(0)
0 Items £0.00

Stage 1b1 hysterectomy/trachelectomy

34 posts / 0 new
Last post
FeelingTheFear
Stage 1b1 hysterectomy/trachelectomy

Hello ladies 

Thank you for taking the time to read my thread. I've been reading your stories and waited to share mine until I have more information. I'm reaching out for some understanding and shared experience.

Today I got all the info back from my PET-CT, MRI, and LLETZ investigations. I have been staged at 1B1, 21mm x 5mm Grade 2 squamous tumour. I also have CGIN and a SMILE lesion. I'm 36, married, no kids.

The surgeon has said he will attempt a trachelectomy if fertility preservation is important to me. But that the best chance of cure is the hysterectomy, especially given I have CGIN and SMILE as well as CIN3 and cancer.

He also advised conception and pregnancy would bring with it its own risks and complications and I need to decide based on the strength of my urge for a family.

Emotionally I just feel quite sorry for myself, though in my rational mind I am glad that my cancer has been caught at a stage where I can be treated.

Thanks for listening, and I wish everybody here the very best in their journeys x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

rufus

Hi FeelingTheFear,

Sorry that you've found yourself in this club.  It sounds like you have had a tough ride so far.  
Its understandable to feel sorry for yourself and/or angry. I think we have all been there!  Its a rollercoaster of emotions.  
Decades ago, when I had a tough choice to make, a wise lady said to me 'whatever you choose to do will be the right decision for you, make it and don't look back'. I will remember it forever. 
I have found this site invaluable for talking to people who really understand how it feels. 

Be gentle with yourself.

Xx

Lletz under GA on 19/3/20, mri on 21/3, Results cc: stage 1b no sign of lymph involvement. 18/4/20 Radical hysterectomy with lymph node removal 6/5/20 Histology shows microscopic Involvement 2 nodes. Moved to stage 3c. Chemo rads completed 10/7/20 Brachy 14/7 Done!

FeelingTheFear

 Hi Rufus

Thank you for replying to my post, and those are very wise words indeed. As with so many things in life it feels like there isnt a clear choice, as either way has risks and benefits. I feel so sad that I wouldnt be able to start a family with my husband, who I love so much. He says the most important thing is to give myself the best chance of good health for the longterm. I guess so. 

I've followed your threads and our journeys seem very similar. I know when you got your staging you were really relieved and I really admire your positivity! How is your recovery coming along? Did you have open or laparoscopic surgery? 

All the best x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

rufus

Hi FeelingTheFear,

I do feel for you as it must be a horrible choice to be presented with. My sister chose not to have children based on our mother's battle with cancer.  I am sure she didn't make the decision lightly but I know she has a wonderful lifestyle and is an amazing auntie to lots of nieces and nephews.  
I had open surgery 12 days ago and I am recovering well. I have a stupid urge to stretch and a healing itch on my scar but other than that I am mainly embracing books and boxed sets while I rest. 
The whole cancer diagnosis hits you full on to start with and then you process it and it gets easier. It becomes a series of obstacles to get over.  
You will get through this and having a loving relationship really helps. 
Big hugs. Xx

Lletz under GA on 19/3/20, mri on 21/3, Results cc: stage 1b no sign of lymph involvement. 18/4/20 Radical hysterectomy with lymph node removal 6/5/20 Histology shows microscopic Involvement 2 nodes. Moved to stage 3c. Chemo rads completed 10/7/20 Brachy 14/7 Done!

FeelingTheFear

Hello, thanks again for your words of encouragement. They are recommending open surgery for me too. Its reassuring to hear that you have been through it and are recovering safe and well at home. Well done! You must be feeling very proud that you've got through it and are on your road to recovery now x

The whirlwind didnt stop as I was asked to attend pre op assessment TODAY, despite only getting my suggested treatment options yesterday. I had a wobble in the pre op where the reality of what is happening all got very real. So many leaflets. None of them what anyone would ever want to read!

They are going ahead on the assumption I'll have radical hysterectomy although they did say I can choose the trachelectomy. I'm feeling very afraid of everything, and thinking to go along with their recommendation if it's going to make this situation go away. I just cant imagine how I'll keep a grip on my panic when I have to stay in hospital by myself. I am trying mindfulness meditations but in recent weeks I have found it hard to control the physical symptoms of my anxiety, e.g. shivering, nausea, sleeplessness. As you say, it is perhaps something that will ease off with time.

I really appreciate your kind words, thank you so much x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

rufus

Hi FeelingTheFear,

I hope you realise that it's ok to wobble. It's a biggie and it takes time to process.
I would be really worried about you going along with the radical hysterectomy because you feel you have to. It needs to be your decision even if it does come back to rad hyst.  This is your choice to make. Are they able to perform trachelectomy confidently at your hospital?  Have they offered another hospital where they specialise?    A couple of weeks to make an informed decision is your right. Please don't feel pressured -it is still your body. 

Take care of yourselves. 
Big hugs

Xx

Lletz under GA on 19/3/20, mri on 21/3, Results cc: stage 1b no sign of lymph involvement. 18/4/20 Radical hysterectomy with lymph node removal 6/5/20 Histology shows microscopic Involvement 2 nodes. Moved to stage 3c. Chemo rads completed 10/7/20 Brachy 14/7 Done!

LaurieBeth

Definitely be sure to weigh all of your options carefully and talk to everyone. I think that is the only way you can move forward with confidence and calm. I am 12 days out from an open radical hysterectomy myself and am feeling the fear of having to go in all alone. But I have made a choice to just go in like a damn super hero and face it. I have faith in my surgeon and I know the hospital will take care of me. But it is all still overwhelming to me some days and hours--feels like this can't possibly be my life. We will be close together in this whatever you choose, so hopefully I will have some insights. 

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

FeelingTheFear

Hi rufus and lauriebeth,

Thanks so much for your messages. Its hugely comforting and reassuring and kind of you, and it means even more as I know you're going through the same sorts of challenges and yet still making time to help a stranger on the internet :-) thank you x

I was able to speak to my surgeon again today on the phone. He has done lots of trach and is happy to do it if it's what I want. If it wasnt for the CGIN and SMILE lesion then he would be advising to do the trach, but because of these types of cells apparently have a way of sneaking into the uterus where they cant be screened, it is a danger for recurrence. That terrifies me. More than anything I want to live and be healthy.

I have until at least wednesday to confirm my decision. I feel more in control of my emotions today which is good.

There has been so much information and emotions in the last 48hr! Hopefully have a good dinner tonight and a proper sleep :-) 

Lauriebeth I'm sorry you will be going to hospital on your own, that's so hard. They also want me there, alone, 48hr before surgery, and I wont be allowed to see anyone until I get out. I like your attitude about being a super hero! I hope I can find this within myself. I'm sure it will not be as awful in hospital as I imagine. It's just something we will somehow get through, just like rufus has xx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

LaurieBeth

Absolutely. I have beem doing a lot if interesting reading on the difference between pain and suffering. Pain is the physical sensations our bodies ceel. Suffering is the mental anguish we associate with the pain. In this 10 days I have left before RH I am really going to work on my breathing and positive vizualization to try to shut down the suffering before and after surgery and to recognize the pain as what it is--my body's reaction to a major surgery--instead of something to associate with all sorts of emotions. I have also asked a couple of dear friends to make me playlists of songs. I plan to listen to those playlists before surgery and after to what degree I am able to feel less alone and to take my mind to other places. I know stress and anxiety are only going to impede my body's ability to heal and face whatever may come next after surgery, so I am trying to summon positivity and strength.

FeelingtheFear, reading your words, it seems to me that you already have a gut feeling about which surgery you want and what you are the most worried about. I won't put words into your mouth, but would just say to follow that feeling. Women's instinct is a powerful gift in a time like this. Stay strong, lady. We have got this. All of us.

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

FeelingTheFear

Good morning lauriebeth and thank you for your reply, you sound strong, collected and together. I really admire the approach you're taking and it will surely stand you in great stead. Please, if you should find any articles or websites that have helped you in preparation and acceptance of the road ahead, I would really appreciate reading them. I am making my way through the muddle but any clues or pointers you've seen along the road would mean so much to me.

Apologies that this is a long post, but I guess I am kind of journaling my thought processes to help me work them through. For my own benefit really. I dont want to record these on paper and have it lying around the house for me or anyone else to stumble upon one day.

Before Wednesday, they had said I was borderline 1a2, with only squamous and no glandular involvement. We were talking about possibly a cone biopsy or worst case trach. So the call on wednesday to say I had clear scans but CGIN and this SMILE lesion (even my CNS doesnt know what the last one is), and best treatment outcome is RH, came as a bit of a blow. I still dont know how they can tell me 2wk ago that there was no glandular and now there is - I will ask my CNS. Did the gynae I saw first not know how to read the report? Did they go back and check the specimen in more detail while I was having my scans? 

I've no idea and I guess to be honest it doesnt matter. The chips fall where and when they fall!

Lauriebeth you're right that in the last 24hr or so I am starting to process that it's really cancer and it really does need sorting. Because I've had no symptoms it's hard for me to believe there is really anything wrong - I found myself having ridiculous thoughts that maybe they got my sample mixed up? It's all a mistake? I know this is denial talking.

Then this business of can I have laparoscopic surgery, can I keep my uterus, dont take all my lymph nodes I dont want lymphoedema, why do I have to stay in hospital so long, this is the bargaining stage.

In all of this, my anchor is the love I have for my husband. I want to spare him, both of us really, the pain (suffering!) and uncertainty and dread that cancer has brought us already. We had a happy and fulfilling (childless) life before this came along, and if I am healthy, I believe we can have more good times again. To choose to preserve my fertility, the road looks uncertain and fraught with risks of all kinds, to me and my unborn child. Could we bear being unable to conceive, or worse, unable to carry to term, all the while with what feels like a ticking time bomb of recurrence inside me? Worse still, if the trach margins were inadequate then what strain would further treatment bring, knowing that I had wilfully declined the option of the best surgical cure? Could I live with myself for taking that risk? 

I am starting to see I have been given the chance to catch this cancer relatively early, albeit at the price of my fertility. It could have been so easy for me not to have that smear test, fortunately right before the NHS closed down screening. I need to be grateful for this opportunity for a potential surgical cure which sadly many of us havent had. And increasingly my instinct is to protect and fight for the happy life I had, than gamble on one I could have that may be fraught with more fear and disappointment.

I keep reflecting on Rufus' wise words: whatever decision you make will be the right one. Make it, and dont look back.

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

rufus

Hi FeelingTheFear and LaurieBeth

Thinking of you both.  The op is doable and the processing continues afterwards.  There are wellbeing services offered by McMillan which are apparently really good to help you find your 'new normal' after treatment.  My friend found it really helpful to access these after she had breast cancer and has advised me to do the same. 
Much love
Xx

Lletz under GA on 19/3/20, mri on 21/3, Results cc: stage 1b no sign of lymph involvement. 18/4/20 Radical hysterectomy with lymph node removal 6/5/20 Histology shows microscopic Involvement 2 nodes. Moved to stage 3c. Chemo rads completed 10/7/20 Brachy 14/7 Done!

FeelingTheFear

Good morning rufus :-)

I would be grateful if you can share any insight from your recovery, or any tips on how to prepare, items you have found helpful, websites or articles, etc

I know everybody's journey is personal and private, and I respect if you prefer not to.

I am overwhelmed by the emotion of the diagnosis and longterm implications and trying to focus on the short term practicalities of getting through the treatment instead. I know this means I may get hit with the rest of it like a truck after surgery. But it's the only way I think I will survive the next couple of weeks.

Thank you x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

LaurieBeth

Yes! One day at a time for all of us. I found that at the beginning I needed to do a ton of research on cervical cancer and survival rates and treatments, but then I just had to tell myself to stop at some point. I am terrified of sexual side effects and general quality of life. My children and I are avid travelers and hikers and bikers and swimmers. My life is full and physical and wonderful. Something like lympodema wouls devastate. But, I just have to shut that down. Anxiety is the fear of what might happen, and it is onky helpful if it leads to concrete action. Once I stopped rhe CC research, I did a lot of reading on facing cancer with positivity and also on eating hwalthier. Also on coping with anxiety and mindfullness. It has taken time and has already been a mental journey before I face rhe phsical one. Feelingthefear, you sound like you are doing great. Keep up with the long posts since they seem to be helping. We have got this!

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

rufus

Hi FeelingTheFear,

I think you are doing brilliantly at facing the issues head on.  I have found this forum really helpful because so many ladies share their experiences and thoughts.  Other than exploring how accurate mri was, I did not read about cc generally.  My consultant printed out a study of outcomes from laparoscopic and open surgery that made me choose open surgery.  

I would say that you have the right approach in taking each step at a time. I found that working until the day before my op helped to keep me busy and gave me downtime from my thoughts.  On discharge after my op the consultant signed me off for 8 weeks but said I could work from home if I wanted to.  He then said 'but I want you to take some time to process what has happened to you'. My friend who had breast cancer has also said that she found that she delt with treatment first and then afterwards focused on the emotional side.

I felt better once I had packed a hospital bag.   You need to know that your stomach swells up post op and you need to take bigger pants and things without a waistband with you to hospital.  I was told to get nightshirts but I settled for big pj's and short sets.  I am aching this morning from either wearing my joggers or gardening yesterday (I'm 2 weeks post op).  

The other bit of advice I would pass on is that peppermint tea and prune juice are brilliant for helping with wind and constipation.  

Big hugs

Xx

Lletz under GA on 19/3/20, mri on 21/3, Results cc: stage 1b no sign of lymph involvement. 18/4/20 Radical hysterectomy with lymph node removal 6/5/20 Histology shows microscopic Involvement 2 nodes. Moved to stage 3c. Chemo rads completed 10/7/20 Brachy 14/7 Done!

FeelingTheFear

Hello again ladies,

Thank you for your words of encouragement! I was googling a lot before but I know now that it's too triggering for my anxiety. I spent half an hour today just focusing on breathing which recently I had found irritating to do and didnt really believe it was going to make me feel better. To my surprise the anxious knot in my tummy has eased off. I guess its working!

Rufus, my consultant also gave me details of the LACC study 2019 to help me decide laparoscopic or open, I did read that and think, ok then it's a more uncomfortable recovery but the trade off is the peace of mind to know you did all you can to get the best longterm outcome. Peace of mind... what a luxury! 

Lauriebeth, lymphoedema is terrifying me. I like to travel a lot and my job involves walking around all day approx 12-15000 steps, losing the ability to do these things would in all honesty maybe hit me harder than my fertility. I tried to speak to my CNS about these concerns and she is telling me to take a step back and worry about the little hurdles to overcome in the short term rather than the "what ifs" of post treatment. I know in my heart it makes sense but my head is running wild, because of stuff I read in my "research". Not helpful!

Rufus, I'm absolutely so impressed that you put on leggings and gardened yesterday!!! Wow! My GP has said my vision of how recovery will be, is not half as bad as the reality. I am baffled as to how I will get myself into/out of bed or a chair, get up/off the toilet, get a cup of out the top shelf of cupboard etc... can you tell me how doable are these kinds of things once you got home from hospital?

Annoyingly I cant work because the private hospital where my NHS surgery is taking place insists I cannot leave the house for 2wk before my op. So no nice walk in the park, and definitely no work, so just sitting here on my own using up what little paid sick leave I have and winding myself up about things on google! Decided to get a bit more practical yesterday and like you said Rufus I began thinking about my hospital bag

I ordered some full brief knickers in one dress size up from normal, in your experience should I have got some 2 sizes up? More? Was it ok to get a maxidress or nightie on over your head, or do I need buttons? 

Thank you both again for your kindness and compassion which has comforted me so much xx have a peaceful day xx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

rufus

Hi FeelingTheFear,  

I found moving to the practical preparation helped me. I was advised to buy a travel kettle so I wasn't lifting a heavy kettle but I haven't had a problem with this. I just don't boil too much water at a time. I have found that pans are a bit of a problem and I haven't done any 'proper' cooking since I got out (my husband normally cooks a main meal).  I have not been able to eat much at a time due to swelling so I have been eating about half my regular portions.  
In terms of dressing and self care,  you can do most things, although a bit slower than usual. Putting things over your head are not a problem really. I found that I needed help getting out of the shower and bending and twisting to put it on (crappy shower over the bath though) for the first week. All ok this week though. I only washed my hair once in the first week too (I just tied it up, it is quite long). I got my 'lockdown haircut' last week to make it easier.  
I have found reaching for things ok as long as they are not too heavy. Hoovering is a complete no for the time being. 
Getting up from a chair is ok you find yourself using your arms a lot to support. Getting into and out of bed is trickier and when I needed help last week I found it most helpful for someone to offer their arm that I can pull against. It is still a bit unladylike getting out of bed/off the sofa but I'm not needing help to do it. 
With clothing, I have gone one size up and that has been enough.  Loose fitting styles are more comfortable.  
I have found that although I don't generally use painkillers in normal life, I have taken what I have been given. 
I found an extra pillow to support my stomach in bed was really useful. 
It is surprising how much you can do. It just takes longer.  
It is doable. The wait is worse than the aftermath. You are nearly there. 
Much love

Xx

Lletz under GA on 19/3/20, mri on 21/3, Results cc: stage 1b no sign of lymph involvement. 18/4/20 Radical hysterectomy with lymph node removal 6/5/20 Histology shows microscopic Involvement 2 nodes. Moved to stage 3c. Chemo rads completed 10/7/20 Brachy 14/7 Done!

FeelingTheFear

Hello rufus 

Thank you for taking the time to describe the recovery process, which I must say it sounds like you are doing a brilliant job! I did not imagine that I could be this independent at two weeks post surgery. That has helped to alleviate some of my fears though of course I know different people respond differently, it has been a big reassurance.

Are you having to do the fragmin injections? I  hate needles but when I asked my CNS she brushed me off with oh that's the tiniest hurdle you'll be overcoming dont give that a second thought. 

Both you and lauriebeth have been inspirational in your approach to dealing with this and I'm so grateful to see this positivity and take it as my example :-) x thank you x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

LaurieBeth

Rufus, this was so much helpful information! I am only 9 days from surgery now and am in the final stages of trying to get my house cleaned, my children packed to go to grandparents, hospital bag packed, etc. I have bought some loose fitting dresses and some larger pajama pants for the ovcasion but I have been pretty clueless about what I will or will not be able to do. I kind of envision myself as a blob unable to move or do anything at all. Hearing that you were gardening at week 2, albiet slowly and with some after effects, is inspiring to me. Now I also feel like I know more what to pack for the hospital.

Tomorrow morning at 9 I have a pre-op appointment at my oncologist's office. I am trying to stay in a positive frame of mind for it and mot get triggered. The day I went for my first appointment there was seriously one of rhe worst and most stressful days of my life. Reminding myself that i just need to go, sign the forms, ask some questions and then come home and focus on my kids and on having a good day. A friend of mine is meeting us at a park near our home to take some pictures of the kids and me for Mother's Day and another friend is dropping by to cut my daughter's hair (in the yard, everyone in masks). It will also be another beautiful day of weather in the American south. So, the appointment is just details and then on with life.

FeelingtheFear, when is your surgery scheduled?

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

rufus

Hi FeelingTheFear and LaurieBeth,

The fragamin injections are real. I had them in hospital but once the pharmacist told me that you could have tablets instead I convinced one consultant to let me have the tablets for going home. The other consultant was insistent that I stuck with injections and wouldn't have moved. They are doable I'm sure, but I managed to dodge bringing them home. If you are stuck with them, they will show you how to do them in the hospital and you can watch the nurses and get them to talk you through it.  
LaurieBeth, the pre op is ok.  It's different from other appointments you will have had recently because it's calm and nothing changes.  They know what they are doing now and there are no more 'results' to process. I don't know if I've expressed that clearly but I left mine reassured that they were literally just getting details and last minute bloods in preparation.  It is a chance to ask those questions you might have floating around but forget to ask.  
One thing I did forget to say is that laughing hurts for the first week. My husband makes me laugh all the time and was limited to counting the number of things he hadn't said to me in the first week eg on the way home from the hospital "that's 8 things I haven't said". I had to avoid all funny things on the internet/ tv.  That's only the first week though!  
I am glad you are reassured,  I was also imagining that It would be much worse than it was.  Every day it gets a bit easier.  
Big hugs. Xx

Lletz under GA on 19/3/20, mri on 21/3, Results cc: stage 1b no sign of lymph involvement. 18/4/20 Radical hysterectomy with lymph node removal 6/5/20 Histology shows microscopic Involvement 2 nodes. Moved to stage 3c. Chemo rads completed 10/7/20 Brachy 14/7 Done!

FeelingTheFear

Hello ladies,

Lauriebeth wishing you a smooth and straightforward pre op! I had mine the day after diagnosis confirmed, even though I hadnt decided on the details of the surgery, because I have to stay in for 14 days prior to surgery. So this is day 4, and I'm expecting a phone call at the end of this week to confirm the date, around mid may apparently.

I feel so anxious/panicky just thinking about it today, but at the same time I am in limbo and getting through this is the only way to make it to the other side of surgery and hopefully the all clear on the lymph and focusing on recovery. So anxious about the lymph results. Cancer really is the gift that just keeps giving >:-|

My pre op was a bit triggering in that all hospitals are for me, but it was as rufus has described, so straight forward. Here is some chlorhexidine to prep your body with the night before, here are some carb drinks for the morning before, tick this list if you have any pre existing conditions, take all these leaflets home to read, let's have some blood and some swabs for MRSA, hows your blood pressure and BMI... it was all very matter of fact, routine stuff. 

Rufus, what a blessing you managed to get out of the fragmin injections. It's a psychological thing for me as I think it will just further hammer it home that something is very wrong with me if I have to do this every day. I know its nothing to do with cancer and is just to prevent complications from the surgery but my rational and my emotional responses arent nearly lining up! Similarly I hope I can get that catheter out ASAP and pee normally as that will be another psychologically difficult thing to get my head around. Though from what I read on here the catheter is fine so long as you dont end up with UTI.

Possibly I'm back in denial and these things like injections and tubes are frighteningly real.

I have been worrying about what to do if I need to cough, sneeze, laugh! Even after LLETZ I was so nervous to do these things. I'm glad that in week 2 it has been ok. Cant thank you enough for sharing your journey as like lauriebeth I assumed I would be essentially an immovable blob of pain and wires and obviously there is life and laughter after the procedure! 

Lots of love to you both x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

rufus

Hi ladies,

I was unhappy about the idea of the catheter and when I had one before (c-section) I was really unhappy about it.  I don't know if they have got better or if it's just a different operation but it really is not a problem. Because you are given plenty of pain relief (the morphine button push thing ect) and you need to rest, you really don't struggle with it. Once it comes out and you are going to the loo you realise why it was there. Every wee is like two because you go and then wait then have a second one.  It is a case of deep breathing and consciously relaxing to let your body do its thing. I've not suffered a uti. I think you are more at risk of one if it comes out too soon. I promise it is ok and nothing to worry about. 
Big hugs

xx

Lletz under GA on 19/3/20, mri on 21/3, Results cc: stage 1b no sign of lymph involvement. 18/4/20 Radical hysterectomy with lymph node removal 6/5/20 Histology shows microscopic Involvement 2 nodes. Moved to stage 3c. Chemo rads completed 10/7/20 Brachy 14/7 Done!

LaurieBeth

Today at my preop (which was really an easy appointment for sure) they told me they are going to have me remove my own catheter after seven days. I burst out laughing. i don't know why, but it just struck me as so ridiculous. Friday i have to have my blood taken and a COVID test INSIDE my car! And now I will be doing catheter self-removal...who knew the adventures of cancer.

They took a urine sample today and said they normally do that with the hospital labs, but that can't be done in a car. I replied that if I had to hang my head out the window and my arm out, I might as well hang my ass out, too. That made rhe nurses and me laugh a lot. My oncologist even popped in and answered some questions I had about hormonal side effects. All in all I left feeling optimistic and ready to get this behind me! This time next week it will be surgery eve. Finally!

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

rufus

I am glad it went well, LaurieBeth.  One step closer to fixed. 
Big hugs. Xx

Lletz under GA on 19/3/20, mri on 21/3, Results cc: stage 1b no sign of lymph involvement. 18/4/20 Radical hysterectomy with lymph node removal 6/5/20 Histology shows microscopic Involvement 2 nodes. Moved to stage 3c. Chemo rads completed 10/7/20 Brachy 14/7 Done!

FeelingTheFear

Hello ladies 

Thank you for the reassurance about the catheter rufus :-)

Lauriebeth I really admire your positivity and sense of humour about the whole thing! You crack me up!

Felt a bit down yesterday/today, I am going over and over in my mind about the lymphadenectomy and whether I'll need more treatment after the surgery. Called my CNS and she said I should focus on each little hurdle, one day at a time. I know this makes sense logically but my mind is in catastrophe mode. 

The hospital referred me to complementary therapist and they are putting together some aromatherapy inhaler which is supposed to help me relax and get to sleep, which is both thoughtful and kind of them :-) 

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

FeelingTheFear

Hello rufus and lauriebeth 

How are you both feeling? Hope you are well! 

I've had an indication that surgery will be on either 14th or 15th May, it will be confirmed later on today.

It's all so quick. I got really triggered when I took the phone call and my anxiety went through the roof. I know in my rational mind that this is a positive step on the road to putting this behind me! I just have such an irrational fear of treatment. Probably because I havent been in hospital or had any sort of treatment for any kind of illness before. I'm sure I'm imagining it worse than it is. 

I keep re-reading your posts rufus which are calming me a lot. Thank you so much xxxx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

LaurieBeth

Feelingthefear

I will probably still be in the hospital when you are going in for your RH! Mine is the 12th, so we are now officially in this together. For the record, I am more terrified of the appointment when I get my pathology than I am the actual surgery. I, too, cannot stop thinking about lymph nodes. I have taken to having conversations with mine, and I wish I were joking. But there is just no positive to come from agonizing about it, so when those thoughts come up I just try to take a walk or bike ride or draw something--anything at all to redirect my thinking. The surgery is our first step. And there is so much research to support better and faster healing for people who are positive and less stressed and anxious.  So that has to be our first goal. I am still working on deep breathing and on remembering that the pain I will feel from surgery is just that, pain surgery. Not life long pain and not a sign that I will never feel well again. And worrying about cancer staging and treatment when I wake up from surgery is going to do nothing positive for my body. I have started vizualizing waking up calm and well cared for and positive. my oncologist/surgeon really helped by sitting with me Monday. He told me tjat he thinks the surgery will not be as bad as I am thinking. He said the first 72 hours will be pretty awful but that I will have an epidural for part of it, and that we will control the pain after that.  He said that since I am fit and eat well and am not a smoker or big drinker, I am already poised for a good recovery. This make it seem very doable. This time next week, surgery will be behind me. I will be recovering in the hospital on some good drugs. 

I think the secret really is to stay in each day. Hard at times but i think we can both do it. We are almost there!

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

rufus

Hi Ladies,

Hold on to those positive thoughts!  You will soon be through this waiting stage and focused on recovery.  You will find that the hospital staff are amazing and understand your fears.  I like the aromatherapy idea. A friend today suggested hypnotherapy as an option for dealing with fears (I am also very nervous of needles). Of all the things that helped me, deep breathing is the main weapon.  I have found loosing myself in a book has really helped as well (I don't have time to do this enough usually). I have had my money's worth from Amazon Unlimited this month!  
It's really cool that you will be a few days apart with your ops. Another reason why this site is amazingly helpful.  
Much love and virtual hugs

Xx

Lletz under GA on 19/3/20, mri on 21/3, Results cc: stage 1b no sign of lymph involvement. 18/4/20 Radical hysterectomy with lymph node removal 6/5/20 Histology shows microscopic Involvement 2 nodes. Moved to stage 3c. Chemo rads completed 10/7/20 Brachy 14/7 Done!

FeelingTheFear

Hello ladies,

Thank you for your messages, you are both helping me feel less alone and I'm taking courage and positivity from you when I am feeling afraid. I really appreciate it so much!

Last chat with consultant yesterday and he did a great job at calming me down. I do feel like he knows what he is talking about and he is taking into consideration my concerns. I told him about my terror over lymph invasion and he was as reassuring as he can be. He repeated what we already knew about my scans, I think I just needed to hear it again. They are optimistic.

Surgery is booked for may 14th so probably time to get my hospital bag together as I'll be admitted on the 12th.

I have started my period today which is a joke tbh, thank you mother nature. Hope it all clears up by surgery time next week though probably it doesnt make any difference to them. I hate period pains and they make me anxious for the pain I will have after surgery. It is a bit strange thinking this will be the last time. It's a bit upsetting. I wish I didnt have my period now.

Deep breathing got me through all the overwhelming things so far and I will try to do the same going forward. Love the idea of your visualization as well Lauriebeth. I have also read that anxious stressed patients recover more slowly and experience more pain. I just keep telling myself that the medical team are doing this surgery to help me. The dr wants the best for me. They are all such clever people. And everyone so far has been very kind. Including you both!

xXx have a lovely day xXx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

LaurieBeth

Tomorrow I go for my drive through COVID testing and bloodwork. That is my last appointment until I go early Tuesday morning for my surgery. I am a little worried after having my brain tickled and then blood taken that I might not feel great to drive, so a dear friend who I know has been appropriately quarantined is driving me. That will make it a lot more fun and funny. The moon is gorgeous and full and I feel peaceful. Sending everyone lots of good thoughts tonight.

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

LaurieBeth

Ladies. That COVID "swab" is no joke. I think I need a therapist to recover from it! But my final step before surgery is accomplished, assuming it comes back negative!

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

FeelingTheFear

Hi lauriebeth,

OMG! What happened?! I've got to have it twice - apparently the test they are using gives a 10% false negative rate

Is it over quickly? 

All the best x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

LaurieBeth

You will be fine. I am being dramatic. It is just very deep and very uncomfortable. But it is over very quickly. Hard to believe this time next week I will be home ad recovering from surgery!

 

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

FeelingTheFear

Hi Lauriebeth 

What an encouraging thought. You are on your way to healing and release from this anticipation! X

I had a difficult day yesterday, I was overwhelmed and suffering from painful and irrational thoughts that were distressing me. 

Today I am working on my mindfulness, breathing exercises and restoring a sense of calm acceptance. I feel much more grounded.

I am going to step up practical preparations for my surgery and my return home afterwards. 

Rufus, I hope you are still recovering well and things continue becoming easier x

Much love and positivity to you both xXx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

rufus

Hi ladies,

I'm doing fine thank you. My current project is cutting down painkillers after I picked up a full laundry basket and realised that a bit of an ache is a good reminder not to get ahead of myself!  
I will be thinking of you both on your countdowns and ops. You are both strong and you have got this. 
Much love

Xx

Lletz under GA on 19/3/20, mri on 21/3, Results cc: stage 1b no sign of lymph involvement. 18/4/20 Radical hysterectomy with lymph node removal 6/5/20 Histology shows microscopic Involvement 2 nodes. Moved to stage 3c. Chemo rads completed 10/7/20 Brachy 14/7 Done!

More Information

Cervical cancer