Hello ladies and thank you for all your posts, this forum was a great help for me during the last days of stress and fear. One month ago I was diagnosed with highly differentiated squamous cell carcinoma of the cervix, following my 12 month smear thinprep test, a colposcopy where four biopsies were taken and two MRIs.
Four days ago I had cold knife cone biopsy under GA and my gyn-oncologist mentioned that this is the procedure which will confirm if all cancerous cell are removed or I will be having a radical hysterectomy with lymph nodes removal in the near future.
I asked for a radical hysterectomy before the cold knife conization since I am 50 and I won’t be having kids, but the doctor told me that the right procedure is to have a cone biopsy which many times is the cure and it’s not done only for diagnostic reasons, it can remove all cancerous area. In fact he told me that maybe it would be better to have a second cone biopsy, if needed, than having a radical hysterectomy.
I live in Greece and maybe the protocol here is different (I also apologize for my not so good english), but this protocol was confirmed by two doctors I visited after I got my diagnosis. Here you don’t get a referral, you may visit a public hospital or if you have private insurance, a private hospital and choose your doctor on your own, I did the last because the waiting time in public hospitals is huge.
I have no idea at which stage I am, my doctor only said that I am at an early stage. My MRIs showed an area at the cervix with 0.5 mm depth the most which is affected but didn’t mentioned anything about a tumor.
Now I am waiting for the results of the biopsy and I will visit doctor’s office in one month for my post surgery screening.
I would be more than grateful if you could give me any advice on what to ask the doctor after my biopsy results. Should I insist to have a radical hysterectomy? I am so scared that even if the cancerous cells are removed now, cancer will reoccur in the future. I am also under immunosuppressants because I suffer from rhupus (a light form of rheumatoid arthritis and lupus combined) which I am sure played a huge role in the development of cancerous cells.
Thank you so much in advance!
Hi Ekali and welcome
I’m not qualified to say whether or not a radical hysterectomy (RH) would be the way to go but having had one in 2017 I would say it’s important to be aware that it’s a big operation with the risk of side effects and not something to be undertaken without very good reason. My tumour measured 3.8cm and I was in no way suitable for anything less than a RH.
A RH involves removal of the top part of the vagina, cervix and womb plus surrounding tissue and pelvic lymph nodes:
https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/hysterectomy
Be aware that removal of the lymph nodes can lead to lymphoedema which is incurable and, for some including myself, debilitating despite close attention to self management I was also especially unlucky in that I had total urinary retention following my RH and had to rely on catheters to empty my bladdder; I did eventually regain fairly normal bladder function but it took many months and at one point my urologist suggested I might have to rely on catheters for life! I don’t wish to unduly scare you about possible side effects, and as I say it seems I was especially unlucky, but it’s as well to be aware what can happen and to take everything into account before asking/consenting to a RH.
In terms of what to ask your doctor after your biopsy results I would suggest asking what he/she considers your risk in percentage terms for recurrence to be, given you are on immunosuppressants. Whatever happens next establish what medical support/follow-up checks you can expect in future.
x
Jazza thank you so much for your reply, your advice was very helpful!
I got my biopsy results two days ago, stage 1a2 and I am planned for a radical hysterectomy next Thursday. The cone biopsy removed all cancerous part completely, but my margins were not clear at all parts, still CIN3 at one side. The cancerous part was invasive up to 5mm deep and cancerous cells spread horizontally up to 24mm. The cancerous cells were not spread beyond the cervix.
My doctor explained that I will be having a modified radical hysterectomy with nodes removal-biopsy. Modified means that a smaller part of the parametric tissues is removed. My surgery will be laparoscopic, robotic assisted but if needed during the operation, will be turned to abdominal.
I am very scared for the operation and also because of my autoimmune condition, I am having a huge flare due to stress and worry.
Any additional advice from all, would be more than appreciated!
Hi Ekali
The prospect of a RH is very daunting and we’re all different what helps us cope, but for me it was keeping busy to stave off intrusive thoughts. It’s understandable that you are particularly concerned because of your autoimmune condition, but you wouldn’t have been offered a RH if your medical team thought you weren’t fit enough. However, I think it’s probably best to keep them fully informed and I would suggest that you let them know about your flare up before next Thursday
I started a heavy cold just two days before my op and thought it might have to be postponed, but my medical team decided to go ahead because the size of my tumour was only 0.2 cm short of being inoperable plus there was concern that spread to my lymph nodes could be imminent.
Best wishes
x
Hi Ekali,
From the biopsy I would suggest to ask them the stage. And the size of the tumour.
In UK before staging they do an MRI and PET scan to make sure that there is no metastasis and they propose radical hysterectomy for stages up to 2a.
For bigger stages from 2b onwards they are doing concurrent chemo radiotherapy and brachytherapy.
I would suggest to confirm the stage before you proceed with a treatment because if you have a hysterectomy without clear margins you will need to do undertake the chemo radiation treatment.
I hope all the best with the results.
Be strong!
Xxx
Hello and thank you so much for your replies! This forum is very comforting and I have read all posts about hysterectomy experiences.
My hysterectomy is rescheduled for Friday the 20, which is in 2 days and my fear for the operation is enormous! I will keep you informed about how everything went!
Thank you again for your support, much appreciated! xxx
Hi Ekali,
How are you doing after your op? I’m scheduled for mine in a few weeks, just the thought of surgery makes me feel ill and I had a section 5 years ago
Hello and thank you all so much!
Apologies for the delayed reply, but now I am well enough and able to tell you the whole story.
I had the operation which was laparoscopic, robotically assisted. The operation was much more easy than I thought and the doctor explained me that everything went as expected. It lasted 3.5 hours and a total of 4.5 hours with the preparation and the time needed to wake me up. I have 4 small incisions, I didn’t have any pain at all afterwards, I wasn’t feeling nauseous, they immediately put me under pain medication, medication for nausea, antibiotics and anti inflammatory meds intravenously. I wasn’t feeling sleepy either. I had a bladder catheter which was removed 5 hours after they transferred me to my room and they immediately helped me to stand, walk and pass urine so that my bladder wouldn’t become “lazy”. They encouraged me to walk and I had a tea at 5 pm and later I had dinner( just chicken).
I wasn’t feeling any pain, the only problem was that my right hip was a little numb, which still is, but less. They explained me that it is because of the position and the nodes that were removed but it’ ll be ok in time. In fact it is much better now.
I was released the next day and I was subscribed oral antibiotics, anticoagulant injections and pain meds to take them if needed. Also I was advised to clean the stitches every day with physiological saline, antiseptic lotion and dress them with a sterile gauze. The stitches will be removed the 15th day post the operation. I could also shower but not bathe. The first 3-4 days at home were the most difficult because I couldn’t move that much and I needed the pain medications. Ι was also feeling very very tired. After the fifth day I started to feel much better and now I feel better every day. I was drinking lots of water and trying to walk into the house, so luckily, I didn’t have any bowel problems, nor any pain from the bowel either. Now, at day 9 post op I think I have candida so I’m calling doctors office tomorrow. This is usual for me after a course of antibiotics, it happens all the time.
However I am feeling much better, almost normal, so I guess the first week after the operation is the most difficult, mostly until days 3-4. But it was much more easy than I expected and the operation was nothing compared to what I thought! They keep you busy when you go to the hospital until they put you to sleep and…voila! the operation is done! In conclusion, it wasn’t as hard as I was afraid it would be and now I am thinking that I was overreacting being so scared before!
So my dear alwaystheweekend, I know it’s not easy not to be scared and worried before the operation, I was very anxious myself, but trust me, it’s not as difficult as you imagine, in fact it’s much easy and it will be over before you know it. Please try not to think about it too much, keep busy doing things that make you happy and believe my word, it all ends the moment you step foot to the hospital.
This forum helped me enormously before the op, all your experiences were giving me courage during this time and I am very grateful for that.
Many hugs and kisses,
Ekali
Hi Ekali, so glad to hear that you’re on the mend so quickly and hope it continues that way.
I will be having abdominal surgery from what I’ve been told. Just want to get it over and done with now, but I have another winter virus to get out of my system, praying for no more before the op. I’ve never had a general anaesthetic so that kind of scares me
