Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

Meeting my oncology team on Tuesday to get a proper plan in place. My care is moving to my local hospital (which saves us a 3 hour round trip which is helpful!) so it's all a little unknown at this stage.

Good luck with the ongoing treatment, LittleGreyCat

So sorry to hear that LittleGreyCat. Not the news you wanted. Thank goodness you can go local. Our local hospital is being extended but it won't be ready for chemo patients for a while yet.

I'm managing weekly chemo and working - but I wfh so it's a lot easier for me to manage.

Well, looks like I might be joining you all on a more permanent basis. My MRI identified a DVT in my groin area and I have been suddenly admitted to hospital for treatment and a CT scan - latter to have a closer look at the clot but also to look at my whole body to presumably provide more info on the malignant-looking mass in my vagina. The consultant popped by to say initial biopsy results definitely show cancer cells but more tests are needed to find out what type, where it started, spread, etc. I had managed to get my head together a bit but am now back to full panic mode, especially as DVT can be caused by cancer. I have always been so healthy and suddenly I'm in hospital with a cancer diagnosis. I know I'm being a wimp but this has all come out of the blue and I feel like I can't cope. If anyone can offer kind words, it would be really helpful. Thank you.

thefarside I'm so sorry you're going through this. It's just so unfair. I've always been fit and well until last year when I started having seizures and here we are now. However scary it is now, you will get through it. Because really, you have to. Waiting is just hellish though. Thinking of you

Thank you LittleGreyCat - I find words of encouragement so helpful :-) They help stop me spiralling down into negativity. I know you're going through some crap and I truly appreciate your kind words. Wishing you strength as you deal with this next part of your treatment. X

littlegrey Sorry to hear you need extra treatment, that's very rubbish but at least you know they are hitting it with everything?
far not sure if it's the same for your cancer, but once they discovered mine had spread to my lymph nodes a CT full body scan was standard practice, hopefully the treatment for your DVT can be done swiftly and you can be home soon. Has your DH thought about speaking to someone? I'm pretty sure my DH rang the Macmillan helpline just to talk things through when he didn't want to burden me with how upset he was.

Far I had a very sudden and shocking diagnosis of advanced ovarian cancer in March. I too had always thought of myself as healthy.

I won't lie. It's been shit. And I thought I couldn't cope. But as ^, you do cope because there is no alternative. It does become a little easier when you know exactly what you're dealing with and when the treatment starts.

You are stronger than you know or realise, and you will find support from here, and from you friends and family. Mine have been brilliant and really rallied round. Rant away on here. We will listen.

LittleGreyCat hopefully it'll be easier having your treatment nearer home :)

TheFarSide sorry to hear you are in hospital. I hope the CT scan provides some useful answers. Last year my CT scan showed multiple clots in my lungs (pulmonary emboli). They suspect they started as DVT, but I didn't have any symptoms. As you say clots can be caused by cancer and also by chemo. To be honest I was quite relieved it was "just" clots, but my cancer is stage IV so when I got a call to say there was something wrong with my scan I was expecting the cancer to have got worse. Anyway, the clots were dealt with quite effectively. I had blood thinning injections for about six months and now I'm on tablets. The injections aren't much fun, but obviously better than having clots. It's a lot to deal with all in one go. But as the others said, you'll cope because there isn't really another choice. That doesn't mean you can't cry or scream or swear or anything else you need to do to get through it

I hope everyone is having a good weekend

I saw this interview with Victoria Derbyshire. I like her approach, though I know others disagree. Anyway she recommends exercise to help the Tamoxifen joint pain so I thought I'd mention it.

Thank you Pepper, Twitter & Leslie. The CT scan showed that I didn't have a clot after all!!! So I was discharged after an anxious 24 hours in hospital and two unnecessary injections of anticoagulant. I'm glad they are being vigilant, but I could have done without the extra stress. I was so ecstatic to get out of hospital I almost forgot I have a malignant-looking mass - they told me the mass was visible on the CT, so sadly that hasn't disappeared or turned into something else :-( I should have an initial indication of what it is on Wednesday afternoon - they are going to phone me, I think to put me out of my misery and because I have already been told it is likely to be some kind of cancer. Then I will see the consultant face to face on Friday to discuss further.

Meanwhile, I have a worsening ache in one buttock radiating down my leg and pain all around my groin. It looks like it might be sciatica but my imagination is suggesting the cancer is spreading and pressing on a nerve ...

Thank you for sharing your experiences. It makes me feel less alone.

TheFarSide that's a relief about the clot, and I'm glad you got to go home :) fingers crossed for you for Wednesday. I'm glad they're going to phone so you don't have to wait quite so long for the initial results. Whatever it is, it will be a tiny bit less scary when you know what you're dealing with. The pain sounds unpleasant. I hope it wears off soon

Victoria Derbyshire has published a free Kindle book with various people writing about cancer. I haven't read it yet so I don't know if it's any good. But it's here if anyone is interested :)

Thanks for that link Leslie - I've downloaded the book and will have a look later. Right now, positive cancer stories are very welcome - by that I mean hearing stories of people coping and having happy times (even if their cancer is not curable).

Well, I've read the Victoria Derbyshire book - it's OK, and provides some advice that will no doubt resonate with some people. It seems to be mainly focused on breast cancer, but then again there are general points about chemo and state of mind that could apply to people with any type of cancer.

I met a local acquaintance today who very kindly offered to have a chat with me when she heard about my impending diagnosis. She's had cancer twice and lived to tell the tale. She had plenty of good advice, both practical and emotional, but best of all she reassured me that you can still have moments of happiness after being diagnosed with cancer. I know that may sound obvious to many of you, but I've been in a bit of a black hole thinking I'll never be happy again.

Hope everyone is OK.

Ah that's a shame. I suppose as she had breast cancer the project probably attracted more people with breast cancer.

I'm glad your acquaintance cheered you up a bit :)

Try not to get ahead of yourself thinking about incurable cancer. But mine is, and I still have lots of happy moments. They far outweigh the unhappy moments currently!

I hope everyone is getting on OK especially chewing - I hope you've had some progress with the hospital...

Thanks Leslie.

Hope everyone is having a comfortable week so far.
I met my oncologist today and signed my life away (aka consented to radiotherapy and chemo). Side effects sound a bit rubbish tbh, but i don't suppose cancer treatment is meant to be very pleasant! Off to get all my hair off tomorrow in preparation for radiotherapy starting in a couple of weeks!

Hi lacies. Not caught up with the thread but hope everyone is ok.
I met with the clinical trials team and there was a possible phase 1 trial I could go on providing I met the criteria. Unfortunately blood tests showed that my liver is not good so I cannot be considered for any trials.
I have started rads to tackle the breast lump which has grown huge now. I don't know how far it's spread in my liver but I have lost my appetite, keep vomiting and am turning yellow
I will lurk and post when I can. and love to you all

Hi LittleGreyCat and everyone else. I am also feeling anxious about radiotherapy.

I got more information today - the oncology specialist nurse phoned me after their Multi Disciplinary Team meeting. Basically, I have a cancerous growth in my anterior vagina with pelvic lymph node involvement (based on MRI and CT scan info). They can't name the type of cancer - they are saying it has started in the vagina and is "poorly differentiated". Next step is a PET whole body scan to help with staging then an appointment with a specialist gynae oncologist.

The MDT have advised against surgery because I am relatively young (55) and it would have far-reaching effects (not sure what she means, but I am assuming effects on surrounding organs like bladder and bowel, not to mention losing my vagina). Also, surgery may not get rid of the cancer!

So, I am totally freaking out because in my head I was hoping for it all to be cut out and cured. The news that pelvic lymph nodes are involved is scaring me. Does anyone have any experience of whether radiotherapy can treat cancer in lymph nodes and stop it spreading?

I am due to see the local gynae consultant face-to-face on Friday - I don't think he will be able to give me any more information, and will just be handing me over to the gynae oncology specialist in another hospital.

Any words of reassurance will be welcome, as I have interpreted the news as meaning I have an inoperable fast growing and spreading cancer and a much reduced life span! :-(

Oh bugger bugger bugger chewing I wish I had something useful or insightful to say, but I don’t. Is the radiotherapy causing any side effects? And are you on antisickness medications? I know your hospital has been pretty useless but please keep demanding whatever you need. Or ideally get an assertive friend or relative on the case! There are something like nine types of antisickness medication. They are not all suitable for everyone, but there ought to be several types you can take to try and get on top of the vomiting.

LittleGreyCat hopefully you won’t get all the side effects listed

TheFarSide I’d been wondering how you got on. I’m glad you have some information, but sorry it’s not as straightforward as you’d hoped. It sounds like it’s not inoperable, so much as they’d prefer to treat it by other means to avoid potentially a huge impact on your quality of life. I know it’s much easier said than done, but try not to panic. From what you’ve said there’s no reason to think it will have any impact on your life expectancy at this point. I know there’s no one on here with any sort of vaginal cancer, but lots and lots of us have had lymph node involvement. It’s very common. The whole point of lymph nodes is to try and catch anything nasty that’s floating around. So the fact they have done is a sign they are doing their job properly. I don’t know much about radiotherapy. But hopefully someone more knowledgeable will be able to answer. And hopefully when you get to meet the specialist they will be able to give you more information. For now just try and be gentle with yourself do you have an appointment for the PET scan?

Leslie you are so kind and reassuring, thank you so much. You and others on here have been through so much, and I know I am overreacting. I will get myself together again at some point.

No appointment yet for the PET scan - should be within one or two weeks, then I will see the gynae oncology specialist at last for information on the treatment plan.

Sorry to read your news Chewing - I think things can be much harder to cope with when you are also feeling physically ill.

Jeez.... life is just so shit sometimes - and especially here.

Chewing so sorry you don't have better news. Vomiting and turning yellow is not such a good thing. I think of you every day and send lots of love and good vibes. I sat in chemo today trying not to panic and cry and faint as the 1st vein blew then the 2nd didn't work, then they faffed around with it.... thinking "WTF are you stressing about TQ?! You're being treated.* Just shut up and put up.

Far a listening ear and a hug for you. You are indeed young (I'm 58 and still a babe).

You’re not overreacting TheFarSide of course you’re worried. It’s especially difficult when you’ve got such a long wait to get a proper answer! I had a PET scan last year. You’ll be radioactive for a bit afterwards so you’re meant to avoid small children and pregnant women. I found it quite exciting to be honest. I try to see the fun/interesting side of procedures seeing as they’re necessary :)

TwitterQueen I’m sorry to hear your veins are being troublesome again!