I was wondering if anyone could help me out with understanding this. I am due to have meeting with oncologist on Thursday this week to discuss chemo rads after radical hysterectomy. Histology found microscopic cancer in two lymph notes. What I can't get my head around at the moment is where they focus the radiation. The cancer is out. If there is further spread- they don't know where. Everything I have read talks about careful planning for where the beam goes, and that the chemo just makes the radiation more effective.
At the moment I am struggling to understand.
I know it probably doesn't make any difference to the outcome if I understand or not but it might help me not to be so confused.
Any wisdom appreciated
You might get another pet scan and then they will map your radiotherapy after that. The chemo should deal with anything that may have escaped elsewhere.
Thank you, Philleepa
I am struggling to get it.
It looks like a pet scan might have saved me from a RH which has not benefited me as I now need chemorads. I'm looking for the positive in my situation.
Rufus. I am so sorry that this has happened. I know you must be reeling. My oncologist has told me from the beginning that I would very likely need radiation, which is why he is transpositioning my ovaries during my RH, but I, of course, am still hoping surgery is the only thing I have to face. He did tell me that chemo would also have to happen if it has spread to the lymph nodes, so that is definitely my understanding. The chemo and radiation work best together, but the chemo specifically targets the lymph nodes and any spread beyind the nodes they already found. I am not sure where they will aim the radiation, but I also think you are likely to have another scan. I think the positive is that they found the cancer in the nodes. If they had missed it, you would be thinking you were free and three or six months or years down the line you would have faced an unexpected recurrence. I know that is small relief after what feels like a hard and now unneccessary surgery... but you can do this. In a few months this will all be behind you. Stay strong!
Thank you, I am reeling a bit. I guess you can't change things and they weren't expecting to find it in my lymph nodes. Like you said, at least they found it. I have an appointment to discuss the way forward on Thursday so I guess I'll know more then. I just need to understand to help me work it through in my head.
I'm so sad to hear your news. I can imagine how disappointed you'll be feeling. I'm really sorry and sending you a massive hug x
I've had a few discussions with my consultant about lymph involvement, I had a PET-CT and an MRI which look ok but the surgeon still cant rule out microscopic lymph involvement, as he said the scan doesnt show up cells, it has to be a few mm of cancer before the scan lights up. So please dont get frustrated that the PETCT scan would have altered your treatment plan as it sounds like what they found was very tiny.
When I asked him to transpose my ovaries, he said if I get involved nodes he would prefer to move them after the RH, as they map any affected nodes and that is where they will target the radiotherapy (he didnt want to move the ovaries until he knew where would be safe to put them). So I guess they know whereabouts your affected nodes were and that is where they will focus the treatment.
I dont claim to know or understand much about this, but I just wanted to share with you what little I had explained to me last week when I was badgering my surgeon about this.
Lots of love x
PET scans don't necessarily show everything; I had a PET scan (as well as the usual EUA, biospies and MRI) prior to my surgery but I still went on to be advised to have chemo-radio. I was devastated to be recommended chemo-radio following my RH and I went trawling through all the reasons why I shouldn't have had surgery in the first place. My case was a bit different to yours because my lymph nodes were negative but post RH histology showed the cancer had spread a little further than all the initial tests showed; one of my margins was very close and I also had lympho-vascular invasion (LVSI) and peri-neural invasion (PNI).
My understanding is that the treatment is primarily about the radio. and the chemo (I had cisplatin which seems to be the norm) is done to enhance the effects of the radio. My radio was directed at my pelvic region to zap any stray cancer cells missed by the RH.
In terms of postives I think it is likely that because you've had the RH your brachy, if you have it, should be fairly minimal compared what some ladies seem to go through. My brachy was only 2 outpatient sessions lasting about 15 minutes each and I didn't need any anaesthetic or sedation despite being one of the worst for tolerating any sort of gynae stuff.
Thank you so much, Ladies,
It starts to make sense now. I am especially relieved to know that a pet scan would not have shown the lymph nodes because if that was not the case I might have wished I'd been given one.
Im already feeling a bit calmer.
Much love and big hugs
The brachy news is really good. I hadn't even asked about that when the consultant called because it had made my eyes water when I first came across it. I had seen that it was easier after RH so your experience is lovely to hear.
Big hugs. Xx
Rufus, so sorry you're going through this and don't feel bad about not having the pet scan at first. My dr said it doesn't pick up microscopic cells in the lymph nodes, they're too small to be detected. I had a lymph node removal surgery and they found one pelvic lymph node with microscopic cells. I think where they target the radiation depends on where the lymph node that was infected was found. They always go up a little higher than that too to make sure those lymph nodes don't get infected, because they assume that's where it will travel next. So it will be extended field radiation. I had ovary transposition but since I had a positive lymph and had to have extended field radiation they still got affected anyways and mine where placed up high. I know it must be stressful and a lot to take in, but once you get started it's over pretty quick.
Thank you for your thoughts. I feel so much more informed about what is likely and really reassured by everyone's experiences. I had been able to keep my ovaries and was pleased that I might not have been forced into menopause. I guess it's just one of those things!
I am pleased you are now at the NED stage. I will now focus on getting well and move on from processing how I got here.
Rufus , big hugs to you as well, if you ever have any questions feel free to ask!
I have no advice I just wanted to send all my love. You are such a warrior and you will get through all this too and my goodness cancer won't know what's hit it after all this amazing treatment.
I hope that your meeting answers all your questions.
loads of love to you,
Thank you, Emma
I really appreciate the positive messages. I don't think I would have managed without such amazing women on this site!
Onwards and upwards.