Chemo or rads first? Opinion and suggestions needed!

Hello ladies!

Firstly, I want to say thank you so much for all the ladies here who shared their stories and helped us understand that cervical cancer is curable, treatable, and there’s always hope for us all. I’ve been here for a month and I could definitely say that this place is a safe haven for me and my mother who was just diagnosed with cervical cancer. Whenever I feel worried and anxious, I always go to this forum to find some reassurance and encouragement. Deeply thankful for you guys all!!

Okay, so this my second post here on this forum. Just today, me and my mother went to the doctor to confirm the staging. The doctor initially staged my mother as 2B (poorly differentiated endocervical adenocarcinoma, 3,6 cm tumour), whereas after all the screenings, it was confirmed that the cancer is not only confined within the cervix as my mother’s lymph nodes within the pelvic area were also enlarged. The stage bumped up to 3C due to lymph nodes involvement.

This is the part where I would like to ask you guys for a suggestion or opinion. So basically the doctor said to us that my mother’s cancer is CURABLE and therefore he suggested the treatment plan to be chemoradiation + brachytherapy. However, he asked us to decide what treatment that we want to undergo first, either to go for chemotherapy first (6 times for every 3 weeks to prevent further spread and to control the cancer) and then followed with 25 sessions of radiotheraphy and 3 sessions of brachytherapy. While the second option is to have 25 sessions of radiotherapy first, followed with 3 sessions of brachytherapy and 6 sessions of chemotherapy as the final treatment. I was truly confused when the doctor asked me this. I asked for his recommendation but he said to us that the decision shall be made by either the patient or the family of the patient (however he said that majority of his patient who also have lymph nodes involvement tend to go for chemotheraphy first).

What do you guys think about this? Which route should I opt for and which route is considerably more effective to kill these invasive cancer according to your experience? I told the doctor that for now I think it’s better to do the chemo first in order to prevent further spread and to control the disease, nevertheless, as a law graduate, I don’t have sufficient knowledge on this and I would like to hear from your perspective as you guys have survived this type of cancer or currently fighting against this cancer :slight_smile:

I haven’t made final decision on this but the doctor gave me a day until tomorrow to thoroughly decide on which treatment she will go first, either chemo or radiotherapy, it will start from next Monday!! Argghhh I feel so relieved after knowing the official stage and the treatment plan for my mother. It is true what you guys say, the waiting game and the fear of the unknown are the worst…

P. S: We live in a developing country in Southeast Asia and the healthcare system here is quite different with NHS or the ones they have in developed countries.

Any suggestions and opinions are welcome.

Thank you very much, ladies! Kayla x

Hi Kayla. I’m so sorry to hear about your mum’s diagnosis but it sounds like you are being a fantastic support to her and I’ve no doubt your positivity will be helping her enormously :purple_heart:

I have stage 3b squamous cell carcinoma, so slightly different to your mum’s diagnosis but not a million miles away in terms of staging (I have no lymph node involvement but the tumour has spread into my pelvic wall). The treatment I am undergoing is 4 rounds of chemo (each round being 3 weeks, much like the docs have suggested for your mum), followed by targeted radiotherapy for 5 weeks (alongside some extra chemo at the same time), and then finally 2 or 3 sessions of brachytherapy. I wasn’t given an option to do it in a different order - the way my consultant has explained the treatment to me is that the initial rounds of chemo are intended not just to control the cancer but to shrink it as small as possible BEFORE the radiotherapy, which is what ultimately will kill off the remaining cells. Radiotherapy is targeted at the tumour itself and is quite unforgiving to the surrounding organs and tissues, so ideally the tumour should be as small as possible before starting radiotherapy so that the target area avoids as much collateral damage as possible. Brachytherapy then just finishes things off once and for all!

Much like you, my degree isn’t in the field of medicine so I certainly can’t offer any expert advice, but thought it might be useful to share my experience - I hope it helps!

Jenny x

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Hi Kayla,

I am so sorry your mum received this cancer diagnose. The treatment options you have been given are also on a trial base here in Europe, If.i remember correctly it was called the interlace trial.

I had the regular chemo rads for my stage 2b grade 2 squamous cel carcinoma and wasn’t offered a trial or extra chemo.

Having said that, I would have definitely taken the extra chemo. Treatment for me was definitely doable, I had little to no side effects and did not lose my hair.

With the extra chemo ( most likely a cocktail of carboplatinum and paclitaxel) your mum will lose her hair though. The other chemo cisplatin your mom will receive during her radiotherapy does not cause hair loss.

I am almost 2 years out and am doing really well, wishing all the best for your mom and you

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https://clinicaltrials.gov/ct2/show/NCT01566240

It is indeed called the interlace trial, you can read about it by clicking the link I pasted.

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Hi

Sorry for what your going through but it’s great that you can support your mum. I know you have made the decision all ready as this was posted a few days ago but i like a few others I wasn’t given the option. I was diagnosed stage 4A on the 8th July last year, I got 3 full chemo over 9 weeks then 5 weeks combination followed by 5 targeted radio therapy instead of the brachy. This treatment worked for me. I really hope your mum’s works as well. The first 9 weeks really wrecked me, I’m not going to lie. I lost a lot of weight, I lost my hair (I shaved it as soon as it started, felt quite liberating) which was starting to get painful, I also lost almost all my appetite. For me I was fine for 4 days after chemo then in bed for 3/4 days, different side effects each time. Ice lollies are good. I needed quite a few blood transfusions throughout my treatment but they worked wonders. Everyone reacts to treatment differently but be prepared for what’s to come. Good luck to your mum, hope she sails through xx

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Hey Jenny!!

Thank you so much for taking the time to answer my question based on your experience. I truly appreciate it! How’s the treatment going on so far? I hope you’re coping well and I pray that the treatment works effectively to destroy the cancer!!

Yes, after I read all the replies here and asked for second opinion from other oncologists, we came into conclusion that it’s better to have the chemo first for my mum in order to stop the spreading, shrink the tumour prior to radiotherapy, and control the cancer! First chemo done today for her (it’s chemo cocktail taxol and carboplatin) so fingers crossed I hope these combo will wipe away all the cancer woohoo!!

Can’t wait to hear from you! Praying for your health and happiness x

Kayla

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Hey Donna!

Thank youu for taking the time to reply to my post. I truly appreciate it. True, many friends thought that it’s kind of bizzare that the doctor asked us to choose which treatment to take first. I have finally made my decision to do the chemo first based on all the replies and post here on this site, my own research (in cases where lymph nodes are involved), and opinions from other oncologists.

First chemo done todayy for my mum although it’s still a long way to go (5 more chemo cocktails, 5 weeks of chemorads, and 3 brachytherapy). Oh and thank you for the thorough explanation as well as the reminder regarding the chemo! I’m sorry that you went through some painful side effects from the chemo back then but I’m beyond happy to know that your treatment worked!! Woohooo it’s all worth the fight! :slight_smile:

I hope that my mum’s story will end like yours! I believe she will beat this cancer. Thank you for the kind wishes. Praying for your health and happiness! x

Kayla

Hey Izzy!

Thank you for taking the time to reply to my post, I truly appreciate it! I checked the link that you posted and did my own research as well. We came to the conclusion that most people with lymph nodes involvement are strongly encouraged to undergo chemo cocktail first prior to chemorads and brachytherapy. I also asked other oncologists and they have the same answer too, ideally, it should be chemo cocktail first in order to stop the spreading, shrink the tumour, and control the cancer.

First chemo done today and as you mentioned earlier, it’s taxol and carboplatin which lasted for 5 hours. The doctor also told us about possible side effects including hair loss but for us, that’s totally fine as long as it works effectively to kill the cancer. I believe my mum will beat this cancer!!! :slight_smile:

I’m glad to know that you’re 2 years out and that you’re doing well. Thank you for the kind wished, praying for your health and happiness too! x

Kayla

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Hey Kayla :blush:

I’m glad you found the information helpful and that you’ve decided on the best way forward for your mum - it sounds to me like you’re doing the right thing, it just makes logical sense to me!

I had my second of four rounds of chemo last Monday - it has been more tolerable than the first round thankfully (during the first round I was still in a lot of pain from the tumour which didn’t help anything), although Thursday to Saturday I barely made it out of bed. Nausea and fatigue have hit quite hard, but I’m coming out of it now thankfully. Plus, given I’m not in pain from the tumour anymore, the treatment clearly seems to be working - so I’d say it’s worth a few days of feeling rubbish, really!

How is your mum doing after her first round of treatment? Hope she’s not having too many side effects.

Jenny xx

Hey Jenny!

I’m sorry that you’re going through a lot of pain after the first chemo but I’m truly glad to know that you’re feeling better after the second round of chemos! I’m sure the chemo will effectively work to shrink the tumour and wipe away all the cancer. Keeping our fingers crossed!! 2 more rounds for you and 5 more rounds for my mum before the radiotherapy! We can do it and we will beat this! :blush:

As for my mum, she’s experiencing this pain from her hips to her feet since Saturday (she finished her first chemo on Thursday morning). She told me that it feels like pins and needles in her feet. I brought my mum to the emergency two days ago because she couldn’t stand the pain. The doctor prescribed some painkillers for my mum and although the pain is still there, thankfully, she’s feeling better now. Looking at others’ experiences, I think this is a quite normal reaction to taxol (paclitaxel). I truly hope the pain won’t last long!

Did you feel the same kind of pain after your first chemo? Wishing you all the best for your treatment! Don’t forget to rest and eat well! xx

Kayla

Hi Kayla,

Those pins and needles might be neuropathy, caused by the platinum in the chemo and you and your mom should definitely mention it to her team, they may need to change her chemo or lower her dose. It is a very common side effect

I hope your mom is doing okay

Hi Izzy!

Sorry for getting back to you just now. Yes! The doctor mentioned neuropathy as one of the effects of chemo. Thankfully the painkiller and gabapentin (anticonvulsant medication) truly helped her! I will definitely mention that to her team so they can lower her dose or give it to her gradually! Thank you so much for the info! Wishing you health and happiness always x

Kayla

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Hello I was diagnosed on the 1st of October and have an appointment for results of ct, mri and mdt meeting tomorrow, I rang the specialist nurses today to see if they could give me any information before tomorrow as I am terrified and they hinted that it may be chemo first, I was expecting chemorads, could you tell me why this could be, is it because it’s a late stage xx

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Hey Dawnann!

I hope this post finds you well. As for my mum’s case, she was diagnosed with stage 3c on 9 September and from the scans, it can be seen that her lymph nodes are also affected. We were given the option of whether to choose chemo or chemorads first prior to brachytherapy.

At that time, I wasn’t sure which one to go first, and hence why I posted this thread and asked for opinions. Many ladies here who are in a similar position with my mum (in terms of staging and spread) also did chemo first prior to chemorads in order to stop the spreading and control/shrink the tumor as small as possible before radiotherapy. Therefore, we finally opted for chemo first and so far so good. 2 chemos done for her and 4 more to go, before moving on to radiotherapy and brachytherapy.

I do think that every hospital/oncologist offers a different route of treatment though. For example, I know one of the lovely ladies here, her name is Phileepa and she was diagnosed with stage 4a a few years back. She did chemorads as well as brachytherapy and she got all clear up until now, no additional chemos. On the other hand, there are also other ladies with stage 3B/3C who did the initial chemo just like my mum (usually carboplatin and taxol) prior to chemorads and brachytherapy.

I know this is such a stressful time for you as you keep imagining worst-case scenarios, but I promise you, it will get better once the treatment starts. Sending you big hugs and strength to overcome this! Please stay safe and sane xx

Kayla

Good morning kayla thank you so much for replying I hope your mom continues to do well, it’s such a stressful time isn’t it, has she had many side effects from the chemo xx

Heyy there!

Thank you for your kind wishes and support! Please ask me anything that you would like to know about the treatment and don’t forget to keep up posted. Yes, so the chemo that my mum is undergoing is 6 rounds of chemo (every 21 days), which will be followed by 25 sessions of radiotherapy and 3 sessions of brachytherapy.

So far, the chemo is hitting her quite hard. My mum is 60. Week one after chemo she will stay on her bed, she told me it feels like pins and needles all over her feet, sore bones I guess. Her hair started to fall out two weeks after the first treatment. In addition to that, she also feels a bit numb on her hands and feet until now and she gets heartburn sometimes. In the second week, the sickness started to wear off and she will be able to do things that she normally does. Week three after chemo, she feels totally normal, with no sickness, no sore bones, etc but then the chemo will start again.

I would say that the chemo is tough, but it’s doable. Don’t forget to eat more greens and fruits/smoothies as well. I hope this helps! Praying for you to overcome this! xx

Kayla

Hi I’m 59 so the same age as your mom, is it just 1 day of chemo then another in 21 days? And how long does each session last, sorry for all the questions xx

Ah I see! She’s actually 59 too and she will be 60 next year so basically the same age! Yes, so the system is quite different here in the country where I live, we all need to stay overnight during chemo. The chemo itself will only take about 6 to 8 hours (for two chemo drugs) depending on the dose.

I used to live in the UK and I believe you don’t have to stay overnight during chemo. You can just come and then you will be put on a drip for 6-8 hours (depending on how many chemo drugs are given to you), and then after an hour observation, if everything’s okay then you can go home.

When will you hear from your team about the stage and the treatment plan? Please keep up posted! My support and prayers are with you! xx

Kayla

I’ve got my appointment at 12 Kayla xx

Hi Kayla it’s stage 4, slight spread to liver and back passage and pushing on bladder, some lymph nodes involved, they are treating to cure xx