Well it’s a week since my hysterectomy - my consultant just called to tell me that although my lymph nodes appeared healthy and normal from eye, one lymph node each from either side of my pelvis (so 2 nodes) contained cancer cells… they have said, because I am so young and they want to be 100% sure, they want to now do chemoradiotherapy…
I feel disheartened and scared, again
Has anyone else had this? Is the chemo bad? Really thought it was all over, the margins they took around my cervix were good (I was staged at 1B2) so I guess that’s something…
I was in a very similar situation to you two years ago when I was diagnosed with 1b1 CC with lymph node involvement in five of the nodes they took out. I too had a laparascopic RH and lymph node dissection first. My surgeon was very hopeful that that would be all I needed, but because of the lymph nodes I had chemo rads as well. I know how you feel, and when you are feeling low and vulnerable it just seems like a kick in the teeth. I remember feeling tearful and anxious, but here I am two years later feeling very well and cancer free. I had six weeks post op to recover and get my strength back up, which I felt I needed, although at times I just wanted to get it over and done with. I am quite a bit older than you, so hopefully you will heal fast. The chemo rads was a bit of a pain as I had quite a lot of nausea, but each person responds differently, and many women on this site find it much easier than they imagined. I had five weeks of weekly chemo and daily radiotherapy ( not weekends though) There are various posts and blogs on the forum from women who have shared their journey through treatment, which might be helpful as they often come with lots of tips for how best to manage side effects if you have them. Five weeks might seem an eternity at the time, but in the scheme of things is short really. Soon you will be out the other end, and getting on with your life.
This is a great site for sharing anything you want to, and for getting support and hope from others. I'm also amazed by the humour that you often find in posts, which really lifts your spirits. Don't hesitate to get in touch if you need more info. All the very best x
i had excatly the same I was the same stage as you and they said the same after surgery that he had got clear margins and no swollen nodes, but it came back with one node having microscopic traces in!! And I like you was terrified!! I thought in my head i could deal with the hysterectomy but chemorads was a whole different thing!! But other than feeling sicky throughout and bowel issues the last couple of weeks it realty wasn't as awful as I thought!! I made some amazing friends on the chemo ward!! and we sat and laughed and chatted through the day..infact I stopped my husband from coming after week one as ignored him the whole day lol!!i was told the same as you they wanted me to see my children have grandchild (consultants words) so recommended extra treatment!! They know what they are talking about and I wanted to do everything i could in hope it won't come back!! you will be fine tho the fear of the unknown is so much worse than the reality!! Your young and you will soon bounce back...just take 5 weeks for yourself if you want to sleep or rest do it...your body will tell you want it needs!! 3 1/2 weeks after it had finished I was back at work and driving!! Now life is back to normal...ish lol!! Still have wobbly days but they are becoming less and less!!
although I didn't have the surgery first, I went through the chemorad. You will NOT loose your hair as the drug you will receive during chemo is called cisplatin and it does not make your hair fall out. Some say there hair gets thinner but I didn't notice a thing at all. Everyone is different in how treatment effects them but the majority escape without too many side effects. The most commin will be loose bowels after a couple of weeks into treatment.
chemo will be once a week... you sit in a comfy chair with your feet up all day and watch movies or chat, it really is a long day but you will meet so many people and learn so much
rad will be daily, in and out, it literally takes 10 minutes from getting there to leaving, unless there is a line up. It does not hurt and you don't even have to change out of your clothes. you just pull your pants down a bit and lay on your back. Where comfy pants that easily pull down.
You go Monday through Friday with weekends off.
You will be able to do this. I'm 2 months post treatment and I feel great. I'm back to work. Don't feel tired anymore and my energy levels haven't been this good in a long time.
Thankyou for replying.. I really have been worried sick all afternoon and evening, well since he called..
to be honest after he expained it, i felt like they were panicking that it had spread to every organ i have to offer, since it was in my lymph nodes, it was certainly trying to get out.. and thats what freaked me out most.. So i guess the chemoradiation should in theory make me feel better, since its likely to zap the microscopic cells into nothingness :-) ... Death terrifys me far more than chemo does!
i am 2 weeks post chemo/rads as well. I found it relatively easy,just some bowel issues with the rads. Nearly everyone gets some sort of bowel problem but tell your team as soon as it happens and they are right in there to sort it out. As Lolli says its just 10 mins,well one day I counted how long the machine went for and it was 92 seconds! I managed 4 out of 5 chemo as I had a reaction to it the last couple of times,but nothing major...just a rash. Its all very doable so dont worry. Treatment will fly by for you,honestly. The worst bit for me was the 3 hour round trip for treatment. On chemo days,if ermitted,take a friend with you. I took my best friend with me and I swear some days they wanted to throw us out due to too much laughter haha. We even had funny t shirts made for chemo days. A good sense of humour helps a lot. You will manage just fine.
I had my hysterectomy five years ago and even though all my nodes were as innocent as can be I still was sent to have chemo/rads and brachytherapy. I can't tell you how disappointed I was. Five weeks five days a week for the radiotherapy and one day a week for the chemo. Chemo day is a long day because which ever way around they choose to do it there is about four hours of chemo and basically you are at the hospital the whole day. Chemo can make you feel a bit nauseous but there are medicines they will give you to prevent this. just make sure you take them as prescribed and don't wait to feel ill first! Bad mistake! If you do take the medicines and you still feel nauseous then tell the nurses immediately and likely they will try you out on something different. Your chemo will most likely be Cisplatin and this does not make your hair fall out. There are apparently one or two possible side effects with this but most of us have an easy ride. I found that I stopped liking coffee but that was about it. The radiotherapy isn't bad either, though you may well develop diarrhoea about halfway through your course of treatment. It's not BAD bad, it's just annoying. hopefully you will learn to laugh about it. And beyond that you will feel tired. Don't push yourself, nap when you fancy. For the five weeks of treatment and a wee while beyond it's worth imagining that you are on a ship and you just have to roll with it.
Oh, and by the way, chemo-rads really kicks cancer's butt no matter where it has reached so please don't worry about that, it will have nowhere to hide :-)
I'm in the same exact boat as you. Mine was originally stages 1B2. I'm 2 weeks post radical hysterectomy. My Patho came back last week & showed that the tumor was bigger than what the PET Scan showed (3.5 vs. 5.5 cm) & that 2 nodes were positive. Now I have to have radiation & chemo as u described. I see the radiation oncologist tues. I honestly haven't been upset this whole journey until now. It's making me worry that it may have spread any & everywhere. Plus, I'm worried about missing work. Does anyone know if u are able to work with these treatments? I'm trying to stay positive...
Please don't be afraid of the next course of treatment :-) They are much less scary in reality than they might be in your imagination. There are women who have continued to go to work throughout their treatment though I think very many of us become far too tired to consider it. I guess it depends to a degree upon what work you do. But if you do feel too tired or too unwell to go to work, then don't!
Thank you for the encouragement :) If lymph nodes are involved, does that automatically change the staging from 1B2 to 3B using the TNM staging system? I plan on talking to the oncologist about this, and I'm a little irritated that he didn't mention staging when he went over my patho report with me. I didn't think about it at the time because I was caught off guard with all the radiation/chemo talk.
1b2 and 3b are both from the FIGO staging system. With the TNM system the value for T can be 1, 2, 3 or 4 If there is no lymph involvement the value for N is 0 but if there is lymph involvement the value for N is 1 If there is no metastasis the value for M is 0 but if there is metastasis the value for M is 1 So on the TNM system I believe that you have been re-staged from T1,N0,M0 to T1,N1,M0 On the FIGO system you may have gone from 1b2 to 2b, which is exactly what happened to me just because of the size of my tumour. I had no lymph node involvement. Either way, I went on to have the chemo-rads and to be perfectly honest with you, I found those a hell of a lot easier to deal with than the radical hysterectomy.
please do not worry too much about staging as it will do you no good. The chemorad is manageable and is the same regardless of staging so it really doesn't matter. The amount of radio you have will be anywhere from 20-30 treatments depending on the specifications of the machine not necessary the size or placement of the tumours or amount of nodes involved.
The number of chemo will depend mostly on how your individual body handles it, but they try to aim for 5 or six but even 4 is acceptable. The chemo of cisplatin is mostly to help the effective of the radio.
Rest assured this treatment is very effective in killing off any floating microscopic cells.
I personally believe that they should explain in more detail in the beginning and give the option of the treatment of chemorad or surgury. If they would have explained in the beginning that if nodes came back positive then chemorad is required most people with the right knowledge would opt out of surgury from the beginning. Hell, even if your nodes were clear chemorad ensures that microscopic cells will be eliminated if any where missed by pathology.
Can I please ask you all a question? I am booked in 25/11 for my surgery (stage 1b1). My understanding of the op is that they removed the nodes, carry out a frozen section then only proceed with the hysterectomy if the nodes are clear. Quite a few of you are saying the nodes weren't clear but you still had the hysterectomy. Were your nodes checked during your surgery? I have been told they take about 2 hours to do a frozen section on the nodes while you are under.
My nodes were not checked during surgery. My uterus, fallopian tubes, margins, and lymph nodes were all taken out at the same time and all sent off to pathology together. It took about 3 days to get my pathology report back. I'm not sure where you live, but I'm in the U.S.A, state of Oklahoma...I don't know if that makes much of a difference, either.
thanks for your reply. I am in the UK so maybe they do it different here. I've been told they will check the nodes then if they are clear proceed with the hysterectom.
