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Worrying about treatment and lack of information

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Mel1508
Worrying about treatment and lack of information

Hi ladies

I’m looking for an bit of guidance really. 

Ive recently been diagnosed with stage 1A2 cc and am worried that my treatment plan isn’t yet in place and that I’m not fully in the loop about what is going on.

by way of brief history;

i was called for colposcopy due to abnormal cells and HPV found in recent smear. At that appointment I was then told I had ‘glandular’ changes and they performed LLETZ there and then. That was a bit of a shock in itself but fine.

i was then called by the hospital to come in to discuss my results. They confirmed that they’d found cc and this had been removed in the LLETZ. However they’d also found high grade precancerous cells which would need a second LLetz for removal.

I attended second lletz just three weeks later and it couldn’t go ahead as my cervix was not healed enough. I was in excruciating pain while being examined. At the appointment I had many questions including asking if possible further cc could be found in my results: which the answer is yes, and also how they will be able to tell that my cancer hasn’t spread. I was then told I would be invited to have key hole surgery on my lymph nodes in time. This was information I hadn’t been given at my diagnosis appointment. However, reading other women’s experiences of similar stage cancer I am worried that I’m not being offered MRI, etc and that’s these answers only came about when I posed the questions. I feel very out of the loop with what is happening and where my diagnosis is. I would have thought a discussion about a possible hysterectomy would have taken place but all I’ve been been told is that at the moment the second lletz is part of their investigations and it’s too early to know my treatment plan and full staging. I’m so confused and don’t know where to turn. 

 

Has anybody been in a similar situation and does it seem correct that I’m having a second lletz without discussion of other options? 

 

Thanks in advance, this forum hasn’t been a huge help to me already.

Mel Xxx

 

EL01

Hi Mel, 

I can't really give you any answers I'm afraid but my situation is similar. 

I was diagnosed with stage 1a cc yesterday after an abnormal smear which was followed by a lletz treatment 4 weeks ago. The consultant I saw told me I'd need to have another lletz in about 3 weeks (to make sure I'm healed) Like you I wasn't given any other options. It seems that for such early cancer a hysterectomy is seen as a bit excessive? That's the impression I got anyway. 
I'm just going to have to trust that they know what they're doing and hope for good results after my second lletz. 

Stay positive and make a note of any more questions that come to mind for your next appointment. 

Lou 

xxx

LaurieBeth

I don't have answers for you either except to say it is my understanding that 1a1 cervical cancers can often be treated with a lietz. Try not to freak yourself out too much if you can help it. It sounds like your cancer has been caught early, sontjst really helps your prognosis. Stay strong and take care.

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

 

 

LS17

Hi lovely

I'm sorry that you're in this situation, it's just horrible for you. Have you been given the contact number for the gynae consultant you saw at all? Or the gynae nurses? 
If you're worried and want to talk, I'd consider ringing their secretaries to ask for a call back, then you can ask them whatever questions you have. 
Hope you get it sorted and back on the mend soon xx

rufus

Hi Mel,

Sorry you have found yourself in such a frustrating position.  The situation of getting through initial diagnosis is tough at the best of times (and we are currently in very strange times!). 

One of the best sources of information I had at initial diagnosis was the cancer nurse. If you have their details I would be tempted to ring them. They tend to have an insight into what is going on and the time to talk through it with you. My nurse would ask the consultant any questions she couldn't answer and get back to me.  
In terms of treatment, I assume they are trying to put you through the least invasive treatment to either preserve your fertility or minimise the possible side effects.  It would appear that you are early stage.  
You didn't say when your next appointment is.  
Sending 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 Mel

I'm so sorry you find yourself in this situation and I really understand how uncertain and overwhelming everything must be feeling at the moment. I am not good at waiting either and found that in the initial part of my diagnosis and treatment plan I used to get upset at feeling like I'm the last to know what is happening with me.

As Rufus and LS17 have said, this is a time to almost take back a portion of control by reopening the communication with someone in your care team, it could be a Clinical Nurse Specialist (if you dont have one yet, call the colposcopy dept and ask about it) or a telephone chat with the consultant you've seen. One of the few good things about coronavirus I found, was that it has made it much easier to get answers relatively quickly by phone rather than have to wait for face to face appointments 

The team often dont know what is the best approach to take with each patient in terms of level of detail that the patient finds helpful. Some people like me, and sounds like you too, want as much info as possible to combat those 3am fear gremlins that come to torment you on sleepless nights. Other people prefer not to know too much in case it stirs up even more what ifs. Try and let them know what level of info is helpful to you, this is what I did, and they did respond and change their approach to accommodate it

I keep a notebook of questions and then when I get the chance to speak to a nurse or consultant I ask if it's ok to go through my list. You sound like you already have some really good questions for them, I used this website to help start me off:

https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/questions-to-ask-your-healthcare-team

Another good question which has helped me was "have I forgotten to ask anything you think I should have asked?" 

My team were always happy to explain the rationale behind "What are the alternative options and why are we ruling them out?" And these were answers I really needed to know for my own peace of mind. I hope you will be able to get in touch with someone who can give you the info you need about your specific and unique diagnosis. Everyone's is different, even at 1a level, there are differences in type of cancer, size of tumour, grade of differentiation, depth of invasion, etc etc that help the team to shape a treatment plan. So not every case at the same initial staging will be treated in the same way, and this is a good thing, because we are all different x

Sending you so much love and strength 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

Mel1508

Thank you all so so much for taking the time to reply. You have some great suggestions and I am definitely going to see if I can talk to someone on my care team.

I also love the suggestion of the note book for questions; because they do just pop into your head while you’re waiting and if you’re anything like me, when you’re in your actual appointments you’re so busy trying to take everything in, you leave without having asked everything you wanted to know.

 

I have taken a lot of strength from knowing we are all going through such similar emotions in all of this, as no one quite understands unless you’ve actually lived it. My next LIETZ under GA is next Tuesday, so hopefully will know much more very soon.

 

xxx

 

Lotty9000

Hi Mel

I'm sorry you find yourself in this situation, I was in Avery similar place to you this time last year. I had 1A villoglandular adenocarcinoma (glandular cancer of cervix) and high grade glandular abnormalities (CGIN) without clear margins. 
I had an MRI and CT 4 weeks after my lletz, this was partly due to there being visible growths on my cervix. FIGO guidelines state that any visible lesion should be graded 1B. I then had a repeat Lletz 6 weeks after the first. This was to confirm staging. It was found that the amount of cancer was 1A.

I had a laparoscopic total hysterectomy as glandular cancer can behave slightly differently to squamous call cancer. I also had completed my family and felt that the alternative of 6 monthly colposcopies would cause me a lot of stress and worry, and they potentially would not be able to examine the endocervical canal (where glandular abnormalities develop) due to scarring. 
This part is awful....the not knowing, however it does get easier I promise. Once you know what's going on and have a plan of action you'll feel much better.

You've got this!

Love to you xxxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma and high grade CGIN;

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

10/3/20 1st follow up including vault smear. Biopsy of presumed granulation tissue.....Confirmed negative :)

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Cervical cancer