I was diagnosed with stage 1b1 in Feb 2015 and had RH on 17/3/15. 13 lymph nodes removed of which 3 were positive. Does this change the staging? Would it have been better for me to get chemo and radio quicker and not the RH? Im confused. Treatment starts 4/5/15, 5 chemo, 25 radio and 2 brachy to go :-( Is there anyone out there in the same position?
Hello sweetheart :-)
Just to say that I had exactly the same treatment as you in exactly the same order. Sorry to hear about the lymph nodes but try to think positively about it. Ten were clear. They may well have removed all the infected ones during your surgery. It's really not helpful to start wondering if things would have been better in reverse order because you will never know the answer to that one and nothing can be done to change it. You are on the roller coaster that you are on and we are all here to help support you on your journey.
Be lucky :-)
Tivoli
Did you have any scans (pet,mri, etc.) prior to surgery? The staging is done clinically, meaning that they dont usually change it. I was dx with 1b1 after a negative Pap smear and negative ultrasound. The gyn did a hysteroscopy/d&c for what he thought was a bleeding polyp which came back with squamous cell but no tumor was visible to the gyn. They scheduled me for a radical hysterectomy on 3/18/15 which was abandoned when the surgeon found 3 suspect lymph nodes ( he removed them and as many others as he could find robotically). They came back as cancer (the three nodes). A subsequent pet scan showed nodes in the para-aortic area somewhat enlarged and suspect. I finally started radiation/ chemo last week after I'd healed enough. I was frustrated by the low index of suspicion on the part of the onc gyn and his continued reassurances that everything was fine and "it would be taken care of by the D&C," and then, "it would be completely treated by the rad hyst." He never mentioned he would abandon the surgery for any reason, and although I certainly knew they might appreciate more cancer after getting the path report, I was stunned to wake up to still having my lady parts.
So I'm still staged as a 1b1 n1, but being treated very aggressively (25 radiation with 6 cisplatin chemos, then brachtherapy as inpatient with package placed in surgery and left in place for 3 days, and then the whole run of adjuvant chemo.
All anxiety or and sleep meds have had huge side effects so I'm, well, trying to cope, but not managing too graciously. I definitely would have preferred to start treatment sooner, to not have had to go through that awful bowel prep, the pain and side effects of the surgery (numbness, swelling, scarring, adhesions, copays). I asked the gyn onc about having scans before surgery but was told I should "trust his experience."
I'm sad about the repeated horror /maiming/ assault to my body that is my life at this point. I'm scared I won't be able to stand it and the side effects, but don't want to let my family down. So I keep showing up every day and crying every night long after everyone has gone to sleep.
I had an MRI prior to the surgery which showed 1 swollen lymph node which they said was probably due to infection. They still went ahead with op. Why dI'd they stop you op?
Northof beyond Try and keep strong your family need you, you can do this xxx
Hi Northofbeyond,
I'm so sorry that you are feeling like this. I know exactly how alone you can feel whilst going through chemo-rads, but through the other side, when you don't feel so exhausted, or pukey, or squittery it does become worth it. Every extra day of life is a blessing and you honestly do begin to face life from a different angle. Trust me sweetheart.
Hi Ags Jos,
It's taken me ages to find this out but it seems that in most places, if the tumour is over a certain size, the preferred order of treatments is chemo-rads first and surgery second. This is in case there is lymph node involvement. So Northofbeyond's operation was stopped as soon as lymph node involvement was suspected.
There are two different systems for staging cancer. The one used most frequently on this forum is FIGO (International Federation of Gynaecology and Obststrics). The other is known as TNM, which not only describes the tumour in a very similar fashion to the FIGO system but also includes the suffixes T (for tumour) N (for lymph node) and M (for metastasis). So when Northofbeyond tell us that she is 1b1 n1 she is using the TNM system to confirm that despite having a relatively small tumour, she has been unfortunate to already have some lymph involvement.
I hope this clarifies things.
Be lucky
Tivoli
Thanks for your comments Tivoli. I've so many questions. And I'm angry right now with the whole system. I was diagnosed in January and now I'm starting treatment. I can't help but worry that they have left it and now it has spread on the basis that I was staged at 1b1 and they did almost convince me that this was early stage and that the lymph nodes would be clear. I was refused a smear in 2013 and now I feel let down bynthe whole system and that I don't believe anything they say to me. very anxious and having nosebleeds and feeling dizzy, pain in back and in my neck which I feel nobody is concerned about but me. muscular pain apparently. I just know the ct scan is going to show something different. frustrated that nobody is listening to me.
Hi Ags Jos
I'm really sorry to learn that you have lost so much faith in the system, and I can understand why. I don't really know what else I can add except that I hope your CT scan results don't open another can of worms and that you find your treatment is manageable. You asked in another thread if you would be allowed a friend in the hospital with you during chemo. I would be very, very surprised if that were allowed. Here in Greece friends and family escort patients almost everywhere, but not in chemo. Having said that, I was stunned to learn that friends/family are allowed into colposcopy/LLETZ in UK.
Rooting for you!
Be lucky
Tivoli
Yes my sister in law sat with me through my chemo it does help having someone to support you x
