I hope everyone’s well regardless our circumstances… I’ve been diagnosed with poorly differentiated squamous cell carcinoma. My tumour is 3.7cm x 3x1cm. (1b2)
My pet scan also showed metabolically active bilateral external iliac nodes and right common iliac nodes.
(Bump up to stage 3)
I’ve been scheduled to do chemoradio and brachy after my IVF treatment.
I’ve been viewing my diagnosis as positively I can but the lymph nodes is starting to scare the hell out of me. I’m looking for advice and perhaps anyone who’s gone through similar diagnosis.
Any positive stories would be great.
thanks in advance
Hi nat, how’s your Ivf going? I’m doing pretty good after treatment. My bladder gets irritated sometimes I think it’s my urethra, I had a lymph node removal surgery before treatment and they did a bladder biopsy. So I usually just take a day or 2 break from the dilators, which I feel irritates it and then it calms down. The hot flashes from menopause are kinda bugging me right now but dr wants to wait a little before putting me on meds. The more time that goes past it just seems like it was a bad dream.the lymph node involvement scares me as well but I try not to focus on that part and hope it got all cleared out. Hope your doing ok if u ever have any questions feel free to ask :-)
Sorry you find yourself here with the rest of us but there really is an amazing bunch of ladies on this site always willing to help. I can't give you a lovely positive story (yet) but I don't have a negative one either. I was diagnosed same as you with 1b2 but my tumour was much larger. The MDT team were concerned about lymph node involvement so I had a pet scan which highlighted 2 external iliac lymph nodes very local to the tumour. I asked how this changed my staging and I was told my stage is the same just changes to 1b2n2 (2 lymph nodes involved). I don't know if this is because it is still contained within the pelvis. My treatment plan is 5 chemo, 25 radio and brachytherapy. I have completed 2 chemo and 7 radio. Like you I am concerned about lymph node involvement. My oncologist told me they will do extended field radiation to deal with not only the two lymph nodes involved but the whole chain of lymph nodes in case there is any microscopic disease left. This does make me feel more confident that they are covering everything to try and get the most positive results and lessen the chance of recurrence. I'm definitely no expert but please feel free to message me if you have any questions and I'll help if I can. We can do this!
Oh and try not to read online about lymph node involvement, I lost so many tears and sleep from doing that, it’s just not worth it. I remember I read a couple of good stories on here though that helped me get through it .
thank you for this! It calmed me down a lot. I did spend a night online reading about lymph’s and that’s how this panic post came alive, i feel this diagnosis really teaches me how to try to stay calm in the storm. Which maybe isn’t so bad after all :).
im so happy to hear that you’re doing good after treatment ❤️
I’m currently trying to getting into the habit of drinking 3L of water a day so that I’ll continue to do so throughout the treatment (I start Oct 22 if not IVF wants more days, my Dr was ok with that).
IVF is going okay, I have an amazing ivf Dr who’s transparent with me (I prefer it that way) and he says it’s a wild shot. (50:50) we get something out of it. I’m currently doing menopur injections in my thigh, so far I think I’m responding to it well. I’ve kind of come to terms with the facts that it’s okay if we can’t get any embryos, as long as my mind is at rest and I know I’ve done my best. How are you coping with this bit?
I really liked the bad dream part. I can’t wait for this to be a bad dream ❤️
i hope you’re well! Thank you for this. It really helped me a lot!
we’re almost the same, and I’m about to start my treatment next week. Did your radiotherapy tattoo end just below your breast? Because that’s we’re they put the tattoo on me :)
i was told mine was local too, but when I asked about stage 3, they said it’s a new staging from this year and I shouldn’t be caught up about that (very easy to say lol).
I havent really been speaking with my oncologist for 2 weeks (I’m being send to loads of pre scans and doing IVF). and I think the panic monster took over a bit when googling a tad too much. I have a catch-up with them on Tuesday so will be asking questions then :).
How are you feeling during your treatment?
This is facts... yet, with a bit too much time on my hands that’s all I wanna do! Need to keep myself occupied:)
5 lymph nodes involved...very aggressive tumour....22 years ago!! Still here :)
Thank you Karen!
That means the world to me right now.
I have my days with the loss of fertility thing, I think sometimes I forget because I’ll catch myself saying “oh when I have a kid” then I remember and get sad, so that part is pretty rough. My tattoo was right under my breast too, but my dr said that was just to line up the lasers that my actual treatment area was only a little bit above my belly button. Mine was pelvic lymph node involvement, on my scan I had a shadow in my paraaorta so that’s why they did the lymph node removal surgery but thankfully the ones he took out from there were clear, he said had one been positive my treatment field would have gotten extended a lot more.i asked why I got leap frogged to stage 3 that I read some people stage stays the same but they just add lymph node involvement.im from the United States and he said that’s just how they do things over here , so that part gets kind of confusing. And I get why you get scared because I got scared too at the words stage 3 , but my doctor says stage 3 is still very curable so I just try to hold on to that .but I do feel like lymph node involvement adds a lot more stress to people.
I can relate to that honestly, the first thing that came to my head when I got diagnosed was not even “will I survive the cancer” it was more : “will I be able to have kids?”
i was even thinking about becoming pregnant now (before treatment) to prolong my treatment dates so I could atleast have one. Then rational thinking comes back and I understand that fertility is a heavy price we need to pay to get better.
i even told my boyfriend that it’s ok if he wants to leave me because I’m now incapable of carrying babies, But the way he looked at me when I said that was proof enough that thoughts like that are just in my head and we can get kids in different ways (as he sais, don’t worry babe we go get some when we want them later).
Surrogacy is legal in the states which is great for you! I’m in London so I’m looking at clinics abroad even if we fail to harvest any of my eggs, we can still use my partners sperm and an egg donor in the future (I’m 29 I don’t want them until a couple of years time anyways) or adopting ❤️Is that something you looked into?
I know the price tag is crazy(!) but I’m thinking if I really want them i can create a fund and start saving for it now and maybe in 5 years time I’ll be somewhat ready for it.
I don’t know why but my gut tells me I’ll be just fine. I need to trust that gut and let go of lymph thoughts because truth is, if it wasn’t for me lymph’s I would be able to have a TR/HR so I need to trust that the cemorads will do it’s job. And it’s so comforting hearing that you’re doing fine after treatment, I read about so many catching lymphodema or other severe side effects.
So thank you for existing and being ahead of time of me. I hope you had someone ahead of time of you who supported you.
I wonder why they haven’t scheduled a surgery to remove my nodes, I read that a lot here. I will ask them tomorrow as well about where my treatment will finish ❤️
I don’t think everyone has a lymph node removal surgery, they did one on me because of the shadow in my paraaorta.so they wanted to make sure that area was clear otherwise my treatment would have been a lot more extensive. I wish there hadn’t been a shadow in that area and I had skipped that surgery though, because I had to wait a couple of weeks to heal then start treatment and I have scars on my stomach ,and my sides still feel a little sore where they removed lymph nodes from my sides.for some reason my left foot tends to feel sore sometimes and get red and on rare occasions swell a little after that surgery. Sometimes I get a little nervous of getting lymphodema in it , so I just try to monitor it.i haven’t really looked into surrogacy or adoption yet , i feel like I needed to give my mind a break and just focus on my scan and getting the all clear.
Typed out a big long message and for some reason it kept coming up as error and wouldn't let me send. Yes tattoo in same place as yours. My first tattoo. Had a few teething problems with treatment in the beginning. Veins disappeared at the mention of chemo so had to have a picc line fitted and couldn't manage to get my bladder to the right level for radiotherapy but nothing major and it's been much better this week. You are given steroids on chemo day and for three days after (I think our treatment might be similar). I am having lots of good days and two low days just before I go back on the steroids. Chemo day today so boosted with the steroids and all is fine with the world again. 3/5 chemo done and 11/25 radio done and thankfully nothing awful yet. Bowel and bladder irritation is meant to get worst the further along you get into treatment but will deal with that as and when. Hope your doing ok. It's hard in the beginning. X Maria
Hi Maria, I remember you from another post. I’m glad to see your halfway through, that’s great! I hope u weren’t to sore from your ovary surgery. My veins hated chemo too, I would always use hand warmers on them before chemo, it worked wonders. I hated the whole bladder thing as well, I know sometimes it could get stressful having to get it just right before treatment. Glad you’re doing ok:-)
Hey Rissag and Maria!
i wrote a long post but it got deleted too lol :)
thank you for your replies it's nice to hear that both of you has been doing great. My oncologist is lovely, but slightly distant, I feel like she keeps a lot to herself when I ask for details, which is okay I guess, she takes one thing at the time and if I have chemo questions her answer is: well take it just before you start chemo etc. I find it slightly frustrating since I'm extremely solution orientated and like to understand the issue so we can find the solution. With her it's like vague guidelines... oh well. Rissag: my treatment will also go just above my bellobitton she said, it's just to determine the laser something the tattoo dot.
maria: sorry to hear this is your first tattoo, but it's quite cute it looks like a little freckle :).
ivf is seriously rough, i'm really complaining now I know. I'm grateful that I got the opportunity to do it before treatment but wow, I'm constantly constipated, with extreme abdominal pain. I have pain in my joints, abdominal pain, back pain, I'm dizzy, nausea and tired.
I think it's worse since I'm constantly wondering if it's the cancer that's spread or the IVF side effects.. my last scan is tomorrow and if everything goes as planned we are having the harvest egg op, on Monday, and then my oncologist decided to post pone my treatment with a couple of days, so I'll finally get to start!
maria: steroids sounds lovely haha, 3 good days are cool!
is a Picc something that everyone gets and do
you keep it on for when you're at home?
Im sure your symptoms are probably Ivf related, so try not to worry. I didn’t really have any symptoms with that , but i think it was because I didn’t really have any eggs. I think the more eggs you have the more your ovaries expand and give more symptoms, so hopefully that’s good news. I hope your surgery goes great tomorrow and that their able to get many eggs.( fingers crossed)
a picc line is optional , it’s a little plastic tube they put in your arm to access a vein to make it easier for chemo and blood draws. It stays there through out treatment. I thought about getting it halfway through my treatment because they were having trouble with my veins and it would take them multiple attempts to get my chemo line set up.but I never had any trouble with my blood draws, maybe different needles idk. I decided against it though because I was halfway through and because I have a little dog that likes to jump all over me , so I was nervous she would accidentally irritate it or get dog hair on it lol.i then got hand warmers from a sporting goods store and would place them in my Hands and rub them on my arm veins And put mittens on and wear warm clothes and only remove the warmers until they were ready to access a vein. I think it just gets so cold in Chemo rooms and veins just don’t like it, after that I never had a problem and stuck with that routine for the remaining chemo sessions. But the picc is something to think about.
thanks for the explanation, I really appreciate it and I think I'll opt for a picc line: I got antibiotics and anastrtics from my hand vein yesterday at the egg harvest day and it was hurtful and troubling. I think I'll opt for the pic line tbh.
we got 2 embryos in total that's now in the freezer. I don't know what that realistically even means so I'm gonna put the kid-thoughts in the freezer as well for a couple of years until I can deal with it emotionally. I'm glad I've done it but it's time to put a lock on it so I can focus on treatment.
how are you feeling since it's close to November? My fingers are crossed for you! And are you working? Did you work before?
Yeah I think the pic line would be a good idea, just make sure to tell your doctor so that way you’ll have it for your first chemo.2 embryos is good, do you know how many eggs they got out? I got 2 eggs so I think my chances of creating a embryo are slim to none.it was worth a try though, I think I would have regretted not giving it a shot.my scans in two weeks and my results are a week after that,I’m getting a little nervous and anxious .i had a pretty big tumor, but the thing that scares me the most is if I’ll still have swollen lymph nodes and something scary going on with that.no im not working, probably going to take a break for awhile then start looking. I was off for a little before my Pap ,then decided to get everything taken care of eye exam, dentist and my Pap before I got a new job. But that’s when I got the bad news of my abnormal pap , that was January. It’s been a long year stressful year for me but I hope I get good news so I can move on and try to put this craziness behind me.
I got 4 eggs out: 2 immature and 2 "good quality",
they binned my immature ones and only went for my 2 "good ones" for fertilisation and both became embryos so I wouldn't say you're chances are slim to none :).
Yea I'm not working either, crazy year it has been indeed.
You're in my prayers and I'm sure you're scan is going to be fine! I feel like you would have the cancer symptoms back if that wasn't the case!
Oh thank you nat , this gives me a little hope now, I had 3 eggs come out and 2 were good so they froze those. I never had any cancer symptoms before, that’s why it was such a shock to me at how big and bad my cancer was. I had just barely started to have some abnormal spotting right before my Pap but not for that long.and no pain aches or hurtful periods nothing. Now I have dull lower back aches and stiff hips when I get up, I think from radiation and my menopause symptoms. But maybe they will get better with some HRT. My doctor didn’t want to do anything right away and give my body a break, and they were hoping that my ovaries weren’t going to get affected by the radiation because I had ovary retransposition when they did my lymph nodes surgery. But I think since I had to have extended field they still got affected, they were hoping maybe my symptoms were just treatment related and would fade,but the symptoms have just got worse so I’m sure it’s menopause.my dr will have to figure out what to do with me now with the hrt. I’m not to really sure when, but I hope it’s soon because my hot flashes at night are annoying me lol.