Radiotherapy conundrum

Hi Christmas,

I was scared of scaring you. I always thought radiotherapy was 'nothing' until my husband had it! His Speech therapist told us 'never underestimate the power of radiotherapy'. I've heard that head and neck cancer is one of the hardest to cure, but one of the most successful. It involves eating, which is not good. He had an eating tube at various times in his treatment, as he was too sore to swallow. He has always been an optimistic person (too much so, at times,) but I think that helped.

After his first operation for the cancer he had a nose tube attached. He had given 75 pints of blood during his life and was awarded a meal, a cut glass dish and a badge. I wanted to cancel until the following year, but he wouldn't. We disguised the tube with make up, and although he couldn't eat food, took a bag to put in at lunch time in the car. I had to sit on my own, but enjoyed the meal. When the award bit began I went out to get him. We still have the photo receiving the award, complete with tube!!! He wouldn't let anything stop him.  The only thing he can't do is go in water, so no swimming. You just have to be prepared to change things if needs be, or do things slightly differently.

Believe it, or not he is one of the better patients at the support group we go to(mainly to help others these days) He has also been drawn into trialling different products for his stoma. Might help others in the future. Products are improving all the time.

I've just thought, my friends daughter is a radiologist, so I'll see if I can get her opinion on this. She probably never sees the end result, though.

Love xxxx 

Hi NannyAnny

it does sound scary and I’ve been very selective about what I passed on to my friend as she was considering the third option she was given which was to do nothing!

My mum had throat cancer many years ago and couldn’t eat afterwards. Your husband sounds like a very brave and lovely man. I can imagine how awful it was for you watching him go through that.

Now of course you have your own health to worry about too. Life can be so hard at times.

Thank you for offering to speak to your radiologist friend, any advice is useful.

take care of you and yours xxx

Hi Christmas,

I think treatment for throat cancer , and probably many others, has greatly improved since even my husband was treated 13 tears ago.

Personally, I don't worry about myself. The cancer has gone, end of!! I think experiences with my husband and daughter have both helped! I'll post if I get anymore information for you.

I don't think I would do nothing!!!!!! xxxx

HI Christmas2019,

So perhaps the question to ask is "What is the likely outcome if I do nothing?"  I know some women, particularly those who were  borderline on their stage or grade, were told it was better to leave RT as an option should they be unlucky enough to have a recurrence. You can generally only have RT once on a given area.   

Whatever she decides I hope she will have plenty of support from family and friends as well as her medical advisors. This forum will always give her a welcome! 

Hi oldlady

I didn’t know you can only have RT once and that explains why some ladies don’t have it right away. I will pass that on.

For myself I have or had grade 3 1a and am having lymph nodes removed in a couple of weeks time. Consultant says we will decide on further treatment when we have results.

It seems the norm to have RT for grade three but then what treatment is there for reoccurrence if you can’t have further RT! Am I right in thinking it would be chemotherapy? 
I can understand why it can be tempting to ‘do nothing’ but I guess our survival instinct kicks in to keep us going.

Christmas2019 : I was originally diagnosed, in July 2019, via a trans vaginal ultrasound, with 2 benign uterine polyps and a thickened endometrium. I had day surgery surgery in October  to remove them, and a biopsy,  but they only removed one completely and one partially. Two weeks later I was called in to see the cancer consultant and nurse and told the biopsy had revealed grade 3 cancer cells in the polyp and I would need a total hysterectomy. I was transferred to a London teaching hospital. I then had an MRI and a CT scan which found no more cancer. And my case was reviewed by the MDT at the new hospital. I was told that it was initially staged as 1a grade 3 and because grade 3 cancer was aggressive I would need a total.hysterectomy which was womb cervix ovaries fallopian tubes  and pelvic and para aortic lymph nodes. I am well past menopause BTW. 

The cancer nurse said my scans showed the polyp was not really connected to the myometrium and I might therefore not need more than brachytherapy afterwards for the vaginal Vault area. She did say, as did all the doctors, that I had to have the lymph nodes out because they would be at risk of attack by the grade 3 cancer otherwise. I had the operation in mid November by laparoscopy with uterus removed via the vagina. Just beforehand I asked the junior surgical team member who came to see me, if I really needed my lymph nodes removed out and she said yes because it was grade 3 cancer . She told me my surgeon was the very best and would be her choice if she had to have the same operation.it was all straightforward and there were no complications. I was told being slim and having no major gynae issues was a great help. The histology report found no other traces of cancer but the cancer itself was changed to clear cell. So the staging post op was 1a grade 3.

I then went to see the oncologist who recommended follow up as a preventative measure with 4 sessions of vaginal Vault brachytherapy over a 2 week period. I had it earlier this month. I went there and back on public transport.by myself no problem. Chief after effect so far has been spells of great fatigue. The oncologist  said VV brachytherapy was not to be confused with brachytherapy for cervical cancer which was a bigger deal..The actual sessions were only around 15 min each and the actual radiation dose even shorter. I requested and was given plenty of locsl anesthetic gel and it did not hurt. 

It was impressed on me that there would be some vaginal scarring. I was given a box  of dilators to  use post operation to prevent the scarring causing the Vagina to contract. and the nurse specialist told me to expect some grey discharge. I imagine if you were young with an active sex life this could all cause a problem but I am quite old. The oncologist said it would require perseverance and there might be short term bladder and bowel upset but not longer term. I start using them next week. 

.. 

Christmas 2019 :I asked my onologist.same questions about deferring radiotherapy. He said he very strongly recommended it as it reduced likelihood oc recurrence from 15%, to 5%. He said he had some other techniques in hand if there was a recurrence. 

Thanks Nightingale19

for taking the time to reply so fully. It seems we have a lot of similarities;  I am post menopause, grade 3 found in a large polyp (not sure if that’s serrous).

i had hysterectomy on 3 December but lymph nodes not removed as time over ran dealing with stage 4 endometriosis which they didn’t expect to find.

I see that other ladies who had hysterectomies the same time as me are starting RT now. But I’m having to wait for lymph node removal.

CSN said they’d be surprised if cancer has spread to nodes but I’m really worried about the delay in having RT. It seems to be considered quite urgent.

I suppose it was just bad luck and They have to give me time to recover from first op but the delay is scaring me.

I think I’ll have a meltdown if the second op is delayed or cancelled!

Hi Christmas,

I forgot to add the following. I was Grade 2 stage !A. They removed lymph nodes which were all clear. She said she would like to keep radiotherapy in reserve in case it was ever needed. That was two and half years ago now. At the time I remember asking if it was worth having the operation, and I got severely told off!!! I suppose they wouldn't do things if it wasn't worth it!!

Although the surgeon thought they had got all my husbands cancer (Stage 2, but 2 patches) they wanted a 'belt and braces' approach. In his case it was to 'make sure'. He had lymph nodes removed, too, which were clear. I think if the cancer is contained within something which they can remove they are more sure of stopping it. My older daughter had an ovarian cyst removed in her 20's, which was found to be cancerous in the middle, but because they could remove the whole thing, and the cancer was contained, she didn't need radiotherapy.  xxx

Hi Christmas 2019 just reading your post and think that the reason why RT is given seemingly quickly is because they are working to a protocol ? someone correct me if I am wrong. So as your operation was more complex and not straightforward they probably  needed to deal with the other damage that has been done from your endometriosis . Try not to panic, easier said than done I know, but they are always working in your best interests. Perhaps they needed to gather as much info before making a decision with their next move ? or they were worried about having you under a GA for so long ?  I hope that they are keeping you well informed, it sounds to me that you have had a traumatic time, I am so sorry. Take care of yourself. One day at a time.

Gentle hugs,

LC

xx