Treatment dilemma

Hi Samanthi,

I am just very pleased I wasn't left to make any decisions about treatment. 

My husband had external radiotherapy on his throat area for throat cancer, and after a year it was clear he was not right. He couldn't eat without coughing, so a year later they decided that his larynx had been too badly damaged by the radiotherapy, and removed that. It took his neck another two years to heal up from the operation. They said it was poor healing due to the effects of the radiotherapy. The treatment worked as that was 14 years ago now, but it was a tough 3 years.

Bear in mind treatment has probably improved in those 14 years. Good luck with your decision. xxxx 

I am in a very similar dilemma, I posted only yesterday under 'treatment and diagnosis' with the heading  'MY DILEMMA' I have had same  'all clear ' as you but been offered Chemotherapy to try and prevent recurrence. It's so hard to decide when you hear of all the possible side effects. If I had been told it's necessary and this is what we are going to do , I wouldn't have questioned it under the reasoning that they know best, but to throw it out there that it's my decision to make makes me really uncomfortable., I know this is no help to you right now, but i wanted to let you know your not alone. ( In my case  I don't ever recall hearing this type of treatment is patient choice ) but for you it sounds more like choosing one necessary evil over the other.I know we all have the right to Refuse a treatment, and I admit for what it's worth your choice at this moment in time sound sensible to me in my humble opinion.But only you can decide what you think is best for you in your situation. ( that's what I keep getting told LOL )

I wish you all the best for you recovery Take Care x

HI Samanthi

After surgery I was staged as 1a Grade 2 with LVSI.  (no lymph nodes removed) . I was recommended to have 5 weeks of External RT followed by 2 brachy.  I must admit I was relieved that Chemo was not suggested.   My oncologist was not as pessimistic as your concerning side effects; only talking about the "possibility" of long term bowel and bladder issues. . She didn't even mention  Lymphedema at all until I brought the subject up .  She said that the use of IMRT (intensity modulated RT)  reduced the damage to surrounding organs. Once my treatment was over ,it took a few months before I felt back to normal and I have had no problems since then.  However,  I know that the radiation dosage and area treated can very from patient to patient so wonder if your oncologist feels your treatment  may put you at greater at risk.  Perhaps your CNS could tell you a bit more.  

Sometimes it is not so good to have a choice rather than a specific recommendation!   

Hi Samanthi. I was told after my surgery I was now cancer free and wouldn't need further treatment. I'd been re-graded from Stage 1a, grade 1 to stage 1B grade 3 serous. 6 Nodes dissected - Lymph Node = 0, LVSI negative. The 4 CM tumour had been removed however some malignant cell had been found in the peritoneal wash so I was advised as a "belt and braces" approach to prevent recurrence to have 3 x Brachytherapy sessions. 

I do experience vaginal dryness and have to use dilators weekly to maintain suppleness of vagina. Sex for me is a distant memory so nor real problems there. I've no urinary problems but do suffer occasional bouts of diarrhoea for which I keep a stock of Immodium close. 

I try to evaluate why other ladies with seeming the same histology results as me have had chemotherapy, radiotherapy and Brachytherapy. Sometimes they've had LVSI (LymphoVasular Space Invasion which would make sense) I suppose also it's where the tumour was found.

If I get recurrence (fingers crossed I don't) I'll have to go down the Chemo / external Radiotherapy route as Brachytherapy sessions can only been done once.

I've read mixed "reviews" here but I put my trust in the Experts. It is scary though when your radiologist gives the most frightening worse case scenario!

Sending you hugs, Barb xx

Hi Anne, I have been graded 1A grade 2 with LVSI so the same as you. I had a CT scan this morning and I have an appointment at the Christie hospital on the 7th September with the sarcoma consultant. I am expecting to be told that I need further treatment. A friend of ours had bowel cancer about 12 years ago and had surgery then told he needed radiotherapy and chemotherapy. He read up on the side effects and decided not to have either. He was told that he would be dead within the year. He is still with us and at age 80 he is in good health.

I was diagnosed with stage 1a grade 3 cancer in a polyp at the top of my womb in September 2019. I had a full hysterectomy in November 2019 which included removal of womb, ovaries, fallopian tubes and, because it was a grade 3 (clear cell) cancer, my pelvic and para aortic lymph nodes. The post op tests results showed no cancer. Apparently if it had been a grade 1 cancer I would not have needed any further treatment.

However because it was Grade 3 cancer, I was referred to the oncologist. He said treatment was optional because post ops tests showed all the cancer had been removed - there was nothing else found besides the cancerous polyp.  However because clear cell is quite aggressive, he recommended a short course of brachytherapy to reduce the odds of reoccurrence at the vaginal.cuff from 15 to 5 %. I had 4 "doses" over two weeks about 8 weeks after the operation. Oncologist said he did not feel chemotherapy or further radiotherapy was currently indicated. He said there should be no side effects.from the brachytherapy.

I felt very tired for several montbs afterwards and  TBH I do find myself getting up in the night to go the loo to urinate which I did not before. I have a follow up check every three months and a full CT scan with dye every 6 months. The last was in February and all clear. Due another shortly.

Different consultants do seem to have different policies.