Hi ladies, I’ve met w my radiologist yesterday as to what’s the potential treatment plan after the surgery to assess if there’s spread on my bladder/rectum and to put stent on my left ureter and also to take sample of nodes. He said even if the pelvic nodes are negative of cancer that he will still include it on the radiation treatment to avoid recurrence or spread there is this really the protocol? He also said even if there’s a spread in bladder or rectum that the main treatment is still radiation on those areas. I thought it would be chemo first if there’s a spread. I just thought that if there’s no lymph nodes involvement that it will only target the tumor area. I’m worried that the bigger the scope of radiation comes worst side effects. Any input please? By the way I’m from the US. He also mentioned about brachytherapy 4-5 sessions which he said minimum is 4 which I’ll be hospitalized for like 2 days to get the 4 sessions. I was wondering why it has to be that much internal radiation where I see you ladies only have 2-3. My tumor is 3.4 cm on scans. Thank you.
the chemo you are most likely a low dos of cisplatin. the reason for this chemo is to Weaken the cancer cells , Radiation has proven 1to be more effective when chemo is administered
The number of Radio treatments is notbased on the size of the tumor. they will spread themaximum close of radiation you can take over a number of sessions. they simply can not do this in one session, it would will you.
Same for brachy,this is absolutely daunting but your chances of survival increase by adding brachy in the mix. it is u sessions over 2 days, they can not do this in one go without causing mayoror even lethal damage.
Hi May17
Treatment plans are partly based on science but are also subject to medical opinion. It might be worth considering a second opinion if you don’t have full confidence in your medics. Of course, if the second opinion differs that gives you the dilemma of deciding which treatment plan to to go with.
My first surgery was a lymphadenectomy which revealed I was node negative. My tumour was initially assessed as stage 1b2 (new Figo) measuring 3.8cm and I was advised that there was a good chance a radical hysterectomy would cure me, so there was no plan for chemo-radiotherapy prior to surgery. As things turned out my post op histology revealed LVSI, PNI and a close margin (restaged to 2A) so I subsequently had chemo-radiotherapy. I recall the oncologist saying she would include the area of my pelvic lymph nodes for radiotherapy - just in case a node had been missed.
I only had two short (15 minutes approx) sessions of brachytherapy; I always assumed that was because by that time I had no uterus or cervix and only half a vagina!
My cancer was grade 2 (moderately differentiated); do you know what yours is? Maybe that influences the treatment plan?
I’m in the UK
x
Hi May,
I am 5 weeks post treatment, I didn’t have lymph node involvement my 4cm tumour was high up in the cervical canal. I had chemo and 25 radiotherapy and 3 brachytherapy.
They targeted the tumour every day and once a week I had a longer session where they targeted the whole pelvis. The brachytherapy was 3 sessions one session the first week and 2 sessions the following week the 2 sessions required overnight hospital stay.
I had very little side effects even though they were treating the whole pelvis.
Take care x
Hi Jazza, my tumor is 3.4cm on scans but it’s on my left side that’s causing my left ureter to be partially blocked. Mine is also moderately differentiated squamous cell. Grade 2. I also suffer w left sided pain in months now. Left sided pelvic pain and lower back pain that I need to take pain killers everyday. They will do a laparoscopic surgery on Wed to put the stent in and assess if it has spread to the bladder/rectum as they will also do a sigmoidoscopy. I fear that the stent will bring me more discomfort as physically I’m not doing so well w the pain everyday. I hope I’ll still be able to do the treatments. I’m not sure why my body just feel so weak. Thank you for taking the time to reply and for all the info. Xx
Hi AMF, I’m glad you’re finally over treatments and so happy that you didn’t suffer much. I’m already in pain everyday and my body seems to be weak. I’m worried about undergoing treatment at this condition. Altho I’m only 37 I’ve lost weight from 120 lbs to now only 97. I hope I could carry on. I’m just too worried that my body couldn’t handle that much radiation as he said he’ll be doing 28 external plus 4-5 brachytherapy and that he mentioned after the surgery even there’s no lymph involvement that it will be targeted as well. I also have this watery discharge sometimes mixed w blood aside from the pain, would these symptoms go away during/ after treatment? Thank you for the info and praying for your continuous healing. Lots of love.xx
Thanks for the info Izzy. My mind is all over the place as I’m worried what they would find during the surgery. If it has spread to bladder or rectum I know it will put me to stage 4. I’m not feeling well physically and I know I have to be strong but dealing w the pain I guess my body is just taking a beating right now. More so when treatment starts. I wish there’s still hope. Xx
May, so sorry to hear you’re having such an awful time already. Don’t worry - you will be monitored carefully all the way through. Your health and wellbeing is paramount - they want to kill the cancer but not you! If you’re already losing weight this sounds like it’s due in part to the pain. You need this sorted. If there is involvement of other organs after your full investigation they may need to regrade your CC. The important thing, as Jazza says, is to treat you enough but in doses that your body can cope with. You will have regular blood tests (at least every week during treatment) for iron levels and kidney and liver function. The treatment isn’t nice, but cancer is not nice - like any parasite it will hold on and try to spread. It must be stopped, removed, and destroyed - and the aim is to do this in ‘one go’ rather than find at the end of your treatment that it hasn’t been complete. If you’ve lost a lot of weight (not unusual with cancer) and are worried, please talk to your consultant and your nurse specialist - you should have been given one. Let them know your concerns, get them to take time explaining how they will protect your health and wellbeing through the treatment. It’s important you are able to come to this with confidence in your health care professionals, and it feels like at the moment you’re not getting this. Xx
Thank you Jacks. Being in this forum gives me a sense of comfort. Especially talking to you ladies that has made it through the treatment which I’m dreading so much after they were talking about all the side effects. But I think thinking ahead is not helpful. I should take one step at a time and survive each step. For some reason my body feels weak probably cuz I’ve been dealing w the pain for months now. I’ve only been diagnosed more than a week ago. After the surgery, I think it will be the planning as to how the treatment will go. The nurse said they will give me some narcotic pain killer if I need it cuz for now I’m only allowed to take Tylenol/paracetamol until surgery. I just really wanted to be comfortable enough cuz I know the treatment is gonna be even tougher it’ll be Nice to not be in pain. Thank you again for all your input. I feel like I’m not alone. Xx
May, you’ve lost a lot of weight which could be part of the reason why you are feeling weak. I second what Jacks suggests about talking to your medical team regarding your weight. I went underweight during my treatment and a dietician prescribed me with high calorie nutritional drinks which helped a lot to get me through.
x
Thank you Jazza. After my surgery I will talk to them about those high caloric drink as I’ve also lost my appetite. Please tell me it gets better and the pain/symptoms go away during or after treatment. I’m always terrified that the treatment will just torture me more but had no choice but to do it for a chance to be cured. Xx
Hi May
I was thinking that if you’re underweight for your height it would be worth asking your medical team about help e.g. nutritional drinks sooner than later. Being as strong as possible will help you get through your surgery. I don’t want to give you extra pressure - just a suggestion; I can empathise about losing appetite and weight.
I can only imagine how difficult it must be for you at the moment with your pain. My only symptoms were persistent discharge and bleeding which disappeared immediately after my hysterectomy.
I didn’t have much pain after either of my surgerys. Neither did I get any pain during my chemo-radiotherapy unless you count a sore bottom from all the diarrhoea I had - but lots of tlc and Vaseline dealt with that. From what I’ve read, once the chemo-radiotherapy has sufficiently shrunk the tumour it will no longer be pressing on nerves and the pain should resolve. Of course the treatment comes with challenges and some find it easier than others. I didn’t have an easy time but it wasn’t torture. You will be closely monitored throughout to check your body is coping and there is scope for treatment to be modified should the need arise.
The thought of treatment is daunting; it’s a relief once it starts.
x
Hi Jazza, I’m 8 days post op and will be starting treatment on Monday. My oncologist/surgeon wasn’t able to put the stent on my left ureter he said it was stuck cuz the tumor was firm on that side and the only other option was to put a tube on my kidney which he thinks will cause me even more discomfort and pain. So my team was hoping after 1-2 weeks of chemorads the tumor will shrink enough to free my left ureter and help w kidney flow. I am terrified but hoping for the best outcome. Thank you so much for all of you ladies here for your support and advice since my diagnosis. I’m really hoping as the treatment goes the pain will decrease. Sending much love. Xx
Dear May,
Thanks for updating us. Thank goodness you’re starting your treatment on Monday, and we are all with you in hoping that the treatment will start to shrink the tumour immediately and release your ureter. It must be so painful. These treatments are highly effective and there’s no reason to believe it won’t be successful. Three days and counting until you can start to rid your body of this horrible disease. Please keep us updated. X
Hi ladies. Just checking in again and to update you guys about my first week of radiation. As you know they try to immediately start my radiation therapy hoping it will help shrink the tumour so it would hopefully release my ureter. The radiation was painless and no side effects so far aside from feeling a bit tired afterwards but this could also be because of my pain meds. I will be starting chemo on Monday so quite nervous about it. Any preparation, tips and what to expect for the first chemo? Thank you and sending lots of love and continuous healing to everyone. xx
Hi May
I’m assuming you will be having Cisplatin for your chemo treatment? My main memory of chemo days is weeing a lot; the drug can be harsh on the kidneys so you have lots of hydration (IV and oral) before and after it’s administered. My chemo days were quite long and included a radiotherapy session; I had to be on the day unit by 8.30am and quite often didn’t get away until after 5pm, so you might want to think how you’re going to keep yourself entertained e.g. a book to read or whatever takes your fancy. I’m a bit of a chatterbox and luckily I was sat next to some friendly patients on a few occasions, which helped make the time pass. You might also want to take something to eat; my day unit did provide lunch but it wasn’t great so thereafter I sorted out my own food - I developed a bit of a thing for BLT sandwiches for my first 2 or 3 sessions - funny that as I’m almost vegetarian.
Wishing you all the best for tomorrow
xx
Hi Jazza, thank you for the tips. Wow I didn’t realized it would take that long for chemo days and yes it would be cisplatin. Which I also kinda wondered as to why I’m given cisplatin instead of the cocktail ones which I see some of the ladies here who are stage 3b like me were given. I guess it’s different case to case. Jack also explained to me about as to why others received different treatment. Bit of a background my tumour is squamous cell, grade 2 , measuring 3.5 cm in diameter which slightly involves left parametrium and unfortunately partially blocking my left ureter causing me left pelvic and left lower back pain to which my oncologist was hoping after a few weeks of treatment they’ll be able to shrink the tumour and released my ureter. Also I don’t know if anyone of you have experienced this but since I started radiation, I seemed to have this period like pain and pink or reddish watery discharge along w it. I hope this ain’t something bad. I just wanna say thank you all for support and making me feel that I’m not alone xx
Some really helpful tips from Jazza that I would agree with entirely. One thing I would add is that I would get really cold with all the cold water they pump into you for an hour before the chemo. I went along without anything to keep me warm and I was shivering, even with the blanket they give you. Take some reading matter, something warm, some music and anything to take your mind off what’s happening. Over time I started getting the shakes - legs particularly - after treatment, but to be honest it wasn’t that bad at the time. Will be thinking of you tomorrow. Xx
Sorry to jump on I have a question, I’ve been told u need to use an emema before every radiotherapy is that accurate? Xx
They do like you to ‘empty your bowels’ before each radiotherapy treatment. The process is generally enema, which for us was a small tube of gel to you-know-what, followed by drinking to expand your bladder. What they want is to get your internal organs in the pelvis, including the bladder and bowel, to be in the same place as they were before you had your tattoos and the planning scan. You would have been given an enema before this, and asked to drink a certain amount of water. HOWEVER, if you start to find you get diarrhoea with the radiotherapy you will not need the enema! As long as you’ve emptied your bowels very recently they will be happy. I think I used the enema for up to 4 weeks, then abandoned them as they would have a dire effect…. Having a full bowel can exacerbate the effects of the radiotherapy as well. When you are on the radiotherapy table the first thing they will do is an ultrasound of the bladder, to make sure it’s within certain parameters, then line up your tattoos with the machine lasers (green lights) and the third thing is that the machine will scan you to make sure your organs are in the right place…
In actual fact I couldn’t fill my bladder for my final radiotherapy as it was after brachytherapy and I couldn’t hold my pee - they then acknowledged my internal organs didn’t seem to move around regardless of my bladder, so they did me with an empty bladder for my final go… x
