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Hoping for some help/advice? :/

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Dennyp13
Hoping for some help/advice? :/

Hi there :) 

 

First time I’ve used anything like this so please bear with me! 

Hoping for some advice in regards to my first cervical screening I received 22nd December 2018.. 

As a busy single mum of two children aged 3 and 9 (9year old born with multiple health problems and disabilities) I’ve been putting off my cervical screening since my 25th last year (yes naughty I know) however due to bleeding pretty much constantly for 6 weeks I finally bit the bullet and found the time to get myself to the doctors over it where they did my screening at the same time.. 

nurse who did it didn’t really say much except that she would refer me to hospital as is protocol and I would receive a letter with my appointment.. which came right between Christmas and new year stating an urgent referral had been made and to attend my colposcopy on the 3rd of January less than two weeks after I’d had my screening..

I attended the colposcopy on the 3rd in which she mentioned mass tissue growth and high cell changes and asked me some questions such as had I had any weight loss recently? Yes actually I’ve gone from a 10/12 to a 6 I’d put down to being a very busy stressed mummy.. have I been tired more than usual? Well again I’m a busy mum of two and my eldest was born very poorly and requires two different machines over night aswell as lots of other cares so I’m always tired.. have I had any pain in my back or pelvis? Yes actually I’ve been going backwards and forth to the doctors for well over a year with back pain that they can’t seem to work out and just assume it will go on it’s own but after well over a year it’s just got worse to the point it’s waking me up every 4 hours in the night where the painkillers are wearing off and I have to take more just to ease it to sleep again.. without painkillers within 6 hours the pains so bad I can barely move at all.. 

So she decided to do some biopsy’s and gave me an appointment there and then to go back and see her in person exactly two weeks to the day for the results? 

Should I be as concerned as I am about how fast this is all being pushed through and the fact she wants to give me these in person? 

Has anyone else had this experience? 

Sorry for the very long post and thanks for any replies in advance :) 

Petesdragon
Petesdragon's picture

I am sorry you have had no replies as yet. I thought about replying a couple of times and I am sure others have too. However, it's hard to.know what to say. Only the biopsy results can tell you what's going.on. Those symptoms don't sound good but they can represent other things besides cancer so try not to.worry too.much in the meantime. 

I wish you the best of.luck with your results. 

Karen 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Petesdragon
Petesdragon's picture

I am sorry you have had no replies as yet. I thought about replying a couple of times and I am sure others have too. However, it's hard to.know what to say. Only the biopsy results can tell you what's going.on. Those symptoms don't sound good but they can represent other things besides cancer so try not to.worry too.much in the meantime. 

I wish you the best of.luck with your results. 

Karen 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

mrsarmitage90
mrsarmitage90's picture

Hi,

I'm finding it very hard to type a response out, but I want to be honest and say what I'm thinking. I think the nurse hadn't told you about your urgent referral because she didn't want to ruin your Christmas, which was kind of her, could you perhaps go back to her and ask her what prompted her to refer you urgently? 

It isn't protocol to refer to hospital when you have a smear, not unless something is deemed suspicious, although most of the time a patient does not have cancer. 

What is concerning for me is that the doctor mentioned mass tissue growth and made you an appointment for a fortnight later, as well as asked you questions about cancer sumptoms, of which you have said you experience. 

There is a chance that the doctor wants to perform treatment via LEEP/cone biopsy but wants to check the results of biopsies to check the level of abnormality before proceeding. 

If I were you I would gather as much information as you can re: what the usual protocol is for referring, booking a face to face appointment two weeks later and then call the doctors secretary at colposcopy and ask for a telephone appointment to ask what they saw at the colposcopy and do they think it's cancer. Questions always arrive after appointments.

My advice would be to prepare for the worst but hope for the best and to take someone that you trust with you so that they can maybe ask questions, provide emotional support or can just remember what the doctor said! Are your smear results in yet?

PM me if you'd like to chat. I have 3 children, two of whom are the same age as yours. :)

Emma xx

Smears between 19&25: Borderline, then mild, then moderate. CIN 2 confirmed by biopsy (2015). 'Watch and wait'

2016: 12 weeks post partum smear - normal.

2018: Fast-tracked to colposcopy as 'cervix didn't look right' during smear. Colposcopy noted abnormal cells, no biopsy. Smear sample label not filled out and so couldn't be processed. 

Jan 2019: Smear - High grade dyskaryosis (Moderate)

Feb 2019: Colposcopy - Large ectropion, CIN 2-3 observed. LLETZ performed. All CIN successfully removed.

SoozeH

That's a great reply Emma. Like you I haven't known what to say.  

The waiting time is the worst and your mind goes into overdrive. 

You are in the system now, 2 weeks is the referral time, and if it is bad news, you will be given a treatment plan. 

Definitely take someone with you, as Emma says, not just for support but to remember what is said.

Wishing you all the best, you might have a fight on your hands, but you sound like a strong determined Mum and it is doable.

xx Sue

May 2017 Diagnosed Adenosquamous Stage 2b

July and August 5 Citplastin and 32 radiotherapy

November 3 month Mri

January 2018 Mri result cervical tumour gone but still enlaged lymph node

April 2018. Mri result. Lymph node shrinking but growth where cancer was.

May 21st 2018 Total Pelvic Exenteration

Jan 30th 2019 Bastard is back !

Dennyp13

Thankyou you so much ladies for taking the time to reply, I really appreciate it! 

From the smear I believe the nurse put on the letter to the hospital suspected pollup but to get me through to the colposcopy so quickly over Christmas i suspect she thought more.. 

And then when I was given a date there and then at my colposcopy for my biopsy results in just two weeks time and to go in person I knew something wasn’t great.. 

As I mentioned my eldest child was born very poorly and spent the first two and a half years of her life in hospital so I kind of have a sixth sense when doctors already know something but can’t say until they have definite proof which is why I think I turned to this forum for some advice.. something I’ve never done before! 

I attended my last two appointments alone so I think maybe they were trying not to panic me which probably panicked me more so I think this time I’ll take a family member with me and I do think the news isn’t going to be good news :( 

I’m very grateful for your honest replies as with my daughters health problems I’m the kind of person who needs honest opinions and answers so I can get my medical head on and deal with it solely on the medical side at times necessary and then research all possible outcomes so I’m always prepared for the next outcome.. 

its a relief to know that I can do that now with myself and know I’m not the only one who thinks it’s probably going to be needed, thankyou :) xx

Dennyp13

Update:

just had a phone call from the secretary at hospital to say they’ve got the biopsy results and want to move my appointment forward to this Thursday instead of next Thursday to discuss the results in person so I think it’s safe to say the results aren’t good :( 

Petesdragon
Petesdragon's picture

I am so sorry to hear this Denny. I think all the responses above which we all rather delayed making show what we all suspected. It's highly likely that it's cancer and you are clearly prepared for that. However early cancers are treated with success rates in excess of 90% so there is still tons of room for optimism.  It won't be nice but not necessarily devastating. I wish you the very best of luck. Lots of support here.

Karen x

 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

mrsarmitage90
mrsarmitage90's picture

Aw Denny, I'm sorry to hear that. It's very encouraging that they have got the results back so quickly and you're going to be seen quickly. 

Almost everyone says that the waiting is the most nerve-frying thing, so that you don't have to wait too much longer is good. 

This forum is here for you, if it is cancer and you require more tests and waiting then don't be afraid to air your worries here with people who know what you're going through. As mother's I think we instinctually push our own health and wellbeing to the back of our mind and focus on our children, try to take time for you now and ask for help if and when you need it. 

I hope you'll update us on Thursday. I'll be thinking about you. Xx

Smears between 19&25: Borderline, then mild, then moderate. CIN 2 confirmed by biopsy (2015). 'Watch and wait'

2016: 12 weeks post partum smear - normal.

2018: Fast-tracked to colposcopy as 'cervix didn't look right' during smear. Colposcopy noted abnormal cells, no biopsy. Smear sample label not filled out and so couldn't be processed. 

Jan 2019: Smear - High grade dyskaryosis (Moderate)

Feb 2019: Colposcopy - Large ectropion, CIN 2-3 observed. LLETZ performed. All CIN successfully removed.

Dennyp13

Thankyou for your lovely support ladies :) I think biggest thing I’m worried about is my kids especially my eldest and worrying about being able to care for her the way she needs but I suppose that’s something to face when and if that situation comes.. I will most certainly update you on the results on Thursday :) 

 

thankyou again ladies xx

Heavensnewangel

I am just a reader and wasn't going to respond...I was just reading because I am being sent for a colpolosocopy...Now I won't mention myself, but my mother had cervical cancer and she had had a hysterectomy after I was born so never had a pap cuz she thought she didn't need one.What she didn't know and found out when she had the cancer that she had a partial hysterectomy which left the cervix but took the uterus out and that is where she got the cancer...Now the moral of my story is, the cancer is slow growing you went as soon as you had the bleeding after 6 weeks (my mother did too), now what I want to tell you is and I hope it will ease your mind a little is they don't mess with cancer, my mom was called in right away too and started on treatment and she was cured...Now if they tell you, you have a 50/50 chance of survival, don't be scared (which I know is hard not too), they said the same to my mom...It was explained later is because some cancers come back and after 5 years they cannot tell you that you are cured...As for your symptoms of back pain, being tired could be from anemic from the blood loss and the back pain could be a result of numerous things such as fibroids, cysts...becaues those are very late stages of cancer and for you to bleed just 6 weeks straight with usually getting pap test done  they would have suspected earliar or you would have had the bleeding sooner, I highly don't see it being very advanced cancer...For them to move the appointment, I won't lie to you, that does not sound good but sounds to me that its probably early stages of cancer that is highly treatable...You are 26 as you mentioned that it was a year since you missed your pap at the age of 25 last year, that sounds to me like its probably early stages...It takes 10-15 years for HPV to turn  into cancer so unless you were a child who had sex at those ages, It's not too advanced...Let us know how you make out.  Bless you and all the best. 

Dennyp13

Thankyou angel :) 

keeping all my fingers crossed it has been caught early!

Get some answers today so I’m preparing myself for the news and shock just Incase and getting everything written down i want to ask and know beforehand Incase the shock kicks in before I get my questions out :) 

The hardest part I think of all this is thinking about how it’s going to impact on my children and how things will proceed for them but I’m so shocked at how supportive everyone’s been so far not just family and friends but strangers too.. gives me faith no matter what the results are today I’m going to get through it :)

 

thankyou everyone one for your honest but much needed answers and support xx

Petesdragon
Petesdragon's picture

Good luck today Denny.

Karen 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Dennyp13

Just a quick update on today:

confirmed CC further scans next week to find out what stage and then meet with the multidisciplinary team to discuss treatment 

xx

mrsarmitage90
mrsarmitage90's picture

Hi Denny. I'm so sorry to hear! I've been thinking about you, just thought I'd check in before bed. 

How are you feeling? Try and keep positive, I know it's hard. Sending so much love and light your way. Xx

Smears between 19&25: Borderline, then mild, then moderate. CIN 2 confirmed by biopsy (2015). 'Watch and wait'

2016: 12 weeks post partum smear - normal.

2018: Fast-tracked to colposcopy as 'cervix didn't look right' during smear. Colposcopy noted abnormal cells, no biopsy. Smear sample label not filled out and so couldn't be processed. 

Jan 2019: Smear - High grade dyskaryosis (Moderate)

Feb 2019: Colposcopy - Large ectropion, CIN 2-3 observed. LLETZ performed. All CIN successfully removed.

SoozeH

Hi Denny . just checking in to see how you got on. Sorry to hear that CC was confirmed. Things will be moving now and the team will tell you what treatment they recommend after the scans. It won't be easy but it is doable and you sound like a very determined lady. Take all the help and support you can and we are all here rooting for you 

xx Sue

May 2017 Diagnosed Adenosquamous Stage 2b

July and August 5 Citplastin and 32 radiotherapy

November 3 month Mri

January 2018 Mri result cervical tumour gone but still enlaged lymph node

April 2018. Mri result. Lymph node shrinking but growth where cancer was.

May 21st 2018 Total Pelvic Exenteration

Jan 30th 2019 Bastard is back !

Petesdragon
Petesdragon's picture

I don't think any of us are surprised, they were such classic symptoms. I hope we prepared you for the bad news without scaring you too much. 

A bit more waiting and worrying to come then you can start the FIGHT! Here we go...all behind you cheering you along.

Karen 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

mrsarmitage90
mrsarmitage90's picture

I'm getting all emotional at these powerful replies! Sending love Denny xx

Smears between 19&25: Borderline, then mild, then moderate. CIN 2 confirmed by biopsy (2015). 'Watch and wait'

2016: 12 weeks post partum smear - normal.

2018: Fast-tracked to colposcopy as 'cervix didn't look right' during smear. Colposcopy noted abnormal cells, no biopsy. Smear sample label not filled out and so couldn't be processed. 

Jan 2019: Smear - High grade dyskaryosis (Moderate)

Feb 2019: Colposcopy - Large ectropion, CIN 2-3 observed. LLETZ performed. All CIN successfully removed.

Dennyp13

Thankyou everyone!

i can honestly say if it wasn’t for your honest replies I wouldn’t have been as prepared as I was to hear it so again thankyou :) 

yes been told everything will move forward quickly now but I think as it’s already gone so quickly to diagnose it as cervical cancer I think a slower pace would throw me out now haha! 

Keeping positive and trying to find a lighter side to it all and my family and friends have all been incredible fills me with hope for what’s to come next :) 

 

much appreciation and gratitude for you lovely ladies aswell xx

Petesdragon
Petesdragon's picture

Glad to be of help. I am just coming up to 21 years post diagnosis!

karen x

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Gezabel

Wishing you all the best xx

gezabel

3.01.19

obnormal cells and HPV

22.01.19

Colposcopy, biopsies taken, waiting results 

Dennyp13

Petesdragon, 

how have you been during those 15 years?

i think what I mean is have there been many scares or long term effects? 

Hope that isn’t too much of a personal question if so I apologise! 

I know I’m lucky I’m in a sense of whilst I had my kids young I still had the opportunity to have them unlike many others bless them, and I know what’s likely to happen now but the future still holds a big question mark? 

 

Xx

Petesdragon
Petesdragon's picture

Hi Denny,

21 years, not sure where you  got 15 from! So just to remind you it's better still.

I was good for twenty years until 2017. I lost my fertility but like you already had two children so I went on to foster instead. I was vigilant about using the dilators so kept my function in.the lady department. Only problem was I did develop a very irritable bowel from the RT but I was able to manage. I always kept Imodium in my bag. Other than that I lived my life perfectly normally and felt perfectly healthy.

I was unlucky in that I developed a second cancer in 2017 caused by the radiation. That won't happen to you. The doses given in 1997 were much bigger than they are now and not as precisely targeted.

You don't know yet what your treatment will be so you might avoid radiation altogether.

I will keep an eye on.how you are doing.

Karen x 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

More Information

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