My mum has just got diagnosed with cancer

Hi again Bexx96 

It’s so frightening for both you and your mum to hear she’s had a cancer diagnosis but please try not to spiral downwards if you can help it. 

I appreciate you feel you’ve been let down by the gp. Post menopausal bleeding should always be investigated, and the gp should have investigated her hip pain further. I had both post menopausal bleeding and a lot of pelvic and hip pain, but my gp did investigate the bleeding promptly with a referral to gynaecology.

My hip pain was left un investigated at the time, but it turns out that was unconnected with my cancer and I was actually the start of osteoarthritis. Unfortunately that has resulted in my condition now being severe, but at least it was nothing to do with cancer! 

I can read through your words the anxiety you are feeling, and the fact that you are so worried about where things are with your mum. Waiting for the results of scans and tests is one of the most difficult times, and it will be hard for you to see your mum in pain.

Once the results come through, your mum should have an appointment with her consultant to discuss them. The consultant should be able to let you know exactly where the cancer is, and what stage it is. This information is crucial to determine the right treatment. We have experience of various different treatments and surgeries within the group, so once you can tell us this, we’ll be able to share our own experiences. There are lots of success stories in the group, where ladies have come through and are living their lives again, so please try and focus on how successful treatment can be.

When you know what the treatment plan, it helps. You can focus on helping your mum go through whatever might be needed. I know I had a lot of pain before I was diagnosed and it was difficult to manage. However, it didn’t mean that my cancer was too advanced to be treated. In fact, despite the fact that I had a 3.7cm tumour, a scary amount of bleeding and all the pain, my cancer was actually stage 2b (stages of cancer are between 1 and 4) and although surgery wasn’t possible, I was able to have chemotherapy and radiotherapy.

The chemoradiation treatment was pretty intense, but was over a short period of time-7 weeks for me-and I recovered well from it with no lasting effects. Many of us in the group have been through this treatment-some have side effects and some sail through, but the main thing is we’ve got through it. My pain and bleeding stopped after 2 weeks of treatment.

Your mum will naturally be frightened, and being in pain wears you down. I’m sure she will be glad that you are there for her. Are you able to attend appointments with her? It helps to have another pair of ears for the results appointment especially. Think about questions you would like to ask and write them down to take to the appointment.

If anything the doctor says is not clear, or they use medical jargon, ask them to explain things simply, and slow down. I’ve done this myself and they don’t mind. Make sure you understand everything and know what’s going to happen.

Your mum should have been allocated a CNS (cancer nurse specialist) and you should have a phone number for them. Feel free to ring them with any questions or worries and if they can’t answer immediately, they will call back-they are a great source of help and advice.

You need to look after yourself too in order to be fit to help your mum. It’s important to get enough food and sleep to stay well yourself to be the best support you can be, and I can tell you will want to be there every step of the way. 

For now, you need to sit tight and wait for the next appointment for more information. Try not to dwell on anger about the gp-you have time enough to make a complaint to the practice if you’d like to do that. Focus on your mum being as comfortable as possible-if there are signs of the pain becoming worse or the bleeding, then take action by calling the gp or the cancer nurse for advice. 

You sound as if you’re being the best daughter you can be in very difficult circumstances so please know you are doing everything you can for your mum. 

Post any time in the group-share your worries and concerns with us and we’ll be here to support you through as best we can.

Sarah xx

Hello 

I really want to thank you for this message. I’ve also forwarded this onto my sister and brother as I feel like they need to hear this too; and they massively appreciate the kind words too. This is probably going to be a message I’ll be referring back too when I’m spiralling. 

May I ask do you know how long you may have had cancer before you found out the diagnosis? 

When me and mum have been speaking apparently the doctors have been saying that’s she’s missed a smear and hasn’t had one in the last 7 years. But she’s defiantly had one in the last few years as that one come back with cancerous cells. They seem to have lost the records for this. I guess I’m just overthinking well both of us that she may have been sitting with it for a bit?

Hi Bex

Cervical cancer is usually slow growing and can be present for a long time before the symptoms become noticeable, but it’s very difficult to tell how long it may have been there.

I had some bleeding and pain, looking back, for probably at least 2 years before I even saw a doctor-in fact I moved to England from Scotland and wasn’t even registered with a doctor for several years. I remember in 2016 having lots of issues, but put things down to a lot of stress and anxiety as I lost my mum and my sister exactly six months apart that year and that was a lot to deal with in terms of sorting everything out.

I suspect I’d probably had cancer developing even before that…so I would think by the time it was diagnosed in 2018 I’d probably had it for around 5 years at least, maybe more. It can take 10 years or more for precancerous cervical cells to develop into cancer, but not even the doctors would be able to tell how long I’d had it. 

You mentioned that your mum had cancerous cells identified from a smear some time ago. I’m wondering why this wasn't treated at that point? Cervical cancer usually starts with having abnormal cells being found but these can be precancerous and not actual cancer. 

Sometimes these are just monitored, and depending on the severity of the abnormality found, these may just require a further check to keep an eye on them so they don’t get worse if they are low level.  I’ve never heard of cells which are actually cancerous not being removed by treatment, and the patient followed up with further testing. It may be that your mum might have had pre cancerous cells? It would be difficult to know if records cannot be found.

However, I’ve learned not to look backwards and dwell on things I can’t change as it’s a waste of my energy. I should have gone to a doctor earlier, I should have taken better care of myself, but I am where I am. I’ve paid a very heavy price for it, but I can’t spend my life blaming myself or asking “what if”..so I’m just glad to have come through my cancer and it coming back again for another go! I count myself very lucky to still be here at all and choose to focus on that.

Your mum can request a cervical screening audit to look back over all her medical records but this might take some time. She may want to do this, if she wants to try to find answers, but she may just want to focus on where she is right now and deal with her current situation. Cervical screening tests are done on a national basis, not organised by gps, so there should be a record of tests done going back for 10 years prior to the cancer diagnosis.

A cancer diagnosis is a lot to process, and dealing with it can take a lot out of a person so it’s a personal decision whether she wants to start the audit process or prioritise dealing with the cancer for now. 

I’m glad to read you have other siblings and hope you can all help support each other to share the load. My mum had a different type of cancer, but I know how devastating it was when she told me she was ill. 

Take care

Sarah xx

Hello 

sorry it’s took me to long to get back to you. I’ve had some other things go on too. 

thank you for sharing with me your journey; it has put my mind to reasonable level without it spiralling. 

we are still currently waiting out on her pet scan results she had her MRI but she’s back in hospital as she can’t control her pain. They did mention the tumour is grow in which has me worried again as this means it’s progressing. I’m just worried with these delays that it’s going to be too late as she’s really not well at the moment. 

xx 

Hi Bexx96 

I’m sorry to read that your mum’s in hospital, but hope this means her pain can be better managed while you wait for the next steps. 

Once the scan results are back, these will be discussed at the multi disciplinary team meeting(MDT) to decide on the plan going forward. I can understand it’s extra worrying to be told the tumour has grown, especially with the level of pain your mum is experiencing, but the team will want her to be as well as possible to undergo any treatment, as it can be quite tough in itself.

So they’ll be doing their best in hospital to manage the pain to a tolerable level, and then it’s a case of wait and see what the plan is going to be.

Treatment will very much depend on the stage of the cancer and your mum’s state of health physically, taking into account any other medical conditions she may have. Treatments are tailored to the individual and there is a range of treatments which might be possible.

Take care, and please let us know how things go.

Sarah xx

Hello 

we are just coming from my mums appointment. They have diagnosed her with stage 3/4 advance. It is inoperable and said it’s spread to her bladder. 

her treatment going forward is Chemotherapy weekly basis 6 weeks, Combination of two drugs once a week 6 weeks, and can take 4 hours to give

Second part of treatment is radiotherapy 5 weeks Monday - Friday - 25 sessions it’s x ray treatment - also have chemo once a week which will be a different, then that will be in total 11 sessions.

Internal therapy which is branchtherpry and in with 2 days in hospital when she recieved this. 

there prognosis are saying it’s a 30 percent chance of it being cured. I’m not really sure how to deal with that result

i feel like I didn’t ask enough questions now. Do you know many people with this stage

Hi Bexx96 

I’m sorry your mum’s had this diagnosis, but I wouldn’t concentrate on the prognosis for now, as everyone reacts differently to treatment. I never asked about a prognosis at any stage of my cancer or recurrence as I thought it might play on my mind, so try not to focus on it.

The treatment your mum will have is the standard treatment for stage 3, and there are a number of  ladies who have successfully completed it. A number of ladies in the group also have stage 4 cancer and are receiving treatment, but I don’t have numbers of how many.

I had chemo and radiotherapy, as it was the standard treatment at the time for my stage 2b cancer. I completed 32 sessions of radiotherapy and 4 sessions of Cisplatin chemo out of the 5 sessions planned. The chemo used for this doesn’t cause hairloss, but unfortunately the chemo used in the first lot of treatment does. It was planned that I would have brachytherapy treatment, but I wasn’t able to, which is why I had the extra radiotherapy.

I understand you might have hoped for surgery, but surgery is normally only possible for early stage cervical cancer like stage 1-my cancer was inoperable at stage 2b, so it’s very normal to have chemo and radiotherapy used instead. 

I hope your mum now has her pain under control and that she doesn’t have long to wait for treatment to start. It can be difficult to think of questions when you’ve just had a diagnosis, but if you want to ask anything at all in the group we’ll try and help. Your mum should also have been given details for her CNS (Cancer Nurse Specialist) and you can phone them to ask questions if your mum gives permission for them to speak to you. 

You'll need to take time to process this, but please hold onto hope for your mum to get through the treatment. 

Sarah xx

Hello 

thank you for getting back to me, 

yes your right I probs shouldn’t of asked the prognosis as it’s played on my mind. But like you said there’s plenty of women that going through this and have also been successful so I’m holding onto that hope. 

We are currently waiting for a bed in the cancer unit hopefully tomorrow so they can get her to manage her pain and symptoms better. And to also get chemo started asap. So I’m happy they are trying to get things done quickly. 

They want to put a tube in her kidneys as they are not working properly due to the tumour blocking the tube. 

Hope your mum is doing ok

i just wanted mention I had the tube fitted 5 weeks ago as the tumour was causing kidney problems and it made such a difference with pain and passing urine , my bloods coming back with good results kidneys

I have a follow up with tube in July 

hope this works well for your mum 

I was diagnosed stage 3b and started treatment a week ago 

Hello 

thank you for taking your time to reply, and I’m so sorry your going through this too. 

ill pass this onto my mum as I know she’s feeling worried about the tube. And I’m sure she’ll be relieved to know it also helps with comfort as she’s not been comfortable at all. 

I hope everything goes well with your treatment and you have support around you. Kick cancers butt!