I am hoping someone could give me some advice or any information. December 2016 I was diagnosed with stage 4 ovarian cancer which has spread throughout my lymphatic system. In fact that was how this was discovered. My rymathologist requested an urgent ct when I showed him a small swollen lymph node on my left collar bone (my gp said it was just one of those things). I was then immediately sent for a biopsy and the results stage 4 OC. The oncologist has given me 12 months give or take either side of that figure. As my blood plates are dangerously low I was advised that chemo would put me at high risk of stroke or brain haemorrhage. The chemo would not get rid of the cancer and it would not stop it. I decided against chemo. I am on oramorph for the pain but that is it. I have been offered radiotherapy to help with the pain and advised the more you have it the less effective it becomes. So I have decided to leave it until later. I am 53. Has anyone been in this position or know of anyone with this stage of cancer? Is there anything I could look into to help or anything treatment I could ask for?
I would really appreciate any communication.
Fernie
In just need some advice on my moms OC stage 4a. She has been refused Chemo now because her oncologist is saying that it will do more harm than good. They have now arranged palliative care which had frightened us to think that she is steering towards the end if her life. I feel we need to get a second opinion but how and where from.
Please help
Hi
Im a breast cancer survivor, but at same time as I had this my oldest and dearest friend was diagnosed with Stage 4 Ovarian cancer, had a 5 hour operation as had spread to lungs, and bowel but nearly 3 years on she is still very much around and enjoying life. In fact her, I and another friend are off to Shard on Monday for champers visit and tea in Covent garden. She didn't have chemo as her kind of cancer didn't react to it but is now on a hormonal drug, cant remember which one and has 3 monthly check ups but all is well, I know hers was a very slow growing cancer so don't know whether was like your mums, but it was Stage 4.And my friend was told by her oncologist that all patients he has with her cancer and Stage 4 are all alive and well,. So please don't give up hope and possibly yes a second opinion sounds a good idea. Junex
This post has given me hope as I sat in Oncolgy today. I'm stage 4 and it has given me a lift to read this ....Thank you !! x
Having hope and mental positivity goes along way. Good luck. x
Hi Lorna,
Thank you for replying, Its a pleasure , I do think we need more positive stories re cancer, ok we all know what can happen, but so many people are recovering from it and living with it now, I think sometimes we can dwell on negative too much. My dear friend had cousins and Aunties who died quite young with breast or ovarian many years ago, but her mum had it and lived till well into her 80s she has been tested for the gene,but they say hasn't got the BCRA gene ,but there is possibly some connection, She says she feels fortunate she got it when older and now when its so treatable, As said she has to have the 3 monthly check ups but she feels well and looks well, It was so strange we grew up in same village,our mums were pregnant at same time so weve known each as long as you can, and we both had our cancers at same time. Keep us posted on how you do,. June
Thank you for posting catchpole.
My mum is now stage 4 ovarian as it has spread to her liver and is very close to her bowel.
She starts weekly chemo next week. She is 74. I now just hope and pray. Take care xx
Hi Fernie,
I read your mail. I am very sorry to hear that you have been given such an advise. I disagree. How many patients he would have seen of Stage 4 ovarian of your specific type cancer cells of your specific type of physical strength and your specific type DNA? None...
Stage 4 doesn't mean it is end of your life. Its completely wrong. You have 15-20% of survival of 5 years.
Don't just give up by one Doctor's opinion.
I share my experience. My wife 42 diagnosed with uterine cancer May 2016 (Endometrial carcinoma ) stage 3B. It has staged that way because it has just passed the uterus and at the join point of cervix.
So she went through Hysterectomy , Full oophorectomy (removing both ovaries) and went through 3 months of intensive weekly cycles of chemo therapy and 28 days of radio therapy. so it went away.
she was be week but happy for 10 months and in August 2017 it came as a lump in her neck, severe stomach pain (under left ribs...where spleen exists) then doctors mis judged in emergency as Lymphadenopathy (swelling of lymphs for various reasons). After 2 months again went to GP and a biopsy identified as cancer is back stage 4 secondary. By then the lymph gland next to neck is of orange size.
I didn't give up. 2 weeks ago they did radio therapy to control the tumours (which exist in neck, chest cavity, stomach, small cysts in skull and lungs. Do you think I should give up?
Her Chemo treatment started today.Â
Carbo Platin and  liposomal doxorubicin (Specific medicine to stage 4 ovarian cancer).
Don't give up for your family sake.
I am an IT guy and since the relapse of cancer to my wife, we are all (me, wife, a son 18, a daughter 17) heart broken but we want her to be in the 15 % to live for 5 years. if not extend her life by another year. The life expectancy is 16 months to 24 months minimum for the rest 85%.
There is Immunotherapy available for stage 4 cancer in clinical trials, it will be effective if your cancer is of type "DNA Repair Deficient" type cancer tumour then your survival / life extension chances are 65%. There are clinical trials all over the world. Pembrolizumab (Keytruda injections)Â
http://ascopubs.org/doi/full/10.1200/JCO.2017.72.5952
https://clinicaltrials.gov/ct2/show/NCT02549209
I cant scale the chemo pain as I am not patient but my wife is coping with it pretty fine. On her first chemo last year she got 5 different reactions in first 30 seconds and the doctor has managed it by antidotes. Since then she is able to manage it..
I am reading articles like crazy research scholar all the time in internet just to find ways to extend life..
I am sure it is much more painful than period pain / Labour pain (I cannot comprehend that pain either as a man) but please don't give up and go to an oncologist to get your Chemo treatment started immediately..
If you change your mind I am glad.
My prayers with you.
Regards
charlie
Hi Fernie,
I have posted before a detailed reply for you to tell why you need to start chemo immediately.
See below article:
I have two secondary tumours - one in my spleen and one in my liver. I am on the ICON8B trial and after just one cycle of drugs, these tumours have ceased to give me any more pain or even discomfort. Perhaps they are in just the right spot to make best use of intravenous drugs, given that both the spleen and liver are extremely well served with blood vessels. My oncologist told me this week that she expects both of these tumours to be necrotic by the time I undergo surgery (spaying) in a few weeks' time, which is what I guessed all along. I know it can take several months for necrotic tumours to be reabsorbed by the body but if this process is taking place, they just show up on scans at getting smaller and 'fading away' (I used to work at the Royal Marsden and the consultants there can predict this process with a remarkable degree of accuracy with MRI scans and CT scans with contrast).
I wish I could say the same for my biopsy wound, though, which seems to be developing adhesions!
Dear catchpole, my mother is also struggling her stage 4 OC. She had her surgery because of spread in the entire abdomen. Can you please tell me if you have any idea of what type of hornonal treatment your friend had please? My mum has been hospitalised and is in icu. Thank you very much
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