CANCER SUPPORT THREAD 60! Here we are again... join us if you have any sort of cancer (or if you're waiting for cancer test results)

[WhatWouldLeslieKnopeDo]

Welcome everyone to a shiny new thread :)

It's a club nobody wants to join, but if you need us, you are more than welcome. If you're waiting to find out if you have cancer or not then pull up a chair. We hope you won't need to be here long, but we are here as long as you need us. And if you do have cancer then this is the place for you. Swear, rant, scream, laugh, cry... someone will have at least an inkling of what you're going through!

We only have one rule, which is do not Google. Though perhaps we should update that to please Google responsibly as few can resist completely!

I hope this thread will be a source of support for all who need it

Our previous thread can be found here

Morning all.

I became an auntie to a new niece late yesterday evening! Though nothing says 'you're going to die soon' than your sister using your name as her new bundle's middle name Hopefully not too soon eh?! She's got a lovely full head of hair unlike me as well!

Mrs glad you've finally got somewhere. Can't believe how frustrating it all can be.

Lesie I hope you're on the mend asap. Sounds really horrid.

nicky glad the chemo is doing its thing. I imagine there's nothing else than putting that stuff into your body and it not having the desired effect. Can't say I'm looking forward to my chemo next year!

Hand holds and cake for anyone who needs it!

diamond that's only natural. Once you have facts at least your imagination can't go quite so wild!

nicky that definitely sounds a win. Great news

mrsrhod grr she sounds awful! Obviously not cut out for this job

Waving to everyone

I'm back in hospital - suspected chest infection. I've had my toast

Congratulations LittleGreyCat :) it's quite sweet about the name, though I can see why it's a bit eek too. Maybe she would've used it anyway? I hope your sister and niece are both recovering well. And that you don't have to walk to radiotherapy today!

Morning all a congratulations to littlegreycat on your new niece. Yes I can understand how you feel about using your name but maybe she would have used it anyway. It's so easy to read a lot into simple acts. When I was first diagnosed I got very sensitive about people taking my photo, I always felt they were doing it to remember me by. I was being daft of course, not that you are being daft.

I've had a call from one of the other breast nurses who picked up my message about the hysteroscopy results and suggested surgery. She's going to speak to the oncologist when he next visits on Tuesday to see if he wants to alter my medication. I asked about zoladex and she's going to chat to him about it.

So, is anyone reading having zoladex and how is it? The nurse was suggesting it gives a different menopause to surgery and she wasn't making it sound great without giving any details. I'm off for more reflexology this afternoon, no joint pain today but it will be nice for stress reduction!

Leslie Sorry to hear you're in hospital. I hope you are comfortable and your chest is easing

Little GreyCat Congratulations on the arrival of your niece.

mrsrhod I hope you enjoyed your reflexology and it took your mind off the way you are being messed around.

Hello ladies. Congrats on new niece, Little Cat. Sorry you are in hospital, Leslie. I finished radiotherapy two and a bit weeks ago. Am still struggling with fatigue. There is a constant low thrum of fatigue which then ramps up to feeling sick and unable to do anything for about three hours which also includes going freezing cold and boiling hot. Skin is fine though - hurrah! The supermarket shop seems to finish me off completely and I seem to be having good days then bad days so yesterday was ok, today not so good but not awful like Saturday was.

Have been on half term so due back on Monday and really struggling with the guilt of possibly not going in next week. I've asked the oncologist to sign me off next week and then will see. Am just wondering if this fatigue will ever go. Have just counted up the sick days I have had so far from diagnosis in April, and for four operations and one lot of radiotherapy I've had 45 days off so far. Just wish I didn't feel like I'm a flake and so sodding guilty.

Flying that sounds awful. I hope it improves soon. Have they given any advice on how to cope with it? You have no reason to feel guilty as you’re clearly not in a fit state to work. Actually if you go in when you’re not well it’s probably more inconvenient for them than you being signed off! :) take the time you need to recover now as otherwise you might take longer to recover

wombat good luck today

mrsrhod I’m glad you’ve got a more helpful nurse on the case now. Hopefully the oncologist will be able to give you a plan and some reassurance. And I hope you enjoyed the reflexology.

I am still in hospital but hoping to go home today. I need to as I’m having a party tomorrow!

Love to all

Hope you manage to get out for your party Leslie I was supposed to be off work this weekend but I’ve somehow managed to accidentally book the wrong weekend off looks like my sons dad will be taking him to the fireworks on Sunday

We came back from teenage cancer unit yesterday and return there Monday. She has Stage 4b. Hodgkin's lymphoma and it's in her lungs. Chemotherapy starts next week. She has made them delay against advice so she could rest at home first rather than ploughing through. We may end up in hospital 9 days each 21 days. Not sure yet but she is very poorly so coming back and forth very hard. She's such a star. She's 18 years old and had to decide in 30 minutes if she wanted to delay (against Consultants advice )by 2 weeks to harvest eggs. He wanted to start that very day. We have delayed by 6 days just so she can breathe.

carbuckety has she had any support from CLIC Sargent? They go up to age 25 and helped me when I was first diagnosed. A few days breathing room sounds necessary I hope the chemo goes well

Oops purple that's a shame!

I'm home now. Phew.

So sorry to hear that Carbuckety it's going to be tough for both of you. I think a few days to breathe is a good idea.

Leslie glad you're out. Enjoy your party!

Hi, I posted a couple of weeks back and now have my results, atm I have been diagnosed with Stage 1 breast cancer, 11mm aprox but because of my age they want to do an MRI cus its not clear and the biopsy doesn't tell them where it is in the breast? I don't know. So after that they can decide the treatment but minimum is lumpectomy, radio and tamoxifen. Anyone with any advice would be great x

Thanks Twitter :)

BringbacktheNews I'm sorry about your diagnosis, and that you're still waiting for a definite plan. Do you have an appointment for the MRI yet? I hope you won't have much longer to wait to start treatment. Sorry it's not my area of expertise, but others have had those treatments so will be able to answer any questions

Hi Bringback. Lumpectomy is a day case and assume they are doing sentinel lobe biopsy too. The latter causes more gip than the former. Get in some soft pull on crop top bra thingys. I gor mine from Tesco. Also a cami with in built support for sleeping in at first. Get in paracetamol and neurofen. Even if you don't feel pain keep up the four hourly pain relief egime for the first few days. You may need a more supportive bra for car drives and walking. I got a really nice mastectomy one from Debenhams - you get tax relief on them and although I didn't have a mx, they have a smooth cotton liner so good against scars.

For the scars I have found aloa vera really good and Aveno moisteriser during rads. My skin has been great during rads.

After the op and also for rads. Drink loads of water. After the op you will have the joy of turquoise aqua wee - tiz rather fun! Ensure you do the exercises for shoulders and arms.

Showering. You can fashion a waterproof boob pelmet out of a folded plastic food bag taped on with surgical tape. Boots waterproof dressings are good. You will land up changing your own dressings. The bc nurses say they will contact you...they don't and I had only one contact after one of my four ops (the fourth one by which time I was an old hand).

I was back at work four weeks after my first op (had three weeks off then holiday for half term for fourth week). I was driving ten days after each op - get a compression sleeve tubi grip thingy to put on the affected arm as it really helps ehen driving.

Pm me any time if you want support, hand holding or any questions. Going in for results is worse than any op.

carbuckety I just wanted to send good wishes for your DD. She sounds very sensible.

Leslie I'm pleased you are home and hope you enjoy the party

Bringback Sorry to hear about your diagnosis. I imagine everyone is different, but my friend was diagnosed with the same last year. She had the lumpectomy in Sept 16, went through 2 lots of chemo and 3 weeks of radiotherapy. She is taking tamoxifen. She has just had her 1 year check ups and is cancer free. She found the second chemo very tough but says she feels better than ever at the moment. Sending you good wishes

I had my MRI scan today. It actually turned into 2 scan as when she had finished, she said she was going to get a doctor to check the images and then returned and gave me an injection of contrast dye and did further imaging. Don't know what that means but I think it must be better than being called back because the images weren't good enough.

Hello all,
Sorry I’ve been in a bit of a hole this week. I’m really nervous for next week's first chemo session so have done my usual retreat into my sofa under a duvet act. My sleep has been horrendous and I finally called my lovely GP who saw me promptly and I have got a script for zopiclone.

I really really don’t want to take them, so left with pharmacy and said I may collect them tomorrow. But equally I’m so fucking tired, that I think I might have to do it.

I guess this is normal but I hate feeling so bloody worried. I am confident and happy with my care, but it’s all such an unknown for me too.

I want to scroll up and speak to each and every one of you, but I genuinely haven’t got the energy. But please understand that I’m thinking of you all and hope that everyone is as well as can be.

Biscetti I know you don’t want to rely on sleeping pills but the chances are if you get some decent sleep then you’ll start feeling better and be able to think a bit more clearly, I haven’t had chemo (yet) so I don’t have any advice on that but I hope everything goes as well as it can for you

I'm glad they let you out to party Leslie. I hope you feel up to showing off your shoes and having a little celebrate. carbuckety your daughter sounds awesome. I hope when she gets into treatment, she feels stronger very soon. bringback I don't have any advice as I'm not a bc patient, but sending you lots of good wishes for the start of treatment. Hope you get your MRI back soon wombat - definitely think it's better to get it over with in one hit. Biscetti - I've had quite a bit of chemo of various sorts, so I might be able to help if I've had what you're having? In all the cases, it was much less bad than I was expecting if that helps at all xx

biscetti Take it and get some rest. It is so hard. You are in my thoughts

Thank you nicky

Purple thank you. Having had yet another horrid night I think I will collect them and take one tonight. Even if I limit to one night at week, then I may get into a better sleep pattern.

nicky I’ll be having cisplatin and vinerolbine (?). And yes, that one sentence does help.

wombat agree that getting stuff over and done with is good. Hope wait for results is quick.

carbuckety wow your daughter sounds amazing. I have everything crossed for you and her when treatment starts.

Leslie so pleased you’re out. Long may it stay this way.

Bringback I’m so sorry you’re here. I also send you good wishes for treatment.

To everyone else, sending you all good and happy vibes and wishing all a good weekend.

Hi everyone, hope you don’t mind me posting on here. It isn’t about me but my mum. This may be a bit long!
In September my mum found a lump on her abdomen when showering, kind of in the belly button area. The GP thought it was a hernia and sent her to the hospital who also agreed with this diagnosis and kept her in for surgery the following day. Surgery went well, however the following day the doctor sent her for a CT scan. When the results came back they told us it was not a hernia, but a growth and the scan also showed nodules on the lung, liver and stomach wall.
This news absolutely floored us. Mum is 75, but a young 75, she still works a bit, she’s always cleaning, cooking, gardening, she helps with childcare for my 6 year old. She has more energy than me in my early 30’s! She hadn’t felt unwell at all, aside from feeling slightly bloated but put this down to a stomach issue she has.
They couldn’t tell us what it was until tests had been done on the mass that they removed and they discharged her from hospital.
She returned for the results a week later where she was told it was a cancer, but a very low grade and slow growing cancer, believed to be gynaecological, but as the doctor she saw wasn’t a gynaecologist he couldn’t really give any further information, only that he would refer to gynae.
Fortunately the appointment came through a few days later where the gynaecologist told her it was a very low grade ovarian cancer, he said her results were due to be discussed at the next MDT meeting but usually the treatment is hormone therapy to keep it at bay, possibly surgery. Chemo is useless on this cancer as it isn’t aggressive enough. He says the hormone treatment works well and ladies usually go on for years without a symptom. Some ladies never even find out they have this cancer and can live with it and pass away from something unrelated.
The following week she was able to see the gynae oncologist, the doctors at the meeting had decided no surgery needed, and the best treatment is hormone tablets. He was very positive about everything and has basically told her to take one tablet a day and carry on with life as if nothing happened. She is to see him periodically for a review, and will have to have scans to check on things. No one has since mentioned the nodules that were seen on the scan.
Obviously we were all delighted with this news as it seemed so bleak at first. Mum continues to feel fine, no side effects from the tablets and she is back to going about her normal day to day life. She is going back to her little cleaning job soon.
However, I can’t help but think it’s almost too good to be true, and that they must’ve missed something. I think/hope that is my anxiety talking. I plan to go to her next appointment so I can ask the doctor some questions myself.

Lots of good luck wishes to everyone else on this thread going through treatment or waiting for tests and results

Hi littlebird, sorry about your mum but welcome. This isn't something I've ever heard of either but sometimes we just have to trust the doctors. Maybe you could liken it to prostate cancer which many men get with age, my lovely fil included. He was told he would live with it but die from something else, which turned out to be true. Medication kept him going until his heart gave up in his 80's and it does don't bother him too much.

I probably don't need to say this and you know your mum but unless she wants answers be cautious about what you ask the doctors. Some patients want to know every little detail about what's happening and what will happen. Others are satisfied to know that there is a plan and don't want to delve too much into the future, I'm in the latter camp and would not be happy if someone else started asking questions I didn't want answers to. Take your lead from her even though it might be frustrating. I hope she continues to do well.

It didn't bother him too much that should have said

Hi LittleBird. Do you know the technical term for your mother's diagnosis? It's certainly true that there are some low-grade tumours with abnormal cells where giving chemo kills more patients than it cures. And hormone treatment can slow the growth of tumours. It sounds as if you'd like her to have more surgery to remove the nodules in her liver and lungs. Have they done a biopsy? Sometimes nodules are totally benign or even disappear in time. I expect they will be checking on them when your mother has her scans. Doing unnecessary surgery on her liver or lungs could cause her more harm.

I can understand why you are worried, but I think it sounds as if you are having a delayed reaction to the initial shock of the lump and waiting for results. It really does sound very positive.

I was in a similar position with an ovarian tumour which was initially diagnosed as malignant - by a gyne- later corrected by a gyne-onc to something similar but with non-invasive cells. I couldn't believe my luck either and was quite obsessive for a while in reading up about it. I think it's often more difficult to be the relative in these situations than the patient. She will be closely monitored and she is being treated.

I agree with Mrshod. Take your cue from your mother. If she is happy with their approach, it would be a pity to undermine her confidence.

Flying Thank you so much, my head is all over the place and I am being strong for everyone else atm - so the practical stuff is really helpful n makes my head switch to rational mode x