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Guilty and confused about hysterectomy

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runrunrun
Guilty and confused about hysterectomy

Hi ladies,

I've read so many posts on this forum, and they have been incredibly helpful. So thank you all. I've felt so much less alone reading all your stories.

I'm 33, and I was diagnosed with adenocarcinoma in situ in September 2019, after having only low-grade changes 2 years earlier that doctors said would resolve themselves. My doctors say my AIS progressed very quickly. I have already had a cone biopsy, in which they took 1.6 cm of my cervix, and got clear margins. I have a 1 year old daughter, and was planning to have another child sometime in the next two years. I've been told I will need a hysterectomy, but that I can delay it to have another child right away. My doctors have said that until I have the hysterectomy, because AIS produces skip lesions and I had a lot of it, I face about a 12-15% chance that even with testing they are not detecting either AIS or invasive cancer. I also would face a high-risk pregnancy because of the substantial cone biopsy.

I have decided not to delay treatment to try to have another child, and just go ahead with the hysterectomy. I can't stand the idea of not knowing for sure whether I am all-clear. I can't stand the idea of taking a risk with my health when I have a baby and a husband who I adore, and we're happy now. I also have a very high-pressure job and I can't imagine doing a high-risk pregnancy that could require I have limited activity, or miss a long stretch of work to be hospitalized. I have a history of anxiety and depression, and I fear that risking sickness is also risking my mental health, which is currently very good. My husband is 100% supportive of my decision.

But I feel so guilty that I won't take the risk! I wanted another baby, and now I'm giving up. I feel like a bad mother. I also don't know anyone who has faced this particular issue, and I don't know if I'm overreacting. I would love to hear from anyone who has made the decision not to take any risks to have another child. How did you come to your decision? Did you regret it later?

Thank you so much.

noodlesdoodles

Hi 

my heart goes out to you at what is an incredibly difficult decision to make. The ‘what ifs’ are so hard as you are making decisions that effect yours and your family’s lives and trying to guess the outcome. If you feel you need to do it now and not delay listen to your instinct and go for it. You could try and talk it through with the helplines or your CNS or even call her consultant again for clarity. Talking it through can sometimes make things clearer.

You know yourself and there is no right or wrong decision to make here. It’s fantastic that you have your husband’s support too. You have support here and although I have not had to make that choice,I did have to decide between treatment. My mind was all over the place and I was trying to second guess every option. In the end I went with my gut,but felt better I had found out as much as I could about each option first. I wish you all the best and send big hugs xxx

12.06.19 Colposcopy CIN3 - told likely cancer

25.06.19 CC confirmed 

CT MRI

04.07.19 EUA - likely spread

16.07.19 results. Clinically 2B / radiologically 1B1. Decide between chemorads or hysterectomy 

30.7.19 consultant Do another EUA/ keyhole/ node extraction/ open up and only if no spread do hysterectomy 

21.08.29 - Laparotomy- did Radical Hysterectomy 

03.09.19 no residual tumour & nothing in nodes

bladder issues and Lymphoedema 

runrunrun

Thank you so much. I keep trying to tell myself there's no wrong choice, and I should follow my gut after learning as much as I can, but I've felt so guilty. So it's really wonderful to hear that from someone else who has been through it. 

Petesdragon
Petesdragon's picture

I am sorry to hear of your dilemma. 

I had had two children at time of diagnosis but I would have liked more. However, I was well aware how lucky I was that I had had children at all. I went on to be a foster carer for many years. Perhaps this is something you could consider later down the line?  It definitely isn't the same but it is still very meaningful. My foster daughter had a very serious illness and I know may not have survived without the care we gave. It always makes me think that it worked out right in the end.

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. 

runrunrun

That's so amazing about your foster daughter. I have actually thought about fostering, it seems like such a wonderful gift to give someone. I really admire people who do it. 

Lotty9000

I’m sorry to hear that you are in this situation. 

I like Karen had 2 children when I was diagnosed, I had always seen myself with another. I am very aware that I am very lucky to have my children and although the consultant had said I could have another like you I had 2 lletz with one being very extensive and this would’ve meant a pregnancy would’ve been higher risk, I was also diagnosed with adenocarcinoma.

It is a very difficult decision and I went ahead with a hysterectomy. While I don’t regret this I did have a period of time where I grieved the loss of my fertility even though I knew it was the right thing to do. I think what I’m trying to say is that there is no right or wrong answer just what is right for you and your family. Also it is normal to feel torn over things.

Good luck with everything xxxxxx

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

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

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:-)

runrunrun

I'm so sorry you had to make this same decision. Hearing that you feel like it was the right one is so comforting to me. Thank you.

Petesdragon
Petesdragon's picture

 Surviving for the family you have is always the right decision. Future babies are imaginary, they may not have happened anyway. Don't feel guilty, enjoy your family and one day you might be able to look back at things you did, that you might not have otherwise been able to do. Treat yourself to a mourning period but happy times are to come.

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. 

Tivoli
Tivoli's picture

Hello :-)

I am sorry you have had to make this very difficult choice, but I agree, staying well for the husband and daughter you already have is wiser than risking your health for a potential second child. My personal rule is that whenever I have to make a difficult choice, I don't allow myself to ever regret it. Always focus on the positive aspects of the decision you have made.

Be lucky :-)
Tivoli

Mrsdp

I'm 3 weeks post op had stage 1b1 I'm 32 with two boys aged 2&3 we just got married and planned to try for a third. I was devastated knowing I wouldn't be able to. But you know what I'd be more devastated knowing I wouldn't be around to see these beauts grow up I kept my ovaries so In theory we could look for a surrogate but that's not important to me now. You are not a bad mum this doesn't make you a bad person. You are an amazing mum putting the child you have first. Your a brave woman because non of this is easy. And your strong because you are doing it. Sometimes I think I was so hurt and upset by my diagnosis I went through every scenario and thought I was a terrible person your not. Sending love and if you need to chat pop me a message I don't mind take care x

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