Cervical cancer

Hi BlackM and welcome to our group.

I’m sorry I wasn’t around to say hello earlier but I am currently on holiday.

I’m sorry you have been told you have cervical cancer but haven’t yet had much information about it-I think we can all recognise that this is a very difficult situation to be in.

At the moment, I would see the priority as being about your own situation and finding out more, I hope you have an mri scan scheduled-this will give some more information for you. I presume you were given a cancer diagnosis on the basis of a biopsy result?

You need more information… you will need need to know the stage of your cancer so that the correct treatment plan can be determined  and then  it will be easier for us to help you. We have experience in the group of different stages of cervical cancer and what they may involve in terms of possible treatment, so I do hope you will be able to come back to us when you know more. I understand it can be very difficult for your partner when you have a cancer diagnosis, and I can understand you wanting to help them process this. We can tell you what it was like for us in this situation, but things will very much depend on you treatment for this, for example if this is early stage and you can have a hysterectomy, or if chemo and radiotherapy will be involved.

My personal advice would be to focus on yourself for now- you are the person diagnosed with cancer. I hope you’ll be able to come back to us when you have some more information.

Sarah xx

Hi Sarah and many thanks for your answer.

PET CT, CT and MRI are done 3 weeks ago, and there was silence since then. I started bleeding again and have contacted my specialist gynecologist nurse to try and get some help and she is surprised that nobody contacted me yet. According to results , cancer ( squamous cell carcinoma) has not spread out of pelvis, but that is the only info I received.  And that someone would contact me with the treatment plan.

Hi again BlackM 

What an awful way to get that information! I’m so sorry that happened to you-it should have been done with a face to face appointment when all your results were collated and a treatment decision made.

I hope you are actually getting a face to face appointment to discuss your treatment plan to give you the opportunity to ask any questions you have-not everything should be done over the phone! 

The good thing is that the scans have confirmed that the cancer has not spread out of the pelvis and squamous cell carcinoma is the most common form of cervical cancer so treatment plans are pretty much standard when the staging is confirmed. All of your results go to an MDT (multidisciplinary team meeting with the various specialists present-oncologist, radiologist, specialist nurse etc). Once the decision on treatment is made, it would be usual to have a face to face meeting with your consultant to discuss the next steps. You would need to sign a consent form for whatever treatment is planned, so hopefully you will be seen soon. 

Sarah xx

Thank you so much. I actually received more info from you and this forum , than the team. Naturally,  I'm concerned . Weirdly enough, I had face to face consult after the biopsy but before any scans were done. Ladies were incredibly lovely but, without scans, no staging or plan could be presented. 

Sorry if I sound paranoid, but, according to the nurse I spoke with, results were ready from last Tuesday and she was there during said  consilium.  

Let's see, hopefully they haven't forgotten about me. 

Many thanks!

I don’t think you sound paranoid at all! It’s a very anxious time for you, and I think we all expect things to happen more quickly than they do.

But as you say, when you did have a face to face there were no scans so therefore no confirmation of stage. When I was diagnosed, from my biopsy but before my scans, I was told I’d be having a radical hysterectomy so mentally prepared myself for that.

Then my scans confirmed surgery wouldn’t be an option as I was stage 2b, so everything changed. It’s best that everything is agreed before anything is communicated to you as a plan, as I found this an extra stress I really didn’t need! 

I hope you in their line of sight now! 

Sarah xx

Hi, 

Just an update. I had my consultation today and it was quite a shock. Over the phone, I received the info that I'm in late stage 1, early stage 2 and today was told that it is actually stage 3 1 C. So, tumor is 6x4, contained in cervix. Not spread to bladder, bowls, liver or anything else but the margins aren't clear and there is 1 lymph node in my pelvis involved.

Operation is not and option and won't be. In 10 days I will be starting with mix of chemo and radio therapy ( external and brachy).

I asked if operation is possible after the mass shrinks and got the answer that the nearby tissues would be too damaged from the radiation for surgery to take place. 

Still don't know what to think. I tried asking questions but some of the answers were incredibly vague and I'll request second opinion.

Trying to look on the bright side here...

Hi BlackM 

I’m sorry you have had the news that your cancer is a higher stage than originally thought-it’s a shock for you to hear this.

As soon as there is a lymphnode involved, the stage automatically becomes 3C unfortunately, and surgery is never an option at this stage. The chemoradiation treatment is standard and lots of us in the group have been through this so hopefully others will be able to share their experiences. I assume you have been told that the treatment will be given with curative intent? Many of the ladies are still doing well following chemoradiation for this stage of cancer, 

One of the consequences of radiotherapy can be damage to nearby organs and tissues, which makes surgery very difficult, which is why it is not usually done following treatment.

I tried surgery after chemoradiation, but that was only because my cancer had recurred, and it was thought it might be possible as my second tumour was only 11mm when it was found compared to 3.8cm at my original diagnosis. An attempted hysterectomy at that point failed due to radiotherapy damage, as my womb and bladder were stuck together and couldn’t be safely separated.

So I was stapled up after open abdominal surgery without anything being removed. I later had more extensive and much more major surgery. (my story is in my profile if you click on my name). 

While you of course might want a second opinion, your tumour is a large one, and surgery would still not be an option even without the lymphnode involvement, so it’s likely that the same treatment you have been offered will be suggested by any other consultant. They are following international guidelines for the treatment of cervical cancer, and the size of the tumour is an important factor even at lower stages. 

The bright side, in my opinion, is that chemoradiation can be very successful and give you a very good outcome but I understand you must be a bit shell shocked finding this out today. It will take a bit of time to get used to and process. 

Do you have any questions I might be able to help you with to get a better understanding of everything? It’s disappointing you only got vague answers from the professionals, but maybe others’ experiences might shed some light on anything you’re unsure of?

Sarah xx

Hi Sarah, 

Once again your answer has been incredibly helpful and gave me a lot of hope.

Yes, I was told that intent is curative. 

I'm happy to undergo any treatment if it will give me a fighting chance.

Thank you for explaining why radio is an option in larger tumors, I had no idea. 

I'd be happy to recieve any comment and insight from forum members and will check your story too.

Wishing you a speedy recovery and, once more, thank you so much️

I think our first thought when we are told we have cervical cancer is get it out of me! I assumed a hysterectomy would be the answer, but it wasn’t at my stage. Typically it’s only possible at stage 1, but even then it can be dependent on tumour size. The risk of spreading the cancer further can be too great. 

The big hitter in treatment is radiotherapy, with the concurrent weekly chemotherapy designed to increase its effectiveness further. Brachytherapy is like the final big hit to blast it away. I’ve often wondered if I’d been able to have brachytherapy would my cancer still have recurred, but try not to look back too much as there’s  no point in wondering! 

I’m just a week short of my 4 year anniversary of successful surgery, so as you start out on treatment, try to keep at the forefront of your mind that the intent is curative. Repeat that to yourself every day as you go through everything. 

Sarah xx