Hi
I have just had my post treatment 3 month scan (25 radiotherapy 3 brach and chemo ) stage 2b adenocarcinoma. The scan showed inconclusive and 1.6cm left. From reading otter posts this does not seem very unusual for adenocarcinomas. I am booked in for an eua next week but went to see the surgeon yesterday and he has frightened the life out of me. I was told it’s unusual to have anything left at 3 months and as soon as they have taken biopsies and confirmed it is residual and not scar tissue they will discuss my options. I asked if the treatment could be possibly still working and he said it’s very unlikely. I also asked if they could re scan and was told the only way to tell us with biopsy. He discussed with me the possibility of a hysterectomy and went through all the complications and then said because I have had radiotherapy my internal organs would be fused which would bring complications.
I really am at my wits end. Has anyone else had similar conversations or had a hysterectomy after having radiotherapy
So sorry that you have been given this news - and such an insensitive response by your surgeon. I know adenocarcinomas can be tricky, but this is not the news anyone wants and you really need a chance to discuss all the options, because I believe there are others. Although you cannot have more radiotherapy some people respond well to extra chemo. It sounds like there is a possibility it’s scar tissue, and we’ll all keep everything crossed for you there. If it does turn out to be malignant, don’t be afraid to ask for a second opinion, or what other routes they could go down other than surgery. You are right, it’s very unusual to have a hysterectomy after chemo-rads, although not unusual to have chemo-rads after hysterectomy. Hopefully some others will have had experience to share with you. Thinking of you. X
I am in the same situation as you. Stage 2b adenocarcinoma. I had post treatment scan at 2 months this showed the tumour (4cm prior to treatment) had reduced but was still present. My oncologist told me that adenocarcinoma is slow to respond and to wait and have another scan in 3 months. He says 50% of patients he sees do not have a clear scan at 3 months.
I return in March not sure what Will happen if tumour still present. I’ll cross that bridge when I get there.
I’d definitely ask for a second opinion.
Take care xx
I also had 2b adenocarcinoma. I was Ned after treatment, but at 9 month check up something small was seen. Had biopsy, mri and ct and my cancer had returned-same place, so residual tumour.
I tried a salvage hysterectomy, but they opened me up and stapled me back up without doing anything as my radiation damage was too bad.
I then had a total pelvic exenteration as my cancer had not spread outside the pelvis. Give me a shout if you need any info, but I hope you won’t need anything so drastic. x
Hi jokitchen
I was in same situation as you back in 2015 - stage 2b as well. 3 month scan wasn’t clear so another scan booked for 2 mths later. This scan wasn’t clear either. Booked in for an eua to investigate with thoughts pointing towards recurrence and possible hysterectomy. Eua suggested hysterectomy possible and further biopsy taken and date booked for surgery. Decision taken to book a further eua prior to surgery. In the interim original biopsies and latest biopsies were sent to USA for further analysis!
Was told there were microscopic cells present.
At the final eua (6 weeks later) I was clear with no evidence of any cancer.
This was a long stressful journey (7 months of not knowing). However a great result & here I am six years later having been discharged.
After the final eua my consultant said to me it’s a fine line and maybe in hindsight they’d reacted too quickly. In her opinion the treatment continues to work for quite a few months- and I needed that time.
Hang on in there & by all means push for 2nd opinions.
Thanks for replying to this post, I’m a 2B girl too and I have my 3month post treatment MRI end of Feb. I have accepted that the chance of an NED is still too early and to expect something like this.
Thanks everyone for your replies. I am booked for next week for the EUA and then a 3 week wait for the results. I think though when I get the results I will insist on a further scan before treatment. Good to know there is a possibility that the radiation treatment can still be actually working. Good luck to all who have their post treatment scans coming up x
Hi There,
I’m so so sorry to read that chemorrads didn’t fully worked you. I know very well how upsetting that can be because I went through exactly the same thing few months back. But I’m here to give you some light and hope by saying that my radical hysterectomy afterwards wasn’t as scary and worrying as I initially thought. If you are given the chance to go have a robotic, laparoscopic type of surgery do go for that. It has the fastest recovery time and is easy on your body and overall mental health. I was able to do my every day life chores within a couple of months after my surgery end of October 2021 and beginning of this month I also started exercising. So, to answer to your question, yes a hysterectomy after Chemorrads is a standard if the treatment hasn’t fully killed the cancer cells. Do ask the doctors about the type of surgery i recommended.
Wishing you all the Best
YOU GOT THIS!!!
Thank you for sharing this. I’ve finished treatment almost a month now I am currently in the same position as my oncologist mentioned possible further treatments after chemorads. I’m guessing this is because my tumour was still present before brachytherapy it didn’t significantly shrunk after external radiation. I’ll be meeting w him in a week to know what the next steps are. I’m actually wondering what possible further treatments are there so pleased to know that a hysterectomy can be done in case the tumour is not all gone. Such a worrying time indeed. I wouldn’t want the hard chemo if possible, did you just have the hysterectomy and no chemo afterwards? xx
Hi May,
first things first I wish you the best of luck for your next appointment.
I had 25 radio +5chemo + 3 brachy , same treatment as @jokitchen. I had a NED after 3 months, but after that my scans cam back inconclusive. My Oncologist suspected inflammation due to scar tissues, but to be on the safe side she referred me for to the gynea for EUA. During that it was performed a deep cone biopsy which confirmed a area of 3 cm of cancer cells. Sometime these can be cells that are more persistent to the treatment, hence the option of robotic radical hysterectomy . Everything went smooth and I was discharged the day after the treatment.
P.S. I wrote above that I 'was able to get back to my every day life after 2 months, but what I meant was 2 weeks. Hope this helps.
The thing I find I’m struggling at the moment is the Menopause, but this is a whole other story. I don’t know how old are you, but if you are young and far from the natural menopause age, I would encourage you to inform yourself about it , just to not have to deal with it all at once last minute.
Thank you so much for your reply. Everything right now is really confusing to me as I was expecting to wait for 2-3 months for the scan to know if treatment has worked. So imagine my surprise when he said I might be needing further treatments. I know it’s not the norm to have hysterectomy after chemorads it’s usually the other way around. I was told that I’m gonna go to menopause anyway because of the chemorads, is there a difference if I’ll have hysterectomy? Sorry for my ignorance. I’m 37. I’m thinking there’s only few options for further treatment. Either the hard chemo or surgery. Right now I’m trying to put myself together and just wait til the appointment.
During my initial chats with my Oncologist, I was explained that hysterectomy prior to chemorads is recommended in early stages when your cancer staging is either 0 or 1 , but a 2b stage requires chemorads prior to hysterectomy. Sometime, with a adenocarcinoma the treatment doesn’t fully work, but other times it does.
Regarding your young age you will need HRT, and not only for the hot flashes and sleepless nights we use to know in the past, but mostly to prevent osteoporosis, heart disease, dementia etc. My oncologist recommended HRT right away after my treatments but I took some time to convince my GP to issue that. GP’s are scared to prescribe it because they are unexperienced, but you should definitely get it. For more info on this check the page British Menopause Society. and get some prints out to discuss it with you Doctor. I’m 41 btw and currently taking only Estrogen spray Lenzetto 3 sprays
Thank you for this info it helps a lot. My oncologist is also my surgeon so I guess he would discuss all the possibilities in case the chemorads wasn’t a full success. At this point I’m just glad to know that there are options in case that will be the case.
When I mentioned shouldn’t I wait for 2-3 months scan what he said was we should be proactive and not give this cancer a chance. But he didn’t mention what the plan is as he wants to examine me first. For background I had 28 external radiation, 5 cisplatin, 5 brachy done.
I hope the HRT is doing its job to help you cope w menopause. I initially thought it will be my oncologist who would issue the HRT as he mentioned during my diagnosis that I may need to take it as I’m young. You’ve been very helpful now I’m writing down things I should ask him on my appointment. Sending you much love and prayers for continuous healing. xx
Just to let you know, I had a different experience with the menopause specialist. I was diagnosed with 2b adenocarcinoma. When I visited her for consultation, she mentioned that HRT is not recommended for adenocarcinoma at least at the beginning after treatment as there are evidence that adenocarcinoma specifically might be hormonal driven and HRT might increase slightly the risk for recurrence. Also looking my history I was in the pill for many years which I believe it was a contribution factor to my diagnosis. Instead she prescribed me some pills which can help with the hot flushes and are recommended if you cannot have HRT. I fully believe it’s case is different thus, when you get a consultation make sure you understand any risks or side effects.
Thank you for the concern and for the input. I’m sorry it’s my fault for not mentioning that my cancer is squamous cell and yet it hasn’t responded to external radiation that much hence they’re thinking of doing further treatments will be discuss once he examine me next week to probably see progress a month out after brachytherapy. Thank you again, sending you much love.xx
Mine is squamous cell also. I’m stage 3c1. My scans are due in March but I do feel much better than when I was diagnosed so that’s a good indication.
Good luck in your scans, really hoping for good news for you xx
Were both on the waiting game now. I’m glad to hear you’re feeling much better and I also wish you the best outcome on your scans in March. I’ll have the scan at that time too. Sending you much love and big hugs. You’re not alone. Feel free to message me if you need someone to talk to. xx
Hi Ladies. Hope everyone is getting through one day at a time. That’s what I have been trying to do. Well I had my EUA 2 weeks ago and my discharge. It’s said LLETZ performed. I did speak with the surgeon briefly on the way to the discharge ward and he indicated that if he did need to do do a hysterectomy, he could do a neat job but then said he doesn’t think this will be necessary. I took this a a positive and maybe he thinks my residual is just scar tissue. I have my appointment in clinic for the results later today so it’s big girl pants back on for me today. For anyone who is in the same boat and is booked for an AEU it wasn’t that bad and I was home within a couple of hours of waking up with no pain x
