CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

Happy Easter Lacies!

Unfortunately my MIL does have breast cancer too. Fingers crossed it's been caught early as she can't feel it. She initially went to the GP with some thickened skin on her breast, from what I can gather this isn't related to the cancer and is something harmless, but they found the cancer on ultrasound. I'm trying to reassure her, and hoping she won't need chemo, but she doesn't seem to have much info yet, and I guess she doesn't really know what questions to ask. She's asking me, but of course I can only tell her my experience which is probably not going to be the same as hers.

Sorry I didn't mean to imply a link between cancer and low Vit D, only that a lot of people in the U.K. have low levels because of our latitude, spending less time outside and food not being as nutritious as it might be. And if you have dark skin it's harder to make Vit D from sunlight. Age makes everything worse of course!! Calcium is different.

Would there be a reason that a deficiency would start after a cancer diagnosis? My GP suggested in a very non committal way that my body wasn't absorbing nutrients because my tumour is causing quite bad IBS type symptoms. I am amused that my body isn't absorbing the nutrients it needs but is sucking up calories like a dyson.

I am out in the sun far more than before my diagnosis as I am not working and I am eating healthy to the point of obsession

Fresta I am sorry about your MIL's diagnosis

Hi all, popping in again to catch up, lots to read since I was last here!
Welcome twinsetand Anna vitamin D helps the immune system so there are some links between lack of vitamin D and cancer progression, but I don't think there is enough research to make a clear link.
Leslie hope you are feeling better
Fresta sorry to hear about your MIL.

Mrsrhod chewing royal argy flippy
hello and hope all is well with you guys - and anyone undergoing, waiting or post treatment.

I've had my usual D&V reaction to chemo and have thankfully avoided an overnight stay but been up to the hospital every day again. Neutrapenic again with incredibly low count so I've had a fairly boring week of quarantine.
My nails are looking awful, they have ridges, thick yellow sides, white patches and I have a horrid feeling my pinkies are going to fall off (the nail not my finger) Is there anything I can do or is it too late?
My feet look like they have turned stone too and I'm having reflexology tomorrow- poor woman will probably suffer lacerations from massaging my feet!!
Ah well the joys of chemo only one more session to get through.... counting down the days.

Halfbaked I'm sorry you've been so unwell .And you're not even complaining ! But nearly there - willing you on .

Tw1nset ...I've no insight to offer but huge sympathies .Could you talk to the consultant/GP /a specialist nurse if you have one ,ask to be referred to a dietician?

I had a big cancer related op which involved my digestive system and there was a great deal of focus on nutritional intake and building weight up before the op .I had to drink special fortified drinks for a week I think before the op .I got the coffee flavoured ones and mixed with real coffee .I was told to "fill my boots " prior to op ,forget healthy eating but get the calories down me .

Recovery from surgery burns a lot of calories and it's important that you're going into it as well fed as you can be .

Love and strength to all those lurking in fear and anticipation and to everyone struggling .

sunny I could ask for advice from a dietician. I hadn't thought of that. I may do that when I go in for my surgery as I will be in hospital for 4 days at least.

I have the carbohydrate drinks too, I try to stick to a low carb diet as I had gestational diabetes when pregnant and I overhauled my diet as a result and it kind of stuck. It feels very odd therefore to be stuffing myself with carbs, particularly as I am overweight

halfbaked no ideas about the nails. Mine are a bit ropey but am hoping the calcium supplements will sort it out.

Can you get some nice hand cream or treatments? I like aveda's hand cream which is called " hand relief" as well as making my hands nice the name makes me laugh. I guess it also can't hurt to eat lots of calcium rich foods.

Tw1nset if I were you I'd start the ball rolling now about the dietician,you probably won't be feeling very proactive after surgery .

I do sympathise - about waiting for the surgery ( horrid ,horrid place to be ) and about the weight . I had some of my stomach removed and I did think good oh at least I'll be slim .Am I heck .And I'm deficient in lots of things !

sunny my surgery is Monday so I thought it might make sense to request to see a dietician then as we can take into account surgery recovery from my diet. If my tumour is causing problems , my issues might be different post surgery - but maybe you are right and I should get the ball rolling

Welcome Tw1nset but sorry you've had to join us too

I've got bowel cancer.

What surgery are you having? The thing about bowel surgery is that your bowel still has to do its job even while it's recovering, so you have the double whammy of surgical recovery and also a bowel that's going a bit haywire. Though it sounds like you're already getting that experience!

I'm recovering at the mo from a relatively minor op, just to deal with some issues I had following previous surgery.

I'd add to the hospital packing list a small cushion/pillow to hold against your abdomen for support when you move, cough, sneeze etc. (If you suffer from hayfever, dose up on tablets because you do not want to be sneezing if you can avoid it ) also make sure you have knickers and pyjama trousers that won't rub on the incision. I wore nighties and pyjama trousers in hospital to give me a bit more coverage.

When I had my previous surgeries the hospital dietitian came to see me afterwards so that may already be lined up for afterwards.

I refused to drink the special drinks as I hated them. This time they agreed not to give me any!

Re nutrients I have found the same. I guess carbs are the easiest to extract so we can get those even when our bowels are working quite inefficiently, whereas all the more useful nutrients are more likely to pass through.

Halfbaked sorry you've been so unwell again. Are you on tax? Others have had nail problems on that especially. I think it is helped by using dark nail polish, but I don't know if it's too late by the time they're showing damage. I hope the reflexology helps :) I'm sure she's seen mankier feet! Mine have been really dry and cracked. The best foot cream I've found is Soap and Glory Heel Genius.

Fresta I'm really sorry about your MIL's diagnosis. Fingers crossed she won't need chemo

Anna I hope you managed to have a lovely time with your family yesterday. I hope you get a scan appointment soon hopefully with reassuring results and I hope you get some relief from the pain too

I hope everyone had a good Easter. Sending good wishes to all the posters who have gone quiet recently. I hope you're all getting on OK

whatwould my tumour is in the small bowel. They are removing the tumour ( about 1.5cm), the affected lymph nodes and a margin. They are going to try keyhole but apparently it is borderline for requiring open surgery and so they may have to resort to open surgery.

They have warned me that my bowels won't be right for some time but they aren't right anyway and so I may not notice a huge change.

Thanks for the advice about what to pack. I was going to take my support cushions I had when pregnant. That is good advice about allergy tablets as I have a rather bad dust allergy . I am going to take lose jersey pyjamas but may pack my nightdress as well.

fresta I'm sorry to hear about your mil, it sounds similar to my case. I felt a lump which turned out to be harmless but the mammogram and ultrasound picked up a small cancer which was too small to feel at 11mm. I didn't need chemo, I'm 8/8ER+ so just lots of anti oestrogen for me after a lumpectomy and rads. I hope she has an equally 'simple' case. Still messes with your head though, at least she has you to talk to.

Hello to everyone else, waiting for surgery and results and struggling through chemo.

Can I join please? Been lurking for a while but have been in denial a bit. Was diagnosed with breast cancer at the very end of February. 2 tumours, one grade 1, which was the only one that could be felt from the outside and the other a grade 3, much deeper into the breast. Both around 1.4/1.2 cms but 4cns apart so total affected area 6cms, hence mastectomy.

Had a full left breast mastectomy and reconstruction with blue dye radiation treatment to test lymph nodes 3 weeks ago, drain was removed end of last week, finally, which was a relief.

I had a clinic appointment today with an awful registrar, not the lovely straight forward consultant that I normally see. The good news is that the lymph nodes were free from cancer but he wasn't sure whether chemo would be needed as that is down to the oncologist who I won't see for approx 3 weeks, more waiting, which is so frustrating. Does anybody know how likely it will be that I will need chemo? Both tumours are oestrogen receptive so will definately be having tamoxifen.

Such an awful journey to be on and I take my hat off to everyone on here.

Thanks to everyone for answering my questions before. I just wanted to update you (I don't think I have before!?) I've been properly diagnosed now and have a very fast growing triple-negative Grade 3 IDC in one breast with positive lymph node. I'll be having Chemo & double Mastectomy.

I'm still waiting for the CT & Bone scans as I have a lot of pain in my back, sternum and when breathing. ☹️

The hospital have offered urgent CT (& bone scan) rather than PET-CT. I understand the basics of how each work, but was wondering if I should push to have the PET-CT instead but at a later date or just wait and see the results of the CT then get PET-CT privately afterwards if I'm still worried?

Hello there, please forgive me as I am jumping into this thread without reading any of the previous posts and for a totally selfish, all about me post.

My mil has today been diagnosed with cancer if the small intestine. The tumour is quite large, so not all of it can be removed. She is having an operation tomorrow to have a stent inserted into her bowel. Afterwards she will be able to have chemo. I have been really worried over the last couple of days about her, the not knowing seemed worse than today's diagnosis.

Dh, fil and mil are all very stiff upper lip and don't like to talk about things that will be upsetting. I find this hard sometimes as I just want to burst out how I am feeling and talk to them about how they are feeling too but I hold back as it doesn't seem the right thing to do.

We have 2 dds, 10 and 11, and I plan on telling the, tonight I really want to stress to them about talking about how they feel and not bottling it up. It will be heartbreaking, we are all such a close loving family. Mil is a very hands on grandma and very much loved.

I don't know what I am asking for really, I don't know what I should or shouldn't be doing, it really has knocked me for six. I know nothing about cancer, I am trying to refrain from googling. Mil seems to relecutant to tell us what stage the cancer is at, which I understand is entirely up to her. I just want to help and be there but without saying or doing the wrong thing (I have form)!

Dosey my tumour is also in my small intestine,although it is a NET tumour and so slightly different to a more common form of cancer.

I think cancer is more rare in the small intestine. I could be though as my knowledge is related to my own condition. The Macmillan and Cancer Research websites have some useful information.

Has she had a history of stomach/ bowel problems?

I meant to say as well dosey that she probably doesn't know how far the cancer has spread if she has only been diagnosed today. I had a wait of a few weeks between being told that o had cancer to knowing where it had spread to.

Thank you for your reply twin, it is a rare cancer yes. She has had stomach problems since November but was only tested for cancer when she had some blood taken a few weeks ago. A tumour was then detected during a colonoscopy. She has had a ct scan, would that show how far the cancer has spread? She's also had a camera up her bum (sorry I don't know the official medical,term!)

I have had just about every scan known to man all of which seem to give a different piece of the puzzle.
My tumour was first spotted in the colonoscopy - camera up the bum. I then have had ultrasound scans ( check my thyroid), CT scan which I think gave them the big picture - they were looking for tumours elsewhere in the digestive system and the liver. I then had a PET scan which I was told would check for tiny signs of cancer that the CT scan wouldn't pick up.

I am not sure if it was the CT scan or the PET scan that picked up the cancer in my lmyph nodes.

In addition I had lots of blood and wee tests

Dh got back from visiting mil and was quite shocked by her blood pressure reading of 210. She's needs another blood transfusion and having the camera down her throat again tomorrow as well as her stent operation.

I have spoken to my girls. One cried her eyes out and the other went quiet. I don't know if I said the right things or answered their questions correctly. We had hugs and tears.

I can't quite believe what has happened today, I feel like I am watching a weepy movie. Dh has sat and had a natter with me and opened up which I am so pleased about.

I am so sorry for all of you going through this. Until today I was ignorant to cancer. It has come along today and kicked me right up the arse.

I need sleep now and see what tomorrow will bring.

Hello everyone ,
Daxaki, I am not sure re the PET/CT scan difference , I was only offered CT scan but my BC is also very fast growing and big too I think because of that I was advised to have chemo first , one said to try and shrink it and also to kill any cells that have escaped, I was really keen to have surgery first which would have been a mastectomy , I have had two rounds of FEC and have one more then three Tax before surgery,

I was also so anxious as all the testing , etc is so stressful but now on the treatment path feel more in control ,
Now I look sick as I resemble Friar Tuck when I look in the mirror with so many bald patches ! Cancer is a bastard no doubt and love and strength
to all going through it

When I asked I was told that the CT scan would pick up the tumour and anything wrong at a body level ( there is probably a better word for that) where as the PET scan picked up cellular changes.

Morning all. Been away to see family for a few days so need to catch up on all these posts. for all.
A quick question for those on Herceptin - do you have a heart check up before each treatment session or is it less regular? I don't seem to have these appointments booked yet a lady who also started it at the same time as me had all her appointments already booked

Hi everyone, just a quick response to Chewing and I'll come back later - yes, you should have a MUGA scan for your heart before your first Herceptin and then regularly afterwards - my hospital re-check after every 4th cycle. HTH.