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Post treatment smear negative...still feel something is wrong

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Klaw36
Post treatment smear negative...still feel something is wrong

Hi guys. 

Just after some advice and a bit of a rant if I'm honest. I have been hesitant in posting this for a while now because I know in comparison with alot of people I've "got away" with not needing alot during my CC diagnosis and treatment. However that's not the whole picture. Bare with me this is complicated.  undecided

Following two Lletz and a lymph node removal I was staged as 1b1....just....like literally just on the next bracket. Because they had clean margins from the Lletz and there was NED in the lymph nodes that was where my treatment ended. Surgery was April 2019.

Fast forward to now, I am having so many issues still. I'm bleeding during sex (cracking as I am a newlywed) and between periods, my periods are 45ish days apart and I'm getting alot of discharge down there that isn't particularly pleasant. Sex is also quite painful still. 

I have just had swabs taken to check for infection and a smear done for my check up and smear was negative for HPV which is obviously awesome news. BUT I still feel like something isn't right. I'm can't put my finger on it but I just feel like something is being missed. 

I should explain for reference, that I have an unaturally large occurance of majority of types of cancer in my family, including kidney when i was 3 (yay living with one kidney- go me). 

My mum has had more than her fair shares worth too....in fact she has had more than a football teams worth as she has had 18  ...yep 18 instances of cancer in varying parts of her body. Both breast, lung, kidneys and bladder. Kidneys and bladders both recurring. Other delightful diagnosis in the family have been ovarian, skin, brain....I might be missing some. Who even knows any more. 

Anyway so my point is the first thing people will say I'm paranoid....well....maybe a little but probably not as much as you would expect. 

Anyway on top of my gammy lady garden I have a host of other things going on. I have been tested for underactive thyroid as had various symptoms such as weight gain, hair loss and dry skin amongst others. I have had a colonoscopy as I was bleeding from the bum and my habbits had changed and I'm having ridiculous bouts of acid reflux which results in vomiting for which I'm awaiting an endoscopy. I also have breast screening which I started at the age of 30, having been told at the age of 25 ( before my cc diagnosis) that I would need screening from 30 followed by hysterectomy and mastectomy when I have had my kids (which I'm now too scared to have any in case they inherit all this rubbish). 

For reference, we were tested for brca but it was negative but geneticist still recommend losing upstairs and downstairs to reduce my risk. 

So far apart from an initial low thyroid reading (which upon repeat was stable,) everything has come back clear. 

I feel like I'm losing my mind! I genuinely don't know where to turn now. Part of my feels like I should just opt for the hysterectomy now because I don't want to pass this "Cancer life" on to my kids. But I know that's something I can't undo once it's done. (I have an appt with gynae on Monday to discuss freezing eggs/embryos) 

Has anyone had similar issues? Not all of the above obviously 🤣, but the discharge, bleeding etc. 

 

Please tell me I'm not alone, and not nuts! 

Wilms tumour, full left nephrectomy and chemo 1991. Full remission 1993

Abnormal smear, HPV detected 29.01.19

Colposcopy 18.02.19

Lletz procedure and biospy 11.03.19

CC diagnosis 21.03.19 Adenocarcinoma Stage 1 

25.04.19 Further Lletz and laprascopic lymphadenectomy

October 2019 - NED :) 

Memagh

Awh bless you Klaw,

I cant say I've had anywhere near the symptoms you are having so I don't really know how much I can help but I didn't want to read and run. If this journey has taught us anything it is to listen to our body when it's trying to tell us something. I know you have said that you had your thyroid checked, have they also checked something called your parathyroid? It's a separate test from the standard thyroid. My oncologist recommended I have this checkeI d when I was having some symptoms (it came back clear). I have had chronic stomach pain and bleeding from the back passage which has shown up on scans as bowel inflammation. I think the idea of freezing your eggs is a very good one. At least you wont have to deal with that decision down the line if they decide you need to have more treatment. I hope you get some answers soon.

x Maria

 

Diagnosed CC 01st August 2019 Stage 1b2 with 1 local lymph node involved. Something else showed up on pet scan. Treatment delayed for surgery, done on September 9th. Found to be a simple ovarian cyst, 1 ovary and tube removed. Treatment plan 5 chemo, 25 radio and 4 brachy. Treatment start date 02nd October 2019. Treatment end date 8th November.

February 2020 3 month scans NED

August 2020 9 Month scans NED

 

 

Klaw36

Thankyou for replying Maria. Its hard because I don't know anyone else even close to my situation (given how unique it is ha!) So I don't have anyone comparible to ask. I know my friends and family will try to empathise and obviously it will come from the right place but I am one of the remaining few with no kids so they are in a very different place to begin with. 

But to be honest even just writing it all down like that helped a bit! 

I will keep parathyroid in mind, I have a follow up with gynae on Monday but I also need to go back to GP. 

Kathy x 

Wilms tumour, full left nephrectomy and chemo 1991. Full remission 1993

Abnormal smear, HPV detected 29.01.19

Colposcopy 18.02.19

Lletz procedure and biospy 11.03.19

CC diagnosis 21.03.19 Adenocarcinoma Stage 1 

25.04.19 Further Lletz and laprascopic lymphadenectomy

October 2019 - NED :) 

Memagh

Best of luck on Monday. Let us know how you get on. 
x Maria

Diagnosed CC 01st August 2019 Stage 1b2 with 1 local lymph node involved. Something else showed up on pet scan. Treatment delayed for surgery, done on September 9th. Found to be a simple ovarian cyst, 1 ovary and tube removed. Treatment plan 5 chemo, 25 radio and 4 brachy. Treatment start date 02nd October 2019. Treatment end date 8th November.

February 2020 3 month scans NED

August 2020 9 Month scans NED

 

 

Klaw36

Hey Maria,

So I had my appointment, he is going to do an MRI on Thursday as now both the smear and swabs have done back negative so he wants to take the belt and braces approach and check everything. 

We discussed about freezing embryos and he agrees it's a sensible approach and will refer me once we get the all clear from the scan. One point that was made was that my weight may well be a factor as to if they let me or not and I might need to lose 3 stone. Don't get me wrong I know I need to but I didn't realise this would be a potential factor for harvesting them so that was a bit of a shock. Also he is such a nice guy, he was quite delicate in how he delivered that piece of information hehe. 

But he thought they might be able to "get around" that because of my family history and recent diagnosis so we will see. 

Kathy XXX 

Wilms tumour, full left nephrectomy and chemo 1991. Full remission 1993

Abnormal smear, HPV detected 29.01.19

Colposcopy 18.02.19

Lletz procedure and biospy 11.03.19

CC diagnosis 21.03.19 Adenocarcinoma Stage 1 

25.04.19 Further Lletz and laprascopic lymphadenectomy

October 2019 - NED :) 

Jazza
Jazza's picture

Hi Klaw

Just a couple of thoughts to add to what Maria has said.  HPV screening is a good and sensitive test but it's not foolproof so maybe with your history you might want to consider asking if your smear test can also be checked for cell abnormalities - maybe something to ask the gynae on Monday?  Also, and it's not something I know much about, but have you been checked for Lynch Syndrome which can mean a predisposition to a range of cancers; the following link provides a bit more information: https://www.macmillan.org.uk/cancer-information-and-support/worried-about-cancer/causes-and-risk-factors/lynch-syndrome-ls

I hope you get some clarity on your situation soon.

Best Wishes

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: PMB
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 (1B2 on new FIGO) squamous cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A1 (2A1 on new FIGO)
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Klaw36

Hi Jazza,

Thanks for replying. I didn't see it in time before my appointment but I will ask him for sure. I have his email address so I might just pop it over. 

Regarding Lynch syndrome me and my mum were checked for it recently and it was negative but we were worried about that for a while. 

I think I'm going to try and get hold of the geneticist and ask for another consultation and see what he says about having kids. In a way it would be easier for someone to tell me what to do 🤣 

I have already discussed with hubby and even if we don't use the embryos we would donate them to someone else (if that's something that is done!) 

Kathy x 

 

Wilms tumour, full left nephrectomy and chemo 1991. Full remission 1993

Abnormal smear, HPV detected 29.01.19

Colposcopy 18.02.19

Lletz procedure and biospy 11.03.19

CC diagnosis 21.03.19 Adenocarcinoma Stage 1 

25.04.19 Further Lletz and laprascopic lymphadenectomy

October 2019 - NED :) 

Memagh

Hi Kathy,

It's really good they are acting on it and giving you an MRI, that will tell a lot. Thankfully not too long to  wait until your scan although any kind of waiting can cause us lots of anxiety. Best of luck for Thursday.

x Maria

Diagnosed CC 01st August 2019 Stage 1b2 with 1 local lymph node involved. Something else showed up on pet scan. Treatment delayed for surgery, done on September 9th. Found to be a simple ovarian cyst, 1 ovary and tube removed. Treatment plan 5 chemo, 25 radio and 4 brachy. Treatment start date 02nd October 2019. Treatment end date 8th November.

February 2020 3 month scans NED

August 2020 9 Month scans NED

 

 

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