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Feeling ashamed and over dramatic

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Scopes
Scopes's picture
Feeling ashamed and over dramatic

Hey, new here and have been diagnosed with cervical cancer. I’ve found when I have told a couple people they get a bit funny about it and then say “well it’ll just be lasered off”. Has anyone else had this experience? It’s really made me feel I shouldn’t share what I’m going through and sort of ashamed in a way because they said “oh you had an abnormal smear?” As though I’ve brought it on myself. 

 

Sorry to ramble I just feel really self conscious about it now as though I should keep it secret and that it’s gross,  “not a big deal” and maybe I’ve been over dramatic about it. 

 

Thanks xx

Stevie

Izzzy76

I 1got the exact same reactions , ohhh they will just do a letz, or cone procedure. Oh my friend had a bad smear too, no biggie. I had a tumor. I had to undergo quite invasive procedures. Biopsies, scans, chemotherapy, radio treatment and brachytherapy. Your friend had bad cells. Not cancer. 

I am sorry you've found yourself in this position but happy you've found us. I couldn't have done without the ladies here. And there is nothing to be ashamed of. 

Do you know your stage and treatment plan yet? 

28-8-2019 diagnosed grade 2 squamous 2B 4 cm tumor Mri suspect lymphe nodes but pet scan Shows no lymph nodes 25 radio extended field, 6 chemo and 4 brachy finished October 29 2019
LaurieBeth
  1. People are weird about cervical cancer, for sure. Lots of my friends shrugged it off, even after I told them I had to have surgery. Then they seemed to think I was making a big deal over nothing. Hysterectomy is a major surgery. Radical hysterectomy is an evwn more major surgery. As I lay here now with 13 staples hokding my abdomen together and five years of close monitoring ahead, I can promise this is a big deal. My own father asked what caused this and when I said HPV he gave me a look that definitely let me know he has some judgment--if I had been a "good girl" this would not have happened. Ha. People are a mess. 

    So, you are right and they are wrong. Luckily you have found us, and WE all know.  Stay strong and don't feel ashamed or like you sre overreacting. You feel like you feel!

Stay strong!

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII-horrible experience with cruel doctor

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor says we should just take it all out

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 Cervical Cancer, no clear margins- doctor calls my situation rare and shocking as my cone had clear margins

  1. 4/1/20-scan shows no evidence of spread Radical Hysterectomy, Lymph node dissection, and ovarian transposition May 12-pathhology staged cancer at 1a1. 

 

FeelingTheFear

Hi stevie 

Welcome to the forum, and although I'm sorry for the reasons that brought you here, it's good that you have found us as you will have lots of support from ladies who actually understand what you're going through. And I really couldnt have coped without the support of a couple of members on here who had the same treatment as me and really helped to guide my way and share their support and understanding so generously with me.

YES! I HAD EXACTLY THE SAME REACTIONS! "Oh you had a dodgy smear" "oh I know someone who had abnormal cells you'll be fine" "oh its a really common thing so try not to worry about" - uhhhh?! Also, the almost universal questioning about whether I was up to date with my smear tests. Does this somehow alter the level of compassion that ought to be meted to me? Do I gain an extra +10 sympathy points if I say yes? How many points do I lose if I am 3 years behind? Or 6 years? Do I get a compassion bonus when I confirm I had zero symptoms? The line of questioning that some people take is absolutely bizarre and frankly distasteful and inappropriate.

I'm on a rant here as it has really p&$$#@ me off and I hadnt realised how much, until I read your post. I normally try to be positive but this has really triggered me as it is so WRONG for you to have been made to feel like this, and it hurts, but believe me it says more about them than it does about you x

I wrote a whole lot more ranting but I have deleted it :-) suffice to say that this diagnosis has been a revelation in who actually has my back, and will support me, and listen and validate me, and who is a friend for the good times who hasnt got the energy to invest in my journey and is more interested in what I can bring to theirs. 

Sadly there is no way of knowing who is who, but some people who I did not think of as being in my "inner circle" have really stepped up to the plate and for that I am eternally grateful. So I am glad that I did not let those bad experiences put me off from letting other people in on what I was going through. As the right support has made all the difference to me and I'm so glad I was able to find it. 

You will not be judged here 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

55

I have told very few people - for the very reason that I fear being judged and get tired of having to give people an education on abnormalities and treatments! 

A

 

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result
55

"Be who you are and say what you feel because those who mind don't matter and those who matter don't mind" Dr Seuss ! In my experience you find out who your true friends are when you go through difficult times in life and I have found that I can count my true friends on the fingers of one hand. However I also think/find that people sometimes say insensitive things because they don't know what to say but really they don't mean any harm. Everyone on here understands how you feel.

A

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result
FeelingTheFear

55, thank you for putting that in perspective for me as I think it's very true, people would probably be mortified if they knew the impact their insensitive remarks have but it is more than likely never supposed to be malicious 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

55

You're welcome. I had similar experiences when my Mum had Alzheimers when people thought it was OK to make fun of this awful illness which is heartbreaking to see in your Mum. Sometimes I think I am oversensitive but I think often people don't understand things which are beyond their experience and sometimes they are scared of illnesses and it comes out in the wrong way. MacMillan has leaflets on how to talk to someone with a cancer diagnosis. Obviously we are all different and react in different ways but it still hurts when you think people are your friends and then they put their foot in it. I was once advised by a counsellor to communicate with people by using the phrase "I feel..." as no one can argue with that. For example you could say "I feel hurt.. " it also means that they are less likely to dismiss what you are saying. I am sure I have put my foot in it sometimes in life without intending to. I'm glad I could help someone to feel a bit better. By the way I ended up seeing a counsellor because of having a stiff upper lip & biting my tongue when people upset me so have learned that it is so important to vent your feelings somewhere. Another useful tip is to write a letter to whoever has offended you but DON'T send it; shred it instead but then you are not bottling up your feelings. I think sometimes people don't even remember saying upsetting or patronising things.

I will stop my own rant now! Try to enjoy the good weather and be kind to yourselves

A

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result
Jazza
Jazza's picture

The 'cancer' word terrifies a lot of people and they maybe don't even want to think about it or don't know how to react.  If I'm honest I think I was a bit like that before I had my diagnosis.  I didn't think very much at all about cancer and I'm embarrased to say that I thought it wouldn't happen to me because I'd always put in so much effort to have a healthy lifestyle - sadly it was partly this mind set that led me to stop going for smear tests when I was 50y.  So I've had to do a lot of soul searching since my diagnosis; in a nutshell I take the view that it is fear and ignorance that leads some people to be dismissive and/or judgemental when it comes to cervical cancer. 

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: post menopausal vaginal bleed
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1  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 2A
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Jeebers

Hi Stevie,

I too had the same reaction unfortunately, I even had my SIL ask me is it really cancer or just abnormal cells. I've had a radical hysterectomy and I've had so many people compare it to their hysterectomy and tell me it's the same that I've felt like screaming no it's not you still have a full vagina!!!!!! I'm currently undergoing radiotherapy after my surgery and I've had people tell me I'm so lucky not to be undergoing chemo. I'm 36 years old undergoing radiotherapy whilst going through surgical menopause with no HRT and yes while I recognize that there are people in a helluva lot worse situations it doesn't make what I'm going through any easier for me. Basically what I'm saying is from my experience so far people will always try minimize what you're going through, in their minds they are offering you comfort but you should in no way feel ashamed or embarrassed or over dramatic at any point this is life changing so you're entitled to your emotions.

Also got told by a so called friend I was stupid not going for smears and basically this was all my own doing and if I hear anyone else tell me I look great and dont look sick I will scream!

5/2/20 sent to a&e with abnormal bleeding, mass found on cervix

12/2/20 colposcopy and biopsy taken

26/2/20 diagnosed with cc - Stage 1b2

03/03/20 colposcopy with lletz, hysteroscopy and cystoscopy performed under GA

10/03/20 - admitted to hospital with abnormal bleeding, MRI, CT and PET scans done. PET showed abnormalities in lymph nodes, laparoscopic surgery to take biopsy of lymph nodes 

31/03/2020 - radical hysterectomy with lymph node and ovary removal

20/05/20- started radiotherapy 

FeelingTheFear

Hi Jeebers 

I'm the same age as you and wanted to send you a virtual hug as I am right there beside you when it comes to these same ridiculous comments people have made to me too! Even "you look better than you did before", well that's a real backhander I guess, haha

And on top of all the inane comments about my cancer, now they downplay my growing grief for my fertility with either "be grateful you're alive" or "kids ain't all its cracked up to be" or "at 36 it may not have happened for you now anyway even if you still had your bits"

You know, all people needed to say would have been, yes that's so [email protected] But you're right they just think they are offering comfort, sometimes to you, and sometimes to themselves (as in the case of your so called friend, and yep, I've had that accusation levelled at me too)

I'm so sorry for what you're going through, and the lack of meaningful support you've had from these people. 

Much love 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

Harvitt

My cousin said to me " well at least with cervical cancer and your treatment - chemorads you won't get all the other nasty side effects and pain or even surgery that other people get from cancer".... Er Well that's not true... I'm on the toilet with terrible stomach pains and poo explosions most days, I'm entering early menopause, my vag might and probably shrink and let's not even mention beautiful brachy. 

06 Jan 20 massive bleed. 7 feb 20 smear came back highly differentiated severe dyskolious. 14 Feb biopsies taken. 21st Feb cc cells found. 22 Feb 20 told poorly differentiated squamous cell. 28 Feb staged at 2a. Tumour is 2.4mm/9mm 6 March restaged at 3c due to 3 lymph node involvement - x1 2cm. 12 Mar 20 met oncologist - told me coronavirus will probably kill me before cc does. 18 March 20 pre scan booked.
LaurieBeth

I am bitterly laughing (painfully) at this thread. The part where people keep comparing their hysterctomies to ours...oh my God. One of my friends kept telling me I was going to have a tight vagina. She kept saying it over and over because I guess that was a benefit to her elective laparoscopic surgery. I finally said, I will have a PARTIAL vagina. Called a neovagina or a damn vaginal cuff. A tube to freaking nowhere. She then tried to explain to me that this was not how hysterctomies worked. So I promptly sent her a link to info on a RADICAL surgery. That shut her up. I can't stand people downplaying the sexual side effects either. My orgasm will be forever changed. So, sure, a huge scar and less powerful orgasms and a tube to nowhere are all better than death but I am a 43 year old single gal...let me grieve! I know people mean well, but man, let is all mourn. None of this ideal and all of it changes our bodies and how they work. I feel like if men went through this, like if a man had part of his penis cut off and his testicles transpositioned and maybe could no longer have an erection without meds (because I feel lube will be my new best friend for sex now since I probably can't self/lubricate anymore) people would act like it was some grest tragedy and death. But women are just supposed to hop up and be thankful. I am tried of people telling me how many middle age women have this surgery every year OR telling me to be excited about no more periods. I have never minded periods. And I liked my body as it was, thank you very much.

That rant felt nice...

 

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII-horrible experience with cruel doctor

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor says we should just take it all out

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 Cervical Cancer, no clear margins- doctor calls my situation rare and shocking as my cone had clear margins

  1. 4/1/20-scan shows no evidence of spread Radical Hysterectomy, Lymph node dissection, and ovarian transposition May 12-pathhology staged cancer at 1a1. 

 

More Information

Cervical cancer