sorry everyone I’m new to this support.
I keep writing in the wrong group. I have copied and pasted my original message.
Hi I’m a 56 year old mum of a daughter with cancer. My beautiful girl
Was diagnosed with cervical cancer in June 2022. She had to have a radical hysterectomy, as it had spread to the lymph node.
Because she had not yet had a family, nor met a partner, she had fertility treatment after the hysterectomy and had 6 of her eggs frozen. Hoping one day we will find a surrogate to have her babies.
A few weeks after the egg retrieval she got pneumonia and became extremely ill. Thankfully she recovered. Focussing back on the cancer, Clatterbridge decided that she would need 7 weeks of radiotherapy, every day. Plus chemo on Mondays. As everyone who have had treatment, that’s hard work. She completed treatment on 9th December. We were then told we had to wait 12 weeks for her next scan. Which was March 2023.
In Feb 23 she had terrible stomach pain and was admitted to hospital. She was given three different iv antibiotics for diverticulitis. She recovered within a couple of weeks, thankfully.
Her next PET and MRI scan results to see how well the treatment has worked were in March 23 .
The results from the PET and MRI have shown a thickening on the vagina and also highlighting on the abdominal wall. Disease hasn’t yet been confirmed. The oncologist and surgeons said we should watch and wait for 8 weeks. They are planning a scan for 20th May. They say if this is cancer they won’t be cutting it out. They will give more chemo.
I am trying hard to keep my faith and stay hopeful, but if this is disease, it’s been growing whilst she has had treatment, hence I’ve lost faith in the treatment working for this type of cancer.
From the beginning they have said this is an aggressive, fast growing cancer, that is poorly differentiated.
I’ve spent a year trying to understand it all and come to terms with what’s happening.
Is there anyone with a similar story who have had a positive outcome? I need some reassurance and most of all, my beautiful girl too.
my biggest fear is if they turn round and say it’s somewhere else and she’s palliative. I’m so sorry, as I know many cancer sufferers are palliative.
sorry for the very long message, but that’s my story to date.
Thank you for taking the time to read.
Hi Vicsar and welcome to our group.
I’m sorry to read what your daughter has been through, and, as a mum of daughters myself, appreciate how difficult this must be for you.
We have a lot of different experiences of this cancer within the group, and I wondered if you felt able to give a little more detail to see if any of the ladies can relate to your daughter’s particular circumstances?
Do you know which type of cervical cancer your daughter has? I notice you described it as “aggressive and fast growing”, so it’s helpful to know which type it is, and the stage at which she was diagnosed to see if anyone else in the group has the same.
It must be very difficult waiting for these extra scans to be done, but often the first scans after treatment are inconclusive as the radiotherapy does keep working in the body after treatment finishes. The next scans will hopefully give a better result, although I don’t have personal experience of the petscan lighting up in the abdominal wall as mine was confined to my cervix/vagina.
If it is cancer, and if the spread is outside of the cervix, then chemo would normally be the next step as surgery isn’t possible, but it may well be that the chemo would be different to the one your daughter had before. Do you know which chemo she had?
I understand it’s very upsetting to be considering that the treatment has not worked so far, but I would encourage you to think that there is always hope. There are drugs now which were not available even when I was first diagnosed, so things can change. And you do not have the final results yet to confirm that this is cancer.
Please keep us updated, and we will do our best to try and support you in the group.
my daughter is Sarah too. I think it was squamous cell carcinoma. Poorly differentiated they said.
I am trying very hard to stay hopeful, as there is nothing else I can do.
she was initially staged 1b2 before the hysterectomy, but afterwards they said she was stage 3, as it had gone to the lymph nodes. We are waiting for clarity now. Hopeful that it’s not on the abdominal wall. They say she can’t have a biopsy on the vagina, as it’s shrunk so much with the radiotherapy. A biopsy can only be done on the abdominal wall, once the scan results are back and disease has been seen. Hopefully it won’t.
if she has disease they say they can’t cut it out- why not? That makes me worry. But once again, hopefully it’s not disease.
she is struggling at the moment with stomach pain , lower back and more recently, bleeding.
I was wondering, if she finished her last treatment on 9th December, is it normal to still be so overwhelmingly exhausted. It’s been almost 6 months.
we have been putting it down to treatment for the past months. Now we are wondering if she has more disease and this is the cause. It’s a constant
thanks for listening. Your story is quite unbelievable. Wishing you well. X
Sarah’s mum, Sue
Gosh, my heart really goes out to you and your daughter. Squamous cell is the most common type of cervical cancer, and not normally the most aggressive type, but I think the fact that you’ve mentioned it was poorly differentiated is the critical point here.
We do have another lady in the group who was initially told she had an early stage cancer, but like your daughter was restaged to stage 3 after her hysterectomy as it was discovered the cancer had spread to a lymphnode. I’ll tag her-Lulabell
if the lymphnode had been identified earlier your daughter would not have had the radical hysterectomy but gone straight to chemoradiation as a hysterectomy is not done when there is lymphnode involvement.
Our first thought I think I’d always “cut it out”. I know I wanted that when I was first diagnosed, but as I was stage 2b it wasn’t possible. The danger is that it could cause the cancer to spread further, and cause more damage.
They will want to see another scan to get a better picture of where things are now before attempting the biopsy. But if it is cancer then there wouldn’t normally be a surgical option. However, chemotherapy should definitely be an option and could control any further spread. Cervical cancer when it recurs or spreads can be difficult to treat but there will be options and her team would be looking at the best way to manage it.
I was lucky enough, if you could call it that, to be able to have my surgery only because my cancer had not spread out of my pelvis. If it had spread, I would have gone to chemotherapy.
Your daughter has been through a lot in a relatively short space of time, so will be exhausted from that. I hope her pain is being managed as she shouldn’t have to suffer with that while she waits for the next steps.
But I understand there is always the “what if” niggle in your heads. However, nothing is yet confirmed, so try and hold onto that for now if you can.
Your situation is very difficult, and I hope you are trying to look after yourself too an£ have support around you. It must be incredibly hard to watch your daughter suffering, and I really feel for you.
Thank you Sarah. I will let you know in a few weeks the outcome. Hope it’s good news I can share.
at least she can move on- we all will.
there’s nothing worse than having a child with cancer. I lost my husband when I was 35. Not from cancer, an accident. He was 38. That was devastating! But my poor girl having this, it’s a different devastation.
but like I said, I will stay hopeful. I have an older daughter who is the best sister to my Sarah and daughter to me.
we have a lot of love in our family and staying hopeful.
thank you again. X
You are very welcome, Sue. Please feel free to post any time you’d like to if you feel you need an extra bit of support. I’m so sorry you suffered the loss of your husband at such a young age, and are now facing another difficult situation. Life really seems so unfair sometimes, doesn’t it?
I’m glad you and Sarah have your other daughter, and the fact that you have a lot of love in your family really is priceless.
Please take very good care of yourselves, and I’ll be keeping hope for you too.
I'm Lulabell, Sarah mentioned me in her post.
Firstly, let me say I'm so sorry that you are both having to go through this. My mum lives far away from me and it has been incredibly stressful for her knowing I am ill. On the positive side, we as daughters are so lucky to have you mums to support us and get through it together.
I also had a radical hysterectomy in September 2022, which I found so traumatic. I took absolutely ages to feel even slightly better. During surgery they found cancer in one of my lymph nodes so I did the six weeks of radio with once a week chemo. It was so intense and difficult, I'm still getting over it now. At my three month check up I was given the all clear, but in September I have to do the dreaded PET scan, which I've never done before. At three months I did a CT scan and MRI. It's all so stressful and I can imagine that having more bad news when trying to recover is a lot to take in.
I don't really have any advice but can only offer you comforting words and assure you that you aren't alone. Also try not to predict what might happen next, because as Sarah said, there are more options available now that we might not even know about.
Your daughter is so lucky to have you and your elder daughter. Keep strong for her and keep trying to do things to pamper yourself a little bit, nothing could be as hard as one of your children suffering but you need to look after yourself too.
All the best, keep in touch. Sending you a big virtual hug,