Total Pelvic Exenteration

  • 4 replies
  • 9 subscribers
  • 1384 views

Hi all,

I am very new to this community and looking for some help and advice on female total pelvic exenteration. My mother has had reoccurring cancer in that region (previously anal cancer and underwent surgery / stoma bag) and has now been told she has to undergo the above surgery which is very intense. Also during the surgery they will have to remove the coccyx and take muscle/fat from her thigh to replace with the gap at the tailbone. Then attempt to put her hernia back which grew from the previous surgery  

We are trying to support her as a family and also want to know other peoples experience with this cancer and what to expect from the recovery stage.

I really hope there is people who are open to talk with us and we can provide our mum with peoples experience and also link her in with them for support.

Thank you so much and apologies if this is not the correct way In doing this. Any help and advice is greatly appreciated during this difficult time.

Thank you so much,

C

  • Dear California09,

    Thank you for getting in touch. Welcome to the Online Community.

    I can only imagine how difficult it is to hear that your mother has to go through such an extensive surgery. It’s only natural that you would want to support her the best way possible.

    I see you have reached out the Vulval Cancer Group on the online community. I’m sure you will some wonderful support there. You may find that someone in the community have also had a total pelvic exenteration and they will be able to tell you their experience.

    I am wondering if your mother has a Clinical Nurse Specialist? They may be able to arrange for your mother to speak to a patient who has been in a similar circumstance.

    You mentioned that you would like some further support for your mum. Your mother’s treatment team and GP are also there to support her. They can also refer her for different types of support such as district nurses or if needed the community palliative care team. They can help manage your mother’s pain and any other symptoms that your mother may be experiencing. 

    Our In Your Area page provides patients and their families as well as healthcare workers a list of support that is available in your local area. You may want to access this to see what is suitable for your mother.

    It’s important that whilst you and your family are supporting your mother that you also look after yourself. It can be physically and emotionally draining looking after someone with cancer.

    I hope this information has been helpful. Please don’t hesitate to get back in touch. You might want to pass our support line number onto your family. We are open 7 days a week from 8am to 8pm. We would be more than happy to talk things through and provide emotional support.

    Best Wishes,

    Kat

    Cancer Information Nurse

    Our ref:ED

  • Hi

    So sorry to hear what your mum is going through its also particularly hard this time of year too. Please have a look at my profile for information but I underwent a vaginalectomy in July this year but for a different type of cancer. I also have an ileostomy for Crohns Disease. 

    Please feel free to contact me if you feel I can be of any help to your mum.

    Big hugs

    Blackswan

  • Evening Kat,

    Thank you for your time and response. My mum doesn’t have a clinical nurse specialist to speak with at the moment but I presume that will come once her appointment next two weeks is in place to discuss in depth surgery and then the date for surgery. 

    On the further support, yes I presume that will also come from her team after the above meeting. I might just be being inpatient and probably wanting all the answers to my questions answered which is unrealistic. 

    I will certainly look into the above information you have kindly provided and very grateful for that. 

    thank you so much,

    C

  • Evening Blackswan,

    thank you for taking the time out to respond to my post. Very grateful for this. 

    I have looked at your profile and I hope you are recovering well from recent surgery. 

    It would be great to link you in with my mum once we have the meeting regards to the full surgery details. My mums just finding it difficult to get online and reach out due to everything being so new and also being so busy with scans, appointments, clinics etc so I wanted to try my best to help and support her with any information that my help her. 

    cannot thank you enough for reaching out, I am truly grateful and hope you have a lovely Christmas tomorrow. 

    thanks,

    C