT 8th of September, on the 16th Sept, i get a call from the Oncologist to tell me over the phone the cancer is back, present in your pelvis and spread to the lung.
I was in total shock, within a matter of weeks its back full force, the oncologist asked me to get my family around me and he would call back that evening, the news go even worse, it was not curable but they will carry on with the immunotherapy but without any treatment i now have 6 months to a year left to live (my family had to hear that down the phone)
They have also suggested i consider radiotherapy i have an appointment this week to discuss this. I have tried to be so strong & positive through this journey but the words 6 months left keeps going through my head, i cant sleep or think straight. I am a fighter and will continue to try and keep hope but i am getting more challenging days than positive ones.
Any advice on how to cope with news like this would be great. i have also asked for a meeting with the surgeon and oncologist i have lots' of questions i feel i need to understand more.
On top of the cancer the op has kicked me into pre menopause the surgeon did not even mention this is when my hair started to fall out, no follow up from Oxford surgeon after a major operation seems odd only responded when i complained about the pain.
Hi Keepfighting, you have had alot to deal with and the time given is just an estimate. Doctors are only talented humans. You'll find on here lots of people including me have gone past our sell by date. You've come to the the right place for support from people who are in the same position. If you feel like crying do so, kick the pillow if you feel angry. Be kind to yourself. Write all your questions down for the doc's. It takes a while to get use to you diagnosis and treatment will become part of the new normal. Keep posting. Sending big hugs xx
Oh I have no answers here, i am lost for words, so much in a short space of time,
Only so many times you can get kicked down, and then we find strength from some where, i hope others come along, to support you, we all have different views on things, At times it is just good to have a rant, which we all have done.
Some one always here when you wish to rant, xx
Hi keep fighting,
I'm sorry to hear about all you've gone through. I was diagnosed in January as well, click on my username to read my profile. I have some idea of how you feel when pain is explained away as post op pain but is actually more cancer. I also know how it feels to have had bad news after bad news. The worry and pain gets you down.
Try not to focus on the timeline they've given you. If they've offered radiotherapy then this surely must give you more time. Also try not to look too far ahead and grab onto the fact that there is still treatment they can offer. It is very difficult and words which were said at my bad news apt still haunt me now. I hope you get to a place where your mind and body are more settled and stable. Best wishes for your next treatment.
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Hiya, sorry to read your story. What a nightmare experience.
I would say though, regarding the prognosis (a) no one knows - it's all uncertainty, and (b) you've typed above 6 months with no treatment. But you are getting treatment (immunotherapy) so 6 months doesn't apply. It would only apply on a best-guess if you weren't getting immunotherapy or radio or chemo, or drugs etc.
Hi Moi2, thank you for the lovely reply, i had the appt today, you get so many conflicting messages its crazy, they said today the radiotherapy us purely for pain relief and vert small chance it will reduce the tumor, however this is not what will end life he believes people can live with pelvic cancer for years, it the spread to my lung and possibility of it spreading more areas. The hope is the immunotherapy is my best hope.
Yet a consultant last week said i am more concerned on the pelvis than the lung, so confusing. For my own piece of mind i am going for a 2nd opinion. He also said today drink & smoke if you want, eat what you want. Yet the chemo place i get the immunotherapy said no to any drinking/smoking if you do and try eat as healthy as possible. which is the route i have been taking.
I will keep updating on here in case it helps anyone else.
Lots of hugs back to you too xx
Hi Sisrermoon, thank you for the reply, very similar situations for us both, i just read your profile, so sorry you have had to go through so much too, in such a short space of time. Today i was told they will do radiotherapy to reduce or hopefully take away the pain 5 days the treatment it will be for, very small chance it will reduce the cancer.
He said down the line they can give 1 more radiotherapy but no more than 2 treatments of this.
He mentioned they can do post radiotherapy when i asked why was this not suggested, he said wouldn't have been possible....... He did say ask about chemo with my oncologist but he thinks ive had the chemo and it didn't kill the cancer as its now in my lung. Its not what is there currently that will finish me, its if the cancer spreads to other areas.
I am seeing my Oncologist next week to ask is there any possibility they can offer anything toi stop the spread or is my only chance immunotherapy.
Lost of hugs to you