Stage 3 Cervical Cancer

Hello all,

I have been lurking on these boards as I have been going through being diagnosed with cervical cancer. It hasn't even been a full month since my diagnosis, but it has been a very long few weeks.

I was initially staged at 1B2. My doctors were pretty confident that a radical hysterectomy would be the treatment plan. After my PET and MRI came back, however, due to the tumor growing into my pelvic wall and a lymphnode possibly being involved(They are not sure and stated it would be really hard to biopsy considering it's size), they restaged me to stage 3. Now my treatment plan is 6 rounds of chemo concurrent with 25 rounds of external radiation and 2-3 rounds of brachytherapy/internal radiation.

 

I came with a couple of questions. Any thoughts or shared experiences will be mcuh appreciated!

 

- How was recovery from ovary transposition?

 

- What side effects have you experienced with chemoradiation?

 

     My doctor's seem to think that I will have minimal side effects with chemoradiation. They mentioned some diarhea and vaginal dryness/possible shrinking. They stated that I shouldn't feel too nauseated from the chemo an I shouldn't lose my hair. I imagine it being much worse than they seemed to be concerned with.

 

-For those of you diagnosed at stage 3, how is/was your treatment and how is your post treatment going?

 

Thank you in advance. I am happy to have somewhere to post about this new "experience".

Hi Ivy

I am wishing you all the best with your treatment. I was diagnosed with stage 2B but the treatment plan seems similar to yours. I had 6 cisplatin, 28 rads and 3 brachy. Regarding you side effects during treatment are not too bad especially the first 2 weeks, the 3rd week I experience nausea, and severe diarrhoea which lasted until the end of treatment however I managed it with medication and with diet. Also I felt very tired Every task seemed very hard for me especially at the end of the treatment. Regarding the brachy depends on the type you will have for me it was tough but I was repeated to myself that it is only 3 days of my life and I will not experience it again. 
regarding your first question I am also very interesting to know if there are at her women that had their ovaries transposition because when I went to fertility clinic they didn't give me the option. One of their arguments were that chemo impacts the ovaries. 

I am truly wish you all the best for your treatment and I am sure you will get through this!!

Maria xx

 

Hi ivy,

 

How are you getting on? 

I guess you have started treatment now?

Everyone reacts differently to the treatment and has different experiences. 

For me I was lucky and had a relatively good experience. 

I have written quite a lot on this forum. Feel free to have a read.

 

H

 

I too was 3c1. I'm a year NED today. I had the same treatment plan as you.

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Hi Ivy

I’m due to start my treatment plan on the 21st and it sounds basically identical to yours and Maria’s. I’m assuming you’ve started (or possibly even finished!) by now. How are you doing?

I too was quite surprised by the side effects appear to be ‘minimal’, as when I heard Chemo my mind automatically jumped to the worst.

Maria, it’s great to hear that your side effects seem to be largely what they tell us to expect, as I’m getting more and more nervous the closer my start date gets.

Regarding the Brachy - did anyone get told that they need to distance from small children following treatment? My husband read about this on the MacMillan site, but it’s not something that’s been mentioned to me at all. I have an autistic 6 year old at home, so if it is a thing, that’s going to be tricky to manage.

Wishing everyone the best.

Tisha

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Hello!

I apologize for not replying to the thread sooner. I didn’t realize I had gotten responses!

I ended up getting the ovary transposition. I don’t know how common it is… I had my surgery done at a relatively well known cancer hospital in the US and some of my OR nurses didn’t even know what the surgery was. The surgery wasn’t too bad, a few days of having trouble getting up and down from the couch/bed, about 2 weeks of general abdomen soreness but nothing too awful. Im hoping it does what it’s intended and keeps me out of menopause. :crossed_fingers:

I have completed 15 out of my 25 external radiation and 3 of my 6 chemotherapy sessions as well. I am tolerating treatment very well. It isn’t an easy nor fun road, but it has been very doable. The doctors attribute me doing well somewhat to my age (31).

My biggest issues thus far has been digestive/diarrhea and energy .
Basically as soon as I started treatment I completely lost my appetite. I still eat fine and haven’t lost any weight but nothing sounds appetizing.
I get occasional nausea, but it’s been completely manageable. I usually can take an alkaseltzer and carry on fine but if I need it, my doctor did prescribe me Zofran, which I’ve only taken 3 times so far.
Apologies for TMI but I feel like I haven’t pooped normally since I started treatment. I’ve only had true diarrhea 3-4 days and it was manageable with Imodium, but my gut never quiet feels settled or happy. It’s not unbearable, but if you’re starting treatment, just make sure to get the medications to manage it. I’d also recommend buying a good greek yogurt- it seems to be helping as well. My doctor says that this is a temporary side effect that should ease up after treatment so I’m hoping that’s the case!
My energy levels have been pretty bad though. I am an active person who not long ago was running half marathons and doing obstacle course racing but as soon as I started treatment my energy completely crashed. My doctors have said it’s to be expected. At night I sleep about 10 hours, I wake up and can usually do one activity(shower, water my garden) and then my energy levels crash and I lay down for a bit. I get up and go to my daily treatment but then lose energy again by the time I’m home. I’ll rest for a bit and get up and do one more activity, usually a 30-45 minute walk, and that’s about it. Im sure my lack of appetite/eating can be associated with some of my energy level issues.

I still have 10 more external radiation, 3 chemo and the 5 brachytherapy. Slowly but surely I’ll get there.

Everyone is different, but I will say that for me, treatment has not been as bad as I had pictured/dreaded in the weeks leading up to it. I am not at all minimizing that this is not an easy road. It takes strength and a positive mindset, but you can do it.

If anyone wants to reach out to me with any questions about any of my experience or treatment, please do not hesitate to send me a private message. I know the road isn’t a fun one and staring down the idea of treatment is terrifying. Please reach out, I am happy to chat. :slight_smile:

I’ll update this when I’ve completed my treatment, which will be 6/30. :heart:

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Hi Tisha

I hope all the best for your treatment. Regarding brachy, even though I don’t have children, I asked if I need to distance myself from my partner due to radiation but they told me that it doesn’t work like that and i don’t need to distance myself.

So hopefully it might be the same for you.

Don’t worry too much on the treatment the first day is the most difficult one because you don’t know what to expect :slight_smile: you got this!

Wish you all the best!
Maria xxx

@Maria87 & @IvyGardener

Thank you so much for replying! I had my CT planning scan today, and that should be my last scan before treatment starts on 21st.

Ivy thank you for being so honest, and definitely not TMI… I feel like the more I know, the better prepared I can be. Ive been suffering with anxiety related nausea for weeks now, so I’m pretty prepared for that to get worse. I totally get the appetite thing too. I’m tolerating food, and keeping most of it down, but nothing appeals ( even chocolate, which has to be a first for me ).

My MDT have warned me about the diarrhoea, but bless you, that sounds hard. Glad the Greek yoghurt is something that seems to be helping. Hopefully as you say it will ease up after treatment.

I’m really worried about the energy levels. I’m not a health nut by any means, but I’m used to chasing around a hyper 6 year old boy, and I’m not at all sure how he will cope with mummy being in bed most of the time. I have to keep reminding myself it’s only temporary, and I’m doing this so that I can get back to being fun mum afterwards. I’m 35, so hopefully my age will work to my advantage too.

I really hope the rest of your treatment goes well. The Brachytherapy is terrifying me, but at least we won’t know it’s happening :joy:

Maria, thanks for the info. I did ask the nurse in the end, and she said that this type doesn’t need distancing (apparently there’s a different type that does, so very grateful I’m not having that). I’m so nervous about the chemo, but I know you’re right, it’s more just not knowing what to expect. Hopefully it will get easier.

I’m really glad I found this forum. I find it really difficult to discuss this stuff with people who’ve not been through it, partly because of where it is (the phrase ‘down there’ is my constant companion :joy:) and partly because the treatments seem to be so unique to cervical cancer, so I find myself having to explain them to people over and over. It’s nice to be in a place where people just get it.

Best of wishes to you, and I hope everything goes well. X

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@Tkd1985
Oh nice! You’ve gotten step 1 down. Did they tell you at that appointment if you will need to have a full bladder for your radiation treatments? Drinking that water before the appointment has grown to be a frustration of that process!

Ugh, sorry you have nausea already! My chemo doctor made sure to get me nausea meds before I even started treatment so I would definitely get yours as soon as you can! My chemo dr said that the nausea meds can back you up, so use stool softeners as needed. I haven’t had that issue but definitely arm yourself so you have what you need on hand!

I just started getting more detailed information for my brachytherapy and I’m getting a bit more nervous as it comes, but I’m hoping it’s just uncomfortable and not miserable! Have they told you how many you have?
For my brachy, they were very specific that I can be around people after the brachytherapy is done so unless your treatment for it is somehow vastly different, you should have no issues being around your son/people
Energy levels will be low… it seems like that’s one part that hits everyone from what I’ve read… If you’re lucky youll get bursts of feeling good, but you’ll definitely want to go easy on yourself and rest when your body wants to. With an energetic 6 year old it may be hard sometimes, hopefully you can manage your days to work out the timing most days.

I agree that having people that understand helps! I’ve literally had to draw pictures for people to explain some stuff! That’s funny too, my “code word” I’ve used for people I’m less comfortable with is “reproductive area”. My poor family has heard more about my vagina and poop than I ever thought I’d share… lol

@IvyGardener

That made me laugh! I really hate talking about this stuff, always have, so when people are asking I get all tongue tied and embarrassed. I think all the bowel and vagina talk may have put my husband off me for life :joy:

Oh god the water! I had to drink 600 ml of water in 15 minutes for my scan yesterday. I usually drink about 2.5 litres a day, so I thought it would be easy, but it really wasn’t! And the CT scan room was freezing, which made me shiver so hard I thought I was going to wet myself :joy:. They ended up covering me in blankets or they wouldn’t have been able to do the scan :see_no_evil:

They’ve told me the treatment room is much warmer though, so at least that’s a bonus, but yes I imagine the drinking will get old fast. They’ve said that keeping up with the water intake should really help with the side effects though, so I’m making sure to drink at least the 2.5 each day.

I’m very lucky that my husband is able to take all my treatment time off work, so he’s able to take over the bulk of child care. I’m not sure who’s going to be more tired at the end of this!

Thanks for the advice on the nausea. I’ll definitely talk to the nurse today, and see if I can sort something out. I hate dry heaving, it’s almost worse than actually being sick, as you get no release. With any luck the medication they give me should stop both in the most part.

I’m having 3 or 4 of the brachytherapy treatments over 2 days 1 week apart. I’ve been told I may have to stay in, but I’m shutting it out of my brain for now, and just focusing on getting to and past the first stages of treatment. One day at a time as hubby says. I’ve marked the days on my calendar to cross off with my son, and I have to say, I’m really looking forward to crossing off that first day.

I’m having 28 of the radiotherapy treatments Monday-Friday each week, with chemo alongside the radio on a Monday. It sounds really gruelling, but I’m glad that means it will be over relatively soon. In fact, my final day is due to be 30th June too, which is also my sons 7th birthday. I can’t decide if that’s a really good or really crappy present.

I really hope that the brachytherapy goes well for you. Just remember that you’ll be unaware of it happening (assuming that you are having anaesthetic/ heavy sedation which is what I’ve been told.) It’s all worth it in the end to beat this thing. X x

Hi Ivy and Tish - thank you for sharing your stories! I can appreciate how hard it must be to be a young mum going through cancer treatment.

I am much older than you (64) and finished treatment for Stage 32C three-four months ago. The process for me was pretty brutal - but you have to say to yourself, ‘think of the aim’… the aim is cure, which is possible for stage 3 cancer. I have had the all clear (No Evidence of Disease - NED) following 3 month post treatment scans and blood tests. The road has been hard. DREADFUL diarrhoea, requiring me to drag a change of clothes round with me after week 4 of treatment, incessant naseau and retching as I contracted sepsis after coming home from the brachytherapy - we think a urinary infection after being catheterised and having such awful diarrhoea. The fatigue too, especially after the sepsis, was really debilitating.

BUT - it’s worth it to live! Everyone reacts differently to treatment; there are so many variables - but chemo and radiotherapy will have an effect on your body one way or another, and it will take time. I’m looking ahead now - my goal is to look after myself and to get ‘all clear’ results at the follow-up appointments. For those of you who are going through treatment, there is light at the end of the tunnel and ultimately, however hard a time you have, your long term health means it’s worth it☺️.

Hoping you’re both okay - you’re young, so your bodies may well recover quicker - onwards and upwards, as my BF says.

Jackie x

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Thank you @Jacks133 for the reply.

Today is my last day of week 1 (cycle 1) and it’s been a tough week. Struggling to get my anti nausea meds right, which has led to constipation so I was at radiotherapy for 3 hours yesterday just trying to get my levels right…

But all said, I’m so happy to have week one done. It feels like a milestone, and even though I know there’s another 5 to come, including the brachytherapy, I feel like I can do this. The fatigue hit me harder than I thought it would, but I’m resting lots, had some naps, and I’m just focusing on the end game, which is get better!

Jackie I’m so pleased for you to have NED after 3 months, that must be such an amazing feeling. I really hope we all get there soon.x

Hi I was diagnosed a couple of weeks ago I am having a pet scan this week and depending on the outcome it will be a hysterectomy or chemo and radiation. Good to hear that you have started your treatment and things are going well x

Hi Tisha,

I’m glad your first week went tolerably well - yes, it was the fatigue that hit me first and yes - I was constipated at first, and the palaver over getting your bladder levels right for radiotherapy… I warn you that in week 4 this turned into dreadful diarrhoea, which plagued me for a couple of months after the end of treatment as well!! Our bodies react in different ways to being poisoned, but the thing to remember is that you CAN and WILL get through the treatment, and that whatever the side effects, if they are transient then they will get better. It’s late effects I am keeping my fingers firmly crossed that I won’t get! Some days I could barely walk to the car for the ride to the hospital, and when I needed blood transfusions I could barely walk across a room - BUT, they will do what’s necessary and although you’ll feel like a pin cushion by the end, it is all worth it to kill the cancer. Please keep us up to date with your progress and remember - we too have been to hell and back with the treatment effects, but there is light at the end of the tunnel! Just make sure your family, your doctor and the staff at the hospital know what you’re going through and don’t be shy about anything - they are there to support and help you.

Jackie
X

Hello all,

I wanted to circle back and update on how everything went with my treatment, just in case anyone searching for help happens upon this thread, I want to provide information on my experience in hopes to help them.

I finished all of my treatment on 6/30. I did 5 brachytherapy, on 6/21, 6/23, 6/25, 6/28 and 6/30. I am in the US, where I think it’s more common to break up the brachy rather than be inpatient and have it done over a weekend. My doctor was a little more aggressive with mine than they normally are. Normally with my doctor, he wouldn’t start brachy until I completed external radiation and it would only be two a week max. My doctor stated that it’s best to do the treatment in as short of a time period as possible and since I was overall tolerating treatment pretty well, he felt comfortable being aggressive. So the two weeks looked like this for me:

Monday - Brachytherapy
Tuesday - External radiation
Wednesday - Brachytherapy
Thursday - External radiation & Chemo
Friday - Brachytherapy
Monday - Brachytherapy
Wednesday - Brachytherapy.

It was a lot, but I survived!

Generally speaking, the brachytherapy process went like this:
6:00AM: I would check in at my hospital. I would be taken to the “pre op” area, where I was given a bed and I changed into a hospital gown. They asked me medical history questions each time and set my IV. I would also meet with my doctor and the anesthesiologist before hand each time. Personally, I had some issues with the IVs. I did not get a port so they had it set an IV in my hands/arms each time. My veins are visible but seem to be deep/tricky for nurses when it comes to IVs. Plus, with being poked so often from blood draws, chemo, and then IVs every other day for brachytherapy, they were running out if ideal places to put them, which is what made it difficult. If you are lucky and have good veins or if you have a port, I imagine this would not be as much of an issue for you.
7:30AM: I was taken to the operating room where they transferred me from my bed to the operating table. They put on heart monitors and leg massagers. The anesthesiologist would work on getting me set to be put under general anesthesia. They would put a mask on that had gas to help relax me, and then the anesthesiologist input medication through my IV to put me under the general anesthesia.
8:15AM: I woke up being carted to a “recovery” area. In the recovery area, I would have a nurse that would set me up with a pain medicine drip, Dilauded, which I had a button for that allowed me to push for pain medication every 10 minutes. Waking up, I wasn’t in horrible pain. The first time was weird because I could feel the weight of the brachytherapy device on my bowel/rectum area- but it wasn’t horribly painful, just uncomfortable. When I woke up the following times, I was less uncomfortable because I expected it. Also, my anesthesiologists would give me pain medication in the OR when I was under, which I am sure helped. Anesthesiologist on my 2nd brachy chose to only give me Tylenol while I was under, I am not sure why and didn’t even know this until the next brachy, and I definitely was more uncomfortable that round. I am lucky in that I do not get nauseated from anesthesia, my family members do and it just causes an unfortunate complication after surgeries, but if you do or are concerned you might, definitely mention it to your anesthesiologists. They can give you patches to put on your skin or medications in your IV that will help with this!
9:00AM: Once the recovery nurse got my pain medicine drip set and felt comfortable that I woke up well, 2 nurses would push my bed over to the radiology department. Once I was there, I was be transferred from my bed to a CT machine. They undid my pain medication for the time and I would do a 10ish minute CT scan. Then I would be put mack to my bed and pushed to another room. There I would be again transferred from my bed to the MRI table. I would then do a 15ish minute MRI. From there I was put back onto my bed.
10:00AM: Once all of my scans were completed, I was carted to a side room and waited for the doctor and a physicist to review the scans and plan out the brachy therapy. This would take anywhere from 1-2 hours, depending on the availability of the doctor, physicist and the machine. During this time I just laid there, I had my phone with me and texted with my family mostly. My nurse was very nice and would hang out and chat when she was able to.
11:30AM ish: Once they were ready for me to do treatment, the physicist would take me from the room to a room that had the machine. He would insert cords to the end of the device that was inserted in me. My treatment only took 6 1/2 minutes. Once that 6 1/2 minutes past, the physicist took me back to my room. On the way back I always made sure to push my pain button because the device was going to be pulled out of me shortly after and my nurse high recommended I do so.

12:00PM ish: The doctor would come meet me right after the treatment. He would remove the device. It pulled it out in 4 parts. before each piece was pulled out the nurse told me to take a deep breath. I don’t know if a deep breath usually helps people, but it didn’t help me lol. The doctor would try remove the 4 pieces in one swift motion for each piece with just a couple second break between each. It’s probably best that way, the swifter the motion the quicker it’s over. First removed was the packing(Which is basically just a long piece of gauze that put in your vagina around the device to keep everything in place). Then I had “needles” included with my device for the 2-5 brachy. They didn’t feel like anything inserted into my flesh that I could tell, these helped to direct the brachy to the full length of my tumor because by this time in my treatment my tumor was thin but long. Lastly, he removed the 2 pieces of the device, one at a time. The whole removal process was less than 2 minutes. The removal of the device is definitely the worst part of all of the treatment but with that being said, it is entirely tolerable. It isn’t something anyone “wants” to do, but in the scope of things you may have to deal with medically, it isn’t so bad. I bled a little after the 2-5th sessions but not too much.
Once everything was removed, my doctor answered any questions I had my IV was removed, I changed and went home! I did throw up 3 of the times on my way home. It did not bother me because I didn’t have food in my stomach so it was mostly just water, but this was likely due to the pain medication drip.

That is generally what my brachytherapy looked like. Tips that I would give people who are going through it:

  • If you have bad veins like me, ask for heat packs to help your veins pop and make sure to hydrate the day before and have some water in the time period you can before you go in for the brachy. Being poked 2-3 painful times before every brachy is not fun! Do what you can to make the IV insertion better.
  • Talk with your anesthesiologist about any concerns you have. They very the medications hey give you based on the information you provide. If you get nauseated easily, tell them. If experience a lot of pain after your device is inserted one time, tell them and see if they can change the pain medications they give you. Since I threw up after going home, I mentioned that to the anesthesiologist and he was able to give me a pill before being put under than helped avoid nausea from the pain drip.
    -Be nice to your nurses and radiologists! Maybe I was just lucky, but a lot of the nurses and radiology techs were very friendly and chatty with me which made the whole process a lot more enjoyable. It was a nice distraction. Be nice to them and they will definitely be nice to you!
  • Bring something to do for the time period between the set up and the actual treatment. For me, I just had my phone and texting people was entertainment enough. The pain medication made my brain foggy so doing anything more involved wasn’t appealing to me. They also recommended bringing books, magazines and headphones for music if that is more your speed.
  • When they go to remove the device, do your best to relax all muscles as much as you can. I have trouble with this, but if your muscles are tense it is harder for the doctor to pull the device out, which makes the whole removable process worse. Try your best to relax. The removal process for me took less than 2 minutes total.
  • Stay positive and just remember that going through the tough part of brachytherapy is the best thing you can do to beat this thing(If it was something your doctor wanted to do for you). It is temporary and you CAN do it!
    I have been finished with all treatment for 12 days now. I was quickly losing energy towards the end of my treatment, and was practically dead to the world for the first week after brachytherapy. I bed for about a week after brachy as well, not too much- probably similar to a light period.
    I have been having some hearing issues that I’ll be discussing with my doctor this week. Hearing issues are a side effect of my chemo medication, Cisplatin, unfortunately.
    I also have had really, really low energy. I am very weak when it comes to walking around. If I walked around my house, I would commonly lose some of my sight and feel weak as though I was going to faint. It improved quickly when I would sit down. Thankfully, this is side effect has improved the last couple days. It was likely due to 1) My red blood cell count being low from chemo and 2) The brachytherapy just taking a toll on my body.
    Besides that, I am doing pretty well. I am slowly regaining my strength and feeling more like myself again. My journey isn’t over, but I made it through the hardest part! I have my follow up scan on 9/27, which will tell me how well treatment worked.

To anyone going through this journey, I wish you health and strength! If anyone would like someone to talk to, please feel free to send me a private message. Now that I am feeling better I will be on more often and I am happy to lend an ear!

Hi Tkd1985! I just wanted to check in to see how you are going with your treatment?? Sorry I did not reply sooner, I got knocked down a bit after finishing brachytherapy.

Hi AMF! Did you get your PET scan results?

Hi,

Yes I’ve been staged 2b grade1 adenocarcinoma no lymph nodes involved.

I am having planning scan on Thursday treatment will he 25 radiotherapy 5 chemo and 3 brachy.

I want to get started but terrified at the same time x