I got my biopsy results and my cancer has come back.
I had a hysterectomy end of March and was told everything was clear but had a bleed in November and they checked it out and here I am.
I have to have an mri to pin point exact location and size. Then the radiotherapy will start.
I’m just a bit shocked “again”
I was hoping for any advice on what to expect. Any tips on coping with after affects. I got some really wonderful advice before my hysterectomy so I thought I would ask here
Sorry to hear about your shock 'again', as you say. I had five weeks of external radiotherapy which finished last May. First you get a planning session, where you lie under a big machine and they ascertain exactly where the target area. Then they put little tattoos there.
You should already have your schedule of days and times of attendance. I was given a weeks worth of micro enemas which are wee tubes of gel that you squeeze into your anus like toothpaste. After a few minutes I needed to 'go'. I also drank three cups of water to fill my bladder. They want an empty bowel and a full bladder. So you need to be there an hour before your time. After the first week, it's only the water you take. it only takes 10-15 minutes for the radiotherapy to be done. You must remain very still.
It's not difficult to do, but the traveling might be a pain depending on your ease of travel. After a few weeks have gone by you get tiredness and maybe diarrhea. These effects last for a while after treatment. I know other ladies will come on with their experiences, I'm terrible for staying up late. I should join the Awake thread on the breast cancer forum!
Lots of love
Thank you Alison.
The travelling should be ok as I have not live about 20 minutes from the hospital where the treatment will be done.
The only thing the Doctor said was it would be 5 days per week for about 3 weeks and it might be internal and external but the team would let me know exactly.
I am meant to be going to Copenhagen on the 12th of March but the bowel and bladder issues that can start after is a bit of a concern. I may have to cancel because I don’t want to spending the time there worrying about finding toilets etc.
Thank you for that very comprehensive description of external radiotherapy. I found it easy to imagine and very helpful. I am also scheduled for para aortic lymph node radiation. Do you have any experience of that? I also heard that brachytherapy should be done ideally within 8 weeks of surgery and yet they seem mostly to do chemo first. Do you know anything about that? And my last question I'd like to throw out there for anyone and which I hope you won't think is stupid is - is it possible after radical hysterectomy to ever have an orgasm again?
Thanks to anyone who can answer any of this
I had my lymph nodes sterilised as the oncologist put it. Radiotherapy is targeted accurately on to a particular area. Chemotherapy ranges widely over the body killing off newly dividing cells, so to use it first catches the cells quickly, including the cells within the lymph nodes. Then the radiotherapy sterilises the nodes.
I didn't get brachytherapy, my tumour couldn't have been near the cervix end. The clitoris is not affected as far as I know, maybe somebody else can say. It works in me, he he!
You might be all right for a holiday, especially somewhere like Copenhagen. People take imodium for loose bowels, so you could be keeping it under control. You will probably be tired, but you could have a leisurely holiday. It would be nice to have a change of scenery and let you forget about blooming cancer for a while!
Re: orgasms. After my hysterectomy, I was scared to even try! A couple of attempts just seemed to get so far and then fizzle out. I was worried that as I didn't have a womb anymore to contract with orgasm would I even be able to achieve one at all. I was going to go and see someone, but had another attempt, and there it was! I even had some natural lubrication.
I can't quite belive I'm writing about this... haha.
It is possible. It may take longer, it may feel different. And it was such a relief. I even sent a text to my husband to celebrate.
All the best
Great news - thank you. I am not yet 6 weeks post op and everything in there still feels super scary but I have started doing pelvic floor exercises and thought it actually felt quite good so I am very encouraged.
I'm really sorry to hear your news. That must have been a horrible shock.
I've had loads of radiotherapy - 30 sessions over six weeks of external including to para aortic lymph nodes then two of internal brachytherapy and later five sessions of highly targeted SABR external to a recurrence in a para aortic lymph node.
I didn't have the micro enemas but otherwise my experience was pretty similar to Alison's. It was time consuming and tiring. Because they were zapping para aortic nodes near my stomach, I was given anti sickness drugs.
In my experience, the Radiographers were universally lovely and kind and compassionate and all did their best to make me feel as comfortable and safe as possible.
My top tips:
Drink plenty of water
Take a daily walk
Get lots of rest
Keep off the healthy food. White bread and Haagen Dazs ice cream did me fine
Keep Imodium/ loperamide to hand at all times
Get a Macmillan toilet card (they often have them at the radiotherapy units - you can flash them to get access to toilets)
Bring friends with you to your sessions and get some quality chatting in
Radiotherapy is not instant and it carries on working for 2-4 weeks after the zapping is over. Beyond that there is a recovery period. So expect to be fatigued for some weeks or maybe even months after it's all over and pace yourself. By all means go to Copenhagen but take it easy and do half what you'd normally expect to do. Build in a rest time into your schedule. And take plenty of Imodium with you. I had very heavy radiotherapy (every radiographer who looked at the schedule did that sucking in their breath thing) so I may not be representative. It was six months before I could get through the day without a nap and if I overdid things, it ended badly with a night clutching a bowl while sitting on the toilet.
Flamingo - I hope that this helps you too with your questions about radiotherapy to para aortic lymph nodes.
Do let me know if I can help with anything else.
Love and hugs xxx
What is a community champ?
I hope you ok, can’t imagine how you are feeling but send you love.
I had a full abdominal hysterectomy and also removal of appendix in March 2017. Following that I had 6 lots of chemotherapy, then 25 external radiotherapy & 2 internal radiotherapy (Brachytherapy) only finished treatment mid Nov.
The external radiotherapy is exactly as described by Alison, she is spot on. The mini enema isn’t fun but is supposed to help ensure you have an empty bowel..... of course make sure you are very close to a toilet when taking these.
The actual radiotherapy doesn’t hurt and you do have to keep still for about 10 / 15 minutes with a full bladder. They usually use an ultrasound scan to check that your bladder is full enough before starting treatment.
Once a week they usually scan you so that appointment takes a little longer.
I was ok for the first week but after that had diarrhoea for the rest of the treatment and after it had finished so needed to be careful what I ate. I was given loperamide which works wonders, it was provided by the radiotherapy nurse who said it’s exactly the same as Imodium but cheaper.
I got very good at locating toilets just in case they were needed.
I was also given a list of foods to avoid which helped.
Plain food is the best such as boiled potatoes, root vegetables, boiled white rice, white bread, chicken, lean meat. Try to avoid usual healthy options of loads of salad, brown bread, brown rice (A great diet lol)
I used Aveeno moisturiser during treatment, the nurse said that as its oat based it is a good choice and I had no problems which sore skin.
For me the internal radiotherapy was done in a different hospital with a specialist Brachytherapy nurse.
The first appointment took longer as I had an internal and an appropriate sized tube inserted (about the size of a large tampax) which attaches to a small connector on the bed. You have to stay as still as possible. They then scanned me to make sure everything is correctly positioned then wheel you back to the radiotherapy for the treatment which takes less than 5 minutes. The preparation is the longer part.
I had a day off then second treatment which is much quicker as they have sized everything on the first visit and marked my legs with a pen so the second treatment can be lined up easily and is quick.
The actual treatment doesn’t hurt but the preparation is very personal and can be awkward but it’s only for a short time and the nurses are lovely and explain everything.
According to your treatment you may be given a dilator to be used after treatment has finished to keep vagina flexible but only to be used when you are healed (only mentioned this as this was a surprise to me)
I hope this info helps and you have good results from your scan.
Wishing you well and sending you strength & all positive thoughts. xx
Lots of great advice there from the ladies. I had 25 fractions external pelvic radiation last Feb/March 17. I'd agree thatImmodium/loperamide works wonders. My consultant told me that if I was travelling/going out somewhere special/giving a presentation, then I could take it before a meal to slow down the transit of food. It helped me to feel more secure on such occasions. Obviously you can't do it all the time and please check with your team they're happy for you to do that on occasions. Also agree with drinking lots of water and avoiding caffeine where you can. Goood hydration also helps with the fatigue - pace yourself and rest lots as the fatigue is cumulative. I found it harder because I was still recovering from chemotherapy plus it was often 40minutes travel (minimum£ each way and you had to be there an hour before to drink the prescribed amount of water - being at hospital for 7.30am on a cold, dark February morning was not my idea of fun! Also, take a good book with you. Machines do break down occasionally which leads to delays. My worst day was being out of the house for 5 hours just for 10 minutes treatment .....I'd travelled in on public transport but was getting a lift home. The machine broke down, when we finally left it was slap in the middle of rush hour....I was so tired I sobbed my way home. The best days were being seen on time and being treated so well by a fantastic team of radiotherapists who did their best to make me feel relaxed and who seemed to care about how I felt and did their best to get me through with the minimum of side effects.
Another tips- My daughter suggested investing in some of this pad/pant combinations (Tena do them but lots of supermarkets do their own brand) "just in case." I was pleasantly surprised at how comfortable they were. They didnt show undear clothes and again helped me feel a little more secure.
Treatment continues working for 2-4 weeks afterwards so do pace yourself and if you've avoided certain foods during treatment then reintroduce them gradually, one at a time. 9 months on I'm still sensitive to high fat foods and some spicy foods but I eat a varied and hopefully healthy diet. I do have occasional wind and then I might need a toilet fairly quickly but otherwise I'm generally ok.
I hope all goes wel. Facing radiotherapy is a daunting prospect - count down the sessions each day and if your unit has an end of treatment bell, make sure you ring it loud and proud on the last day! x
One other thing. Here's a link to the Macmillan booklet on pelvic radiotherapy. I think it's useful to read these alongside the real life experiences of women.
I had surgery July 16. Chemo followed from Sept to Dec 16, then external radiotherapy from Feb to March 17. It was approx six weeks between chem finishing and radiotherapy starting. When I queried the timescale the doctors just said my body needed some healing time. During that 6 week break I had a post chemo ct scan which showed everything to be clear at that point (no evidence of disease) plus I had various consultations with the radiology oncology team specialising in gynae cancersand a planning scan to set up machines etc. I supect treatment times vary and differ in order given depending on how they feel we've responded to other interventions. Hope that helps a little x
I am hoping to be ok for my wee trip. It’s somwhere I have always wanted to go so fingers crossed
Thank you Fairycake that’s a fantastic reply so much information
Oh no I have to give up all the healthy stuff
I will bear in mind the Aveeno as I have sensitive skin and have to be careful.
I think there is a lot to take in but thank you for taking the time to reply
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