2b cervical cancer, Grade 3, lymph nodes involved... how bad is this??

Hello everyone!

It's my first post here, but I've been reading so many other posts over the past weeks, that it seems I already know so many wonderful women on here...

My mom has been diagnosed mid October with Grade3, 4.5mm tumor in her cervix that has spread to her lymph nodes. For me the initial news has been so crushing that I just cant sleep properly or think of anything else... we are extremely close and I cant imagine my life without her, she's only 57 and has so much to live for...

The doctors at our local oncology clinic initially told her her csncer was 95% curable, but after the pet scan, which showed a lymph node involvement high almost towards her spine, they lowered the chance to 75%... and it terrifies me.

On 29/10 she started her treatment plan: 28 radio, 6 chemo and 3-4 brachy to be done (6 weeks, if her body will take it they said). So far she's in the end of week 2 and her worst side effects are on days 3-4 after chemo, with a lot of weakness and stomack spasms... she's also loosing a lot of calcium, as blood analysis showed.

It's so hard to wrap my head atound this and try to stay positive. Even though she is keeping her brave face on at all times when Im around.

Can anyone tell me if her situation is really as bad as I think... (please, the truth) are there many survivors with similar diagnose?? I would really appreciate your stories and opinions, as I cant talk to anyone else about it...

xxx

Is her tumour really 4.5mm? That is very tiny for a stage 2B. Do you mean 4.5 cm?  

Those odds are very good. She is far more likely to survive than not survive. That is the main thing. You are obviously a brilliant support and she can get through this with your help. So stay positive and help as much as you can.

Good luck,

Karen x

 

Apologies! I did mean 4.5cm! I do wish it was mmSmile

Thank you for your kind words, Karen. I'm trying to give her support, but I havent really told her how terribly scared or worried I am, I just want to look like its going to be fine... even though inside I'm burning up.

From what I read on here and in general, the lymph node invilvement in bad news... especially for recurrance. I just so much want her to get all clear and to not have her fighting again, but I dont know how realistic it is...

Hello Kay. As far as I am aware lymph node envolvement will mean that her area of radiation will be extended to treat the affected area appropriately, your mum is getting the best treatment to help her beat this thing! I can't really comment about reccurence/survival rates etc because I just don't know BUT a great number of women are treated successfully. I am a 2b lady myself and finished treatment in June and I am doing well. I hope her treatment is going well xx 

There are lots of different negative factors to choose from! Lymph gland involvement is just one of them and it is by no means the end of the world. They have built in that risk factor with the new statistic they gave you and her chancrs are still very good.

If its any help I had lymph node involvement in 5 nodes 21 years ago. I'm still here and treatment improved massively over those two decades and improving all the time.

Stay strong and you will get through this together.

Karen 

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Thank you, Lboyle and Karen!

Yesterday was the last radio for week 2 for her, 4 more weeks to go. She is holding up, but the side effects really hit her during the weekend. Normally she is an energizer bunny, the most active one from the whole family, now 2 days post chemo really hit her with fatique, nausia and stomack cramps...

She also had long beautiful hair, which she now cut short and it affected her too...( I know, least of our concern anyway!) Did you ladies loose your hair with the cisplatin chemos? Shes going to have 6 and they told her she will most probably start loosing them from the 3rd one...

On another note, hope everyone has a good weekend! x

My chemo day was Wednesday and I found I just slept at the weekend - I was told it was the steroids wearing off.

Cisplatin doesn't make you lose your hair - I am surprised you were told that. 

I did like lose my hair but it wasn't from cisplatin but another chemo drug called Adriamycin.I havent heard of anyone having that these days. 

Karen 

Ah, I dont know why she was told that... maybe they just said it to prepare her for the worst... maybe I'll make a separate post on that just to see what reaction others had. Not that it matters of course, at this point the main focus is to cure her (if possible), and to try and heal later..  

Karen, I see from your signature you had a rescan somewhere in September. Hope it went well!

Philleepa, her chemo day is also Wednesday, now Im trying not to bother her and let her rest.... easier said than done, as shes still trying to do it all herself, clean the house, go grocery shopping, diy shops even.... Maybe the activities distract her, so we kind of let her do it...

x

As to your concern about the 75% survival rate, I had a doctor friend who told me some very good advice.  Those statistics include people who are much older than your mom, and people who have not taken good care of themselves medically speaking.  Since your mom is young, and hopefully healthy, her chances of survival should be much higher than the average.  

Hello again Slicknic! Thank you, I sure hope it's higher due to her age and overall vitality (at least she used to be very energetic before the treatments started). I'm just concerned with her weight, as she already looks so thin... her pants are hanging on her with pockets of air... And her face went down. It was crushing news and made it hard for all of us to look into the future... but especially for her of course.

But I agree we shouldnt focus on statistics, as it makes it hard to stay positive. And we need as much positivity with this as possible. 

Hello, 

I can only speak on my own experience but I hope it provides some comfort. I am a cc 2b with lymph node involvement. My tumor was nearly 7cm! I am only 40, but also thin like your mom. I was terrified. I just finished treatment about 3 weeks ago. I had 5 cisplatin, 25 external radiation, and 4 brachytherapy treatments. After only 3 weeks post treatment, I feel almost like my old self again! I did NOT lose my hair. The side effects I had were mainly fatigue, stomach issues and some skin issues, but they are all getting better quickly. At my last brachytherapy treatment, my doctor showed me comparative MRIs from prior to brachytherapy. He told me my tumor was 95% responsive, before the brachy. So of course now I am waiting for February to actually get a scan post treatment, and hoping like heck its NED, but my point is as bad and scary as this all is, we can get through it!!! I stayed busy through treatment too, as much as I could. My energy level was down but it helped to take my mind off things. I wish your mom the very best and a speedy recovery!!!

AS, thank you so much for your message! It does give me hope that my mom will also pull through and her trestment is successful! Keeping busy is all she does, when she has the energy... even I try to keep busy to keep the thoughts away. 

I'm glad you are all done now, before the festive season, which, in my case, really annoys me, as I don't feel like decorating the house or anything like that. I guess I'll do it anyway and hope that it would be a positive distraction.

How was your brachy experience by the way? Did you have it in overnight stays? Was it painful at some points? I'm reading about all kinds of experiences and freaking out a bit...

Anyway, I wish you to stay positive in your wait, and maybe even try to forget at times about the whole thing... as I imagine how it could take over ones life (it sure did ours at this point). Keep us updated and stay well! xx

I was diagnosed with stage 2b about 7cm tumour but  lymph node involvement. As far as I know also no hair loss with the cisplatin. Due to being really thin i didn’t have chemo and radiation so I have no experience of that But it’s a very successful treatment. I’ve been discharged from follow up now. Like others have said, it’s not a loosing battle the radiation will kick some butt :) xx

Hi Kay, 

My brachytherapy was so much better than I thought it would be. I was really scared for it but it turned out to be just fine. I had 4 treatments, broken up into 2 overnight stays. It was mainly just a little boring and uncomfortable, since you have to lay flat on your back for the entire time - about 30 hours each. But even that sounds much worse than it is. The only pain I had was when they remove everything, but even that really wasn't bad. And its over in seconds. I spent the whole time eating (finger foods are best since you cant sit up!), reading, watching TV, or playing on my phone. My family came to see me, which was a nice distraction. After I was discharged each time, i had about 2 days where i was very tired. After that, i felt better than before treatment started. I dont know if everyone feels that way or if i was just really lucky. I would definitely recommend looking for Phileepa's blog entry on her brachy experience- it helped me immensely! She detailed it from start to finish and it really calmed my fears reading it. You can search her name and you will find it. This blog has been the best thing to get me through this, other than family support! Its so nice to hear from others going through the same thing. I will be thinking of you and your mom this holiday season, and wishing the best. I know she is going to get through it. She has one of the most important things, your love and support! 

Amy xo

Aww Amy, I'm made up that my post helped you. When I was was waiting for my treatment I was more afraid of the unknown than anything else. I wrote it down in the hope that it would help other people (as well as keeping my mind occupied) and I'm so pleased that it has xxx

I am 57 too and was diagnosed with 2b 7cm whopper and a swollen lymph node so they zapped that in the extended field.

at my 3 month MRI I had no evidence of d and I’m 10 months post trea now and still clear

didnt loose my hair but drinking lots of fluids helped me a lot.

apparently it helps you flush your kidneys during chemo and helps with the effects of radiotherapy.

i did get tired in the afternoons ( I had radiotherapy in the mornings) and I did get occasional radiation runs

 it apart from that it’s all been positive 

Hello Amy,

Thank you for your words of encouragement and for thinking about us! It means a lot. My mom is in week 4 now, 2 more to go and then brachy. I still have no idea if she will be staying overnight over there, but most probably not, I think it will be done in 3-4 separate days. I will check out the blog of Phileepa anyway, thank you for suggestion! Thats why these kind of forums are so helpful... as we get to feel that we are not alone and so many other women went and are going through the same thing. Even though in my case Im just a family member, I feel like Im going throught it myself (can only imagine how it feels to actually be the one)...

Did you have your follow up scan or not yet? Keeping my fingers crossed for you and hope you will be getting your all clear at each checkup! Xx

Thank you Charlene! And congrats on being discharged from the follow up! It should feel good to be done before all the holidays and to enter the new year with new hope and positive outlook:) 

Did you just have radiation without chemo? Ive read about other people who had just radio in stage 2 or even 3... so its good to know it could work that well!xx

Mousehouse, its so good to read about your positive experience with this (as positive as it can be in these cases)! Wish you to also stay clear with all the other checkups! 

Treatment is an ordeal for my mom (mostly related to food and aversions, plus stomach cramps),  but I hope she will also pull through successfully. She is drinking a lot of warm water with lemon, which kind of helps, but we are warning her not to overdo the lemon part...

Xx