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New here and questions prob not going to go through with brachytherapy

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nothappy
New here and questions prob not going to go through with brachytherapy

So I was diagnosed finally after 5 years of being told I "just had bad periods" (welcome to canadian healthcare ha ha ha ha)

 

In the end it was stage 2b and the tumor was 10 centimetes by 11 centimeteres and hemmorgaging constantly so I've had over 60 blood transfusions.  (yep they left me like that LOL) 

 

Anyhow finally got a new doctor had a CT scan (cannot have MRI due to claustrophobia) and it was said it was just in the cervix and that I would have 25 radiation sessions adn then 3 HDR brachy and chemo. I basicaly refused chemo tried it once but it made my hair thin so nope no way ha ha, doctor thinks my response to externatial radiation is "fantastic" I only had 60mg of csplatin once I had no side effects from it other than the hair thing, couldnt even tell I had chemo, came home that day and cracked open a bottle of wine LOL. 

 

Now the brachy stuff from what I have read on this forum I thinking of NOT doing it. It seems very destructive to the body and I am not interested in having pain and worse weird stuff after the treatment I have had. I am now lactose intolerant, all of my stools float now and I have constant back pain and hip pain from the radition and my skin in teh creases of my buttocks is all red and inflamed and peeling and weeping 2 WEEKS AFTER external radiotherapy completed. I have had no bladder symptoms other than now I can pee again! (before the tumor was blocking my bladder) Sooo has anyone decided not to let them ruin you firther with the tortuous brachy business? how long can I be expected to live after? 

Also I do not want to consent to a catheter they aways cause me issues how they do brachy here as I was told is I go in at 6 am.. they knock me out for 4 hours and I wake up in recovery and can leave as soon as I can pee. Does this sound logical? what I have read here is people writhing in pain and crying and screaming (terrible to read for someone who already has PTSD from watching my husband die from brain cancer. I would rather honestly die than suffer. Any advice? 

I am not willing to accept further side effects or pain after so what would the people here advise? can I demand no catheter, smaller applicator ( I am a very very very small girl 100 pounds and very petite down there) can I only do one vs all 3 what have others done who are not very commited to the process?

 

Thanks!

Alice89
Alice89's picture

Honestly I personally would advise having the brachytherapy, I’m not sure what topics you have read on here but all the ones I have seen have been that it’s not as bad as people think it’s going to be. 

The brachytherapy I had was slightly different as I had a hysterectomy first so I didn’t get knocked out for it and it was over in 10 minutes, but they did size me up (lol) for the applicator. They do different sizes for it. 

Also RE side effects, brachytherapy side effects aren’t as bad as the side effects that you will have had from external beam radiotherapy. It’s a localised treatment and I had barely any side effects apart from a little spotting which went the next day. 

It’s obviously your personal choice though and I can understand your feelings after what happened to your husband but there’s just as many people surviving cancer now as there is not surviving. Maybe it would help if you talked about it with someone like a counsellor they might be able to give you an impartial view on the situation. 

Good luck with whatever you decide to do. 

Alice xx

emmz13

Hey lovely, 

i understand your concerns, and all people are different and react differently, and there is a lot of variation when it comes to brachy. 

My brachy involved going to theatre on Tuesday morning having the rods inserted and waking up about an hour later with everything in place and a catheter, I then spent till late Thursday flat on my back having 4 sessions of brachy and endless ct scans, it wasn’t a walk in the park but I got through it pretty good and today the day after I’m sat on a plane flying to Japan. 

My advice is like with the chemo at least try it if you can, it’s the cherry on the top with regard to treatment and will hopefully help kill any residual tumour. 

Theres lots of help and pain meds to get you through and if you’re out of it for pretty much the whole thing then it really may not be too stressful. 

I have a tiny bit of soreness but I think that’s just from the packing being in for 3 days straight, it’s not stopping me being completely myself again. 

I hope you make the best decision for yourself, massive hugs xxx

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

nothappy

So you were not in so much pain that you were all swollen and could not pee and even trying didnt reduce you to tears? I have read people say stuff like that on this forum it was enough to make me say no. Why do people post traumatic stuff ike that to people who are are already under huge amounts of duress with the medical system.

Philleepa

I completely understand your fear regarding the chemo but your hair thinning is likely only to be a temporary side effect and will start to grow back after treatment.

With regards to the brachy,  most posts that I have read are very positive.  My experience certainly was. The side effects of radiotherapy are cumulative but, again, after treatment they settle down.

I think your medical team are the only people who will be able to answer your questions properly

I know you feel they are 'ruining you're but in actual fact they are trying to heal you x

nothappy

I did the chemo once and glad I never did it again my liver enzymes flew off the chart. I have ONE Liver .. not interested in having that destroyed too.

haylesd

Hi normally,

Firstly I'm so sorry to hear you have been left so long like this.

It sounds like you have made your mind up and not wanting any treatment. If that's the case you need to discuss this with your consultant. Palative care would consist of different chemo and rads anyway. So If you want no treatment then you need to explain this. Although with the stage your at you have a damm good chance of being treated and living a long life. If depends on your circumstance, do you have anyone that depends on you and if you were not here how would those people manage?

 

  • 5th June 19 - smear
  • 15th July - High grade dyskaryosis/?invasive carcinoma 
  • 23rd July - colposcopy, LLETZ biopsy taken
  • 6th September - Met the consultant to discuss results. Stage 1A2 confirmed, unclear margins on biopsy. Unable to perform 2nd LLETZ due to alot of cervix being taken away on previous biopsy.
  • Hysterectomy booked for 15th October
  • Pre-op done 11th October, all good to go for next week!

Total Hysterectomy completed with ovarian conservation. Waiting for pathology report.

All clear - vault smear due in 6 months

May 2020 - Vault smear shows HPV positive, cytology clear but booked for another Colposcopy

emmz13

Hey nothappy, 

I guess what treatment you choose to have determines what outcome you hope to achieve. It’s not an easy road but I guess nor is the alternative. The first nurse I met who talked treatments with me asked if I was prepared to have it and my husband asked “oh ok what’s the alternative” and she said “you live out the rest of your life as well as you can”.

Everyone is different and unfortunately that’s the unknown factor, if the brachy that they are offering you in over in 4 hours then none of my side effects would affect you I suspect. The soreness is gone now, I was hungry coz they put you on super restricted diet so you don’t want to poo, and I’m tired but I suspect actually that’s from the travelling more than the brachy :)

I have read an awful lot of posts where people are anxious and worried but the mass majority of posts suggest that the reality is not too bad. 

I drank a lot of water during my brachy and tbh even the very first time I pee’d it was just like normal, I might have been incredibly lucky but I would do it again in a heart beat if it improved my chances of being cancer free. 

I can only encourage you to give it at least a go, as you may be surprised at how easily you can get through it. 

I wish you all the best, I’m here for any questions you may have, a lady called Rissag posted very recently about her brachy experience and it is very honest and helped me a lot prepare for mine. 

Much love to you xx 

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

WendyJE

I have just had my first session of Brachytherapy this week.  I live in Scotland and in my region they deliver it over two sessions, one week apart so not sure what the procedure is where you live.  I was obviously slightly nervous about it as not sure what exactly to expect however am taking every opportunity to tackle this disease head on.  I've this week completed my 11th chemotherapy and 25 external radiotherapy and other than the expected side effects have been fine. 

So the brachytherapy.... I was taken to theatre on wednesday morning and placed under g/a to have the rods and catheter inserted.  Taken back onto the ward after I'd woken up and then CT scan to ensure everything in the right place.  There was mild discomfort (just felt a bit nippy down below) however nothing that wasn't controlled with pain relief.  I was taken through to the brachytherapy suite around 4pm and stayed there throughout the night.  The nurses checked on me hourly and I can honestly say I never felt anything when the radiotherapy was being administered.  The removal of the 'equipment' took around 5 mins and yes was uncomfortable but was literally 5 mins.  Afterwards there was slight stinging when I pee'd the first couple of times but that passed by about the 3rd time and I've been fine since.  I'm due to return next week for the second round and am confident that it will be as straighforward.  Hope this helps to shed a more positive light on the procedure.

No missed or abnormal smears. Odd symptoms started in April 19.

Diagnosed with Adenocarcinoma 2b with one lymph node involved on 1/7/19.

Started 11 weeks of chemo on 15/7/19.

Started 25 external radiotherapy on 26/8/19.

2 brachytherapy and end of treatment on 6/10/19. 

 

nm_353
nm_353's picture

Look most of us in this forum have all been there and scared. The radiation is mostly what’s important though the chemo should take care of anything microscopic that is too small to be picked up on scans. You’re sort of playing a wild card for not getting it, but that’s a personal decision to make and I respect that. I cried my first day of brachy, and then felt silly later for being so scared. I had 6 of them. No problem! Please don’t skip those too. Don’t let fear keep you from getting all of the help that you can to beat this. Goodluck hun. 

June 2016- pap, not up to date, results abnormal

Julyy 5th-  After followups diagnosed with Adenocarcinoma

July 12th 2016- Met with oncologist, clinically staged at 1b2, staging confirmed with MRI and PET. Tumor is endocervical and approx 7 cm.

August 2016- Started chemorads. Post followup after treatment, NED

Sept 2018- Still NED

Petesdragon
Petesdragon's picture

I didn't want radiotherapy at all when I had cancer in 1997 due to concerns about side effects. However my very patient oncologist spent a long time drawing graphs and curves and explaining risks versus dosage etc. I was unlikely to survive without it. 

I went on to survive 22 years so far! Admittedly my fears about radiation came to pass and I ended up with a radiation induced tumour for which I needed total pelvic exenteration.

If you don't have the recommended treatment and the cancer is still there you could also need total pelvic exenteration but within months rather than after  many years. It is really harsh to say this but I am being honest. TPE is a thousand times worse that radiotherapy. 

I think you need to go back and discuss it again taking a close friend with you. All the ladies that have answered your question have got through it just fine. They shared much the same fears. They did it, and so can you!!

Love Karen x 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Mariewendy79
Mariewendy79's picture

As far as I understood with the brachy it’s a lot less damaging to the external radiotherapy you’ve already had. With brachy they can hit tumour exactly where it is without touching any other organs. External is zapped over a bigger area, so if your worried about damage then don’t it’s much safer xx

Tivoli
Tivoli's picture

Hello nothappy :-)

I can quite understand why, given the experiences you have already had, you are backing away from another treatment. However, I have never heard of people "writhing in pain and crying and screaming" in relation to brachy. A little uncomfortable perhaps, but nothing like what a dental hygienist does. It didn't bother me at all. I've cried more when stubbing a toe.

Be lucky :-)
Tivoli

Izzzy76

I’ve had my first overnight brachy one week ago and there was no screaming in agony involved at all. I didn’t even have to use the morphine pump. It was uncomfortable but no where near agony. Had the whole unit removed after 26 hours without any pain killers at all. Again, uncomfortable but not horrible. I was so scared of brachy that I tried bargaining my way out of it. Thank goodness I didn’t. Tomorow I Will have my second and last 26 hour brachy. Not looking forward to it but definetly not as scared as I was last week. 

 

Had no side effects whatsoever either. 

 

28-8-2019 diagnosed grade 2 squamous 2B 4 cm tumor Mri suspect lymphe nodes but pet scan Shows no lymph nodes 25 radio extended field, 6 chemo and 4 brachy finished October 29 2019
slicknic

I've always had trouble with catheters too, usually getting UTIs after having one. But I had 4 rounds of brachytherapy with no issues. I was pretty terrified of the whole process but it really wasn't that bad. When I would wake up in recovery with the rods in I always asked for extra pain meds. After the whole thing was over I would be able to eat a normal meal (the only time during my treatment I really ate).  I would sleep off the meds in the afternoon and be fine the next day (well, as fine as you are during treatment). It's uncomfortable to have the rods pulled out for sure, but I never cried. And this is from someone who cries when anyone takes too long getting a needle in a vein. Hopefully this helps you make your decision. 

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Treatments for cervical cancer