trachelectomy  stories please

 

 

Hi, im new here.

My storey is 

July-aged 28 i went for my second smear test. Results came back abnormal

Late july -went Fo

 

r a colspocy and leep treatment

August-needed more treatment, underwent cone biopsy 

Now 6 weeks later-i have been called back. Im a bit confused as its all a blur but yesterday i heard 'tumour' 'cancer' 'high grade' i really dont 

know and  im devastated. The consultant said its high up in my birth canal. Basicly my choices are either a hysterectomy or trachelectomy .

 

 

i really want more children so will go for the trachelectomy but im so nervous. He said

 

it will be done in liverpool and il have glands removed at the same time.

 

i would especially like to know how long you stayed in hospital, i dont want to leave my

 

daughter i live in wales. And recovery times please. I have an active life.

 

thank you in advance

Best wishes to you all

 

ps chemo or radiotherapy havent been mentioned

 

 

 

 

 

Hi there

I had a Trachelectomy last July. I was in hospital for 5 days… Abit longer than expected as the Anaesthetic didn’t agree with me. It took about 3 weeks to feel ‘ok’ but then 6 weeks before I could go back to work which was phased. Honestly it took a few months to feel ‘normal’ but it didn’t slow me down too much.

I also had lymph nodes removed

Hope this helps? Feel free to PM me.

Emma x

Thanks emma, gosh 5 days in hospital! Ive stressed my worries with the nurse so im hoping if it goes well they wont keep memin longer than i have to. X

I am having the same problem, get my operation this Wednesday. But i haven't decide yet on a tracheostomy or hysterectomy. My surgeon gave me a vibe that a tracheostomy wasn't as good as a hysterectomy. I am meeting with another dr tomorrow for a chat before i decide. I feel ur pain such a big thing to decide so young am only 24.

Im also under the impression that they prefer to do the hysterectomy as its safer in insuring everythjng is removed. But ive read that the

Thrachelectomy (?) Is succesful if the cancer has not spread. Have you had an examination under ga? Im supposed to be having one

So they can have a proper look and see exactly what they are dealing with. This is before any operation.  

Hi everyone.

I’d firstly like to apologize as I haven’t noticed any other males commenting on here so I don’t know if it’s ‘taboo’ although if just one person benefits from this story (with a positive outlook) then I’m glad I decided to comment.

Before I write anything else I just want to begin by saying how incredibly inspirational I have found this page. You are all so strong and I cannot even begin to explain how much respect I have for you all.

In July of this year my 24 year old girlfriend received (after a lot of arguing with more than one physician) her first smear. She only had the one symptom, which was bleeding during sex. The results came back as low to moderate levels of CIN. She was then asked to have another smear a few weeks later as, I’m sure many of you are aware, women under the age of 25 regularly have abnormal cells in the cervix which are there one week and gone the next which is, why I am told, 25 is the age at which they begin routine smears. The second smear came back the same and they said that the results were indicative of early stage cervical cancer. They stated that they wanted to perform LLETZ treatment the following week which they were very positive would remove the cells. Following the treatment she had an MRI which confirmed the cells surpassed the edges of the LLETZ and she was staged 1B1. A week later she attended another hospital is Sutton which apparently would offer them a more detailed image through the use of a new technique involving some form of probe. The doctors seemed unphased by this second MRI and stated they wanted to perform a radical trachelectomy as they wanted to preserve her fertility. They also in the interim ordered a pet scan as the second MRI showed slightly inflamed lymph nodes. This was obviously very worrying for us however the surgeon did note that it is not unusual for lymph nodes to be inflamed following a LLETZ as it is not exactly a delicate treatment. With mixed emotions we left that day. 2 weeks later she had an EUA (which is an exploration under anesthetic for those who don’t know) and when she awoke they told her they were happy with what they saw both during the EUA and the pet scan which we were thrilled with as it meant they could do the trachelectomy.

She had the trachelectomy 3 days ago and was discharged yesterday. They were able to do the operation laproscopically so she bounced back relatively quickly. They removed some lymph nodes during the surgery and the surgeon said he was happy that they did not look inflamed and they were not firm which suggests that the cancer has not spread. We are now waiting for the results from the pathologist who is inspecting the nodes and will hopefully confirm that they got it all next week. We aren’t out of the woods yet but the outlook couldn’t really be any better, which we are so grateful for.

She’s had a lot of wind since the op and a lot of aches and pains as well as some heavy bruising but nothing out of the ordinary. The doctor said she lost a lot of blood during the surgery but she didn’t need a transfusion and her blood pressure returned to normal very quickly. She’s a very healthy girl; she exercises a lot and doesn’t drink to excess and is a non-smoker so everything is in her favor.

The main reason I wanted to share this story is, as like many of you, I knew nothing about this and Jo’s trust and MacMillan were the first places I turned to – I didn’t trust any other sources as too many people think they are doctors these days. The information, support and words of encouragement on here helped us both immensely in dark moments. The main thing I notices is that everyones story differs so much and although I saw many people having radical trachelectomy’s I didn’t come across anyone that had to undergo so much testing before they signed off on it. This was a big worry for me so I hope that anyone else in the same position see’s this and doesn’t mistake the thoroughness of the doctors for doubt.

On one last side-note, there may be girls reading this in a similar position to what my girlfriend was in before her smear. She looked at sites like this when bleeding during sex was outlined as a symptom and I’m ashamed to say I thought she was being ridiculous when she said she was worried about having cancer. The possibility didn’t even register in my mind. If you have any symptoms or any doubts PLEASE see your GP immediately. Maybe your boyfriend is like me and he’s telling you it’s nothing but it really isn’t something that’s worth taking any chances with and we (by we I mean boyfriends, friends and family offering pseudo-medical advice) are not doctors so we are not qualified to tell you what you do or don’t have.

Once more, thank you all so much. You are amazing people and I sincerely wish you each and every one of you the best possible outcome. I have really had my eyes opened these past few months and it has radically changed my outlook on life.

Hi,

Making the decision about the type of surgery you want is indeed a really tough one.  I am 32 and was diagnosed with stage 1B cervical cancer in June 2014. I don't have any children and am due to get married next year, so having children has always been our long term aim.  I opted for the trachelectomy on this basis and also because I understood that the time it would take to recover from this was much quicker.  I had the surgery in August and was in hospital for two days.  Have to say that I bounced back much quicker than I expected, the most painful part for me was the catheter.

Sadly, whilst the lymph nodes were clear, the margins around the tumor were not wide enough and the cancer turns out to be particularly aggressive, therefore i am due to hsvr completion surgery next week, which will be a hysterectomy.

I firmly believe thst there sre no rights or wrongs in this battle, it doesnt seem fair, and it hurts, emotionallly more than physically.

Please try to make your decision based firmly on what is best for you and your family alone.  We were given the option of going away and trying for a baby but decided that the risk if the cancer returning and me leaving that child without a mother was not one we were prepared to take. i want to be alive and healthy in ten years time, twenty years time etc etc. To do this, i have to sacrifice carrying a child, and whilst i'm still getting my head around this, i am comfortable with the basis of our decision.

 

 

Hi there,

What a treat to have a chap writing here, and what a lovely chap too! I am not able to offer any input about trachelectomies, hospital durations or pros and cons of hysterectomy, so all I can do is comment that this seems to be a really useful and practical thread. 

To the best of my knowledge, chemo and radiotherapies tend not to be mentioned until after they have got inside and had a look around. Once that has been done they have a much clearer picture of your individual case. I remember being stunned and disappointed when I was recommended both even after I'd been told they had got it all during my hysterectomy and found not a trace of lymph node involvement, but these things are belt and braces and apparently latest research shows that these therapies have good long-term results. Don't be afraid if they offer it to you post-surgery, and don't be disappointed if they don't. All cases are individual and doctors have more experience than individual patients.

Go Well

Tivoli

Hi,

Firstly I would like to thank you very much for taking the time to post.You are not

the first gent to post but,not many do,so I hope this will encourage more in the future.

It's good to know that there are lots of lovely men out there helping us through this.

Also,its a very lonely time for our loved one's.My husband hasn't many close friends he

could share how he felt with.Luckily my friends took him under their wing and gave him

lots of oppertunities to talk if he needed too.

Like most things in life we hear the bad situations(men who can't handle it) and not enough

of the good.

All the best to you and your lovely lady.You sound like a lovely couple.

Becky

 

I spoke to the surgeon and decide for the radical tracheostomy. I had my op last wed was extremely sore after couldn't move for two days, was in hospital for 5 days. Also my bladder isn't working properly so i have to self catheter my self which is uncomfortable, also inject my self for 28days for clots. Get my results in two weeks to see if i need more treatment. Xx

Hi trach ladies and chap!

I had a trachelectomy last March - i had my lymph nodes removed in Jan and tested they came back clear with no spread and then had my cervix removed in March through the same incision points. It was done Laprascopically at the Royal Surrey. I was in hospital both times for 24 hours and was up and about on day 3. 6 weeks post surgery i was exercising gently and 10 weeks after surgery i ran the 10k race for life. Everyone heals in their own time. It is uncomfortable, but its incredible how your body can heal, just give it the time it needs.

I was keen to get home as i had my parents staying to look after me and no children to look after so i was able to fully relax. I had a catheter in for a week post op which was awkward, uncomfortable and pretty embarrassing....but i drew a face on it and called it Wilson...made it a bit more light-hearted!

I haven’t had children but my partner and I are starting fertility treatment as i haven’t been able to conceive naturally yet so i will keep you all posted

Happy to reply to any questions if you want to PM me