Cervical cancer

A support group for anyone affected by cervical cancer to come together, share experiences, and ask questions.

Cervical cancer with no womb

Friendwithcancer
Posted by

Hi everyone,

My best friend has just been diagnosed with stage 2b cervical cancer and pre-cancer of the vagina. However, she had a hysterectomy in May 2018. The surgeon should have removed the whole of the uterus, the cervix and the fallopian tubes but leave her ovaries, but they're saying they left a small amount of cervical tissue and this is where she now has cervical cancer! 

Has anyone else had the same experience?

Should she be blaming the surgeon for no completely removing the cervix?

latchbrook
Posted by

Hi  and welcome to the online community

I'm sorry to hear that your friend has recently been diagnosed with cervical cancer along with pre-cancer of the vagina. It must be a very difficult time for you both but it's great that you're supporting her.

It's natural to look for something or someone to blame when you have a cancer diagnosis and your friend obviously feels that her surgeon is to blame for her cancer. She may find it helpful to talk things through with someone on the Macmillan Support Line. She can call them free on 0808 808 0000 and they are available from 8am to 8pm every day of the week.

Most people, and that includes me, say that they feel more comfortable and in control of the situation once they know what their treatment plan is. Has your friend been told yet what treatment is planned for her?

Wishing you both all the best

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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Friendwithcancer
Posted by

Hi latchbrook

Thank you for the welcome.

Yes she got her treatment plan on Wednesday, the oncologist wants her to have surgery to remove the top of the vagina where both the cancer and pre-cancer lie then give her 5 weeks of radio & chemo, but she doesn't want to have surgery so she's going with 5 weeks of chemo and radiotherapy then bracytherapy and hopefully that will do the job. It's radiotherapy every day for 5 weeks then chemo once a week for 5 weeks

She has wrote a lengthy letter to pals to make a formal complaint about the fact they dismissed her for 2 years and now she's in this position.

She has a Macmillan nurse but she can never ever get hold of her her phone is constantly on voicemail.

I'm really struggling to get my head around this, the appointment she had on Wednesday made everything very very real it felt like a blow to the stomach listening to everything. I've recorded every appointment she's had c9s things get missed and I now need to go through the recording and make notes from what was said because things get missed, but I can't do it.

I struggle myself with fibromyalgia which leaves me bed ridden for weeks at a time, but I've pushed my illness and family to one side to be there for and with her, like any friend would do, I'm just finding it hard.

Her treatment starts on 5th august

latchbrook
Posted by

Hey 

I'm pleased to hear that her treatment is due to start shortly and that she has involved PALS regarding her previous surgery. They should be able to investigate on her behalf to find out what went wrong with her care.

It's good that she has been assigned a cancer nurse specialist (CNS) as they are invaluable for liaising with her oncologist and answering any questions that might arise in between consultations. I have one and her phone always goes to voicemail. However, she does ring me back either later that day or the next day and your friend's CNS should if she leaves a message. What you have to bear in mind is that they spend most of the day with patients so leaving a message is the best way of getting to speak to them.

Attending appointments with your friend is a really good idea as two pairs of ears are definitely better than one! Recording, with the consultant's permission, the meeting is also an excellent idea as it's easy to forget what was said. If you're finding it hard to listen to the recordings perhaps your friend would be happy to take over that responsibility.

You sound like you're a very good friend but you must take time to look after yourself as well especially as you're also not well. You are also welcome to use the Macmillan Support Line, as it's not just for the person with cancer, if you would benefit from talking to someone about how you feel. 

I also think that you might benefit from joining the family and friends group as it's a safe place to share your worries and get support. Clicking on the link I've created will take you there if you'd like to join.

Keep us up to date with how your friend gets on.

Sending a supportive ((hug))

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Arla
Posted by

Hi friendwithcancer,

I was aware that sometimes part of the cervix can be left after a hysterectomy (I think my CNS told me that) she clarified that mine has been completely removed and that I wouldn't need smear tests (I had womb cancer). 

I always have to leave a voicemail for my CNS but she always calls me back within a day or two, has your friend left a message for her CNS? I've always been able to email my CNS too.

good luck to you both, I hope that your friends treatment goes well

lots of love

xxx