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

Thank you tw1nset some good tips there. Focus on the good things that are available all around us.

Thank you all for you lovely messages. I was worried about being so woe is me, particularly as don't even know exactly where I stand at the moment. I just need to know now though. I think it is the thought of telling my children if it is bad news that terrifies me, they are still so small. I can't even contemplate not being there for them.

Thanks for the tips and support to get through the next week. My husband is a much more positive person than me, so that helps. Haven't really told anybody else yet but might consider letting my closest friends know. A couple of them have a lot going on themselves and am worried about burdening them further.

I like the idea of getting through things in half hour stints though - will definitely give that a try when things are bleak.

Hope everything goes well for you tomorrow wishing

Thanks gold hang in there too xx

wineoclockthanks

I decided against reconstruction which I felt was very much not the norm. In fact, I know that option isn't even presented as an option. If it would help, there's a new charity and a private fb group where you can get lots of help and information. It's good to even just be able to chat to others who don't look at you with incomprehension!

I was diagnosed with TNBC in 2013 age 51. Weekly paclitaxol for 12 weeks, WLE, 4 AC chemo and 20 rads. Recurrence in 2015, mastectomy with no reconstruction.

Don't often post on here (mainly stay on the LCHF diet boards) but I do read about how you're all doing

Hi everyone
Leslie thanks for asking about me I am still going through the neoadjuvsnt chemo trying to shrink tumour before surgery
Diagnosis grade 2 er positive her neg end of feb this year also o am on a trial taking hormone therapy at same time
Fec has been harder third time felt pretty sick and tired have definitely had those feeling sorry for myself days starting the tax three rounds on Monday
Hair gone now despite cold capping but I got a hair topper but nothing to clip on to so am so scared it will. Blow off in the wind I try headbands etc but I am now going to get full wig as looks like I need it fir a while
I always read this thread and feel it's a great support plus I have learnt so much which has helped me and my sister who has also bc in the uk

Hi everyone and thank you Leslie for starting the new thread.

Quick recap. Diagnosed at 43 with 80mm high grade DCIS November 2015, plan was mastectomy (also without recon) and no further treatment. Path results revealed weakly multifocal ER+ Pr- Her2+ IDC and two positive nodes. Treatment plan changed to ANC, Fec/paclitaxol chemo, rads and Herceptin. Last Herceptin was a month ago. I was born with heart disease, had heart surgery aged 39 the doctors were unsure with how I would cope with treatment but my EF stayed over 50 (just) and with the help of four heart medications a day I completed the course. Just trying to get my life back now and looking forward to summer.

Hi all I wanted to ask those of you who are dealing or dealt with bowel cancer was nausea a symptom ?
Only really come on in last few days . Going a bit crazy with worry at the moment . Haven't even got an appointment for colonoscopy yet seeing consultant tomorrow hopefully he will fit me in soon before I go crazy !

VLCos I didn't have nausea at all prior to diagnosis. If it's only just started, might it be anxiety? I hope all goes well tomorrow and that you can get an appointment for the colonoscopy soon

Hi Mysillydog lovely to hear from you :)

@WhatWouldLeslieKnopeDo thanks for your reply :-) could be anxiety . I have also been messing with taking omeprozole stopping and starting it could be that. The mind goes crazy I suppose.
I was just worried about a blocked bowel but bowel seems okish today am sure symptoms would be much worse if my bowel was blocked . Ill mention it tomorrow. Have wrote down my symptoms for consultant as I tend to forget things

@VLCos I don't think I had nausea. Hard to tell as I had awful morning sickness all the way through my pregnancy. Once my son has arrived though I am sure I didn't have nausea. I do get nausea with anxiety though.

@Tw1nsetAndPearls thanks for the reply :-)

I think you'd definitely know if your bowel is blocked. It would be very painful. I haven't had a physical blockage but I've had paralytic ileus a few times. It really hurts. Your mind will be overdrive at the moment so you notice every tiny detail that normally you wouldn't think about. I hope the consultant can give you some reassurance tomorrow it's a good idea to write everything down

@WhatWouldLeslieKnopeDo I think you are right stuff I would normally brush of I am zooming in on . I appreciate everyone's kind words. Ill come back and let you know how I go

VLCos I am the same with my worries about Bowel Cancer.
I am at the moment having the urge to go to the toilet but when I go nothing is coming(I will have already been normally earlier on)and it feels uncomfortable like there is something up there-so my mind is now telling me its because of a tumour making me feel this way!(I have also read this is a early sign of BC) so yes my mind as also gone into overdrive and like you I am still waiting for a letter to come through telling me when my Colonoscopy is.
It's good you are seeing your consultant tomorrow as you can voice your worries and hopefully they can put your mind at rest a little and maybe give you an idea when your Colonoscopy will be.
Do come back and let me(us) know what they said.

@charliebear78 hi thanks for your reply ! I can understand your worries. Does the 78 mean you were born in 78 ? I was . Gp keeps saying you age means you are low risk . But I know cancer isn't choosy about age. Did your gp refer you as routine ? Mine did because I have had no blood. I am managing go get in with the consultant quick as I am willing to travel
quite a way.
Strangely I don't have the symptom you do . Do you have any other symptoms at all ? If you don't mind me asking.
I go from constipation to loose and sticky . Don't go for days then go 5/6 times a day. Low stomach ache, lots of wind, lower back ache left side , yellow mucus in stool and nausea which is a new thing might not be related !
My mind is going a bit crazy . It doesn't help that before Christmas I found a lump so had to attend the breast clinic !
I hope you hear about your appointment soon. I will definitely come back to update you tomorrow . Appointment not till 3 so will update when I am home .

My summary is : went to doctors with lump and sore nipple mid August. Initial diagnosis of DCIS requiring WLE and radiotherapy. This all sounded quite neat and manageable.
MRI and nipple biopsy showed invasive cancer and Paget's disease.
I'm 43 now with two young children aged 4 and 7. My DS7 has severe autism - so what was already a stressful challenging life for us all got even worse.

Diagnosis: HER2 positive, oestrogen receptor negative, Grade 3, node positive carcinoma of left breast and possibly armpit.
Treatment: neo adjuvant Docetaxel FEC T chemo with Pertuzumab and Trastuzumab, followed by surgery and radiotherapy.

My chemo was cut short from 7 rounds to 5 as I just didn't respond well and my skin became very inflamed. Got fast tracked to surgery. Left mastectomy and lymph removal - 9/16 were cancerous.
Thought all ok, then the inflammation returned. Had 20 rad sessions and so far this seems to have beaten it. I'm 6 weeks on from my final rad session and getting back to normal as possible.
Having herceptin now but nothing else.
I also cold capped through chemo which I'm pretty sure I moaned about constantly - but did retain about 60% of my hair and the loss was quite even - if anyone needs to consider it.
I am out the other end now - I've started swimming again and feeling like I will be fitter and healthier than I was before as I really was a prime candidate for breast cancer.

Apologies for previous message...toddler fingers got hold of my phone. Have asked for it to be deleted.

VLCos I have had different symptoms since Xmas-back ache,burning feeling above belly button,left side ache,on and off constipation-but the two constants are burping all day every day and a dull ache in the belly area which when it's here can last for days....
Now of course it is the feeling of wanting to go when I can't-I am just sick of the constant worry and the different symptoms that keep coming and going-all it does is make me worry more.
I am 39, and yes I know what you mean,age really has nothing to do with it.
GP only really referred me because I kept going back and I asked them too-eventually one Doc agreed too!
It might be all in my head-but it is something that really has taken over my life right now and I need this closure.
Good luck tomorrow-will be interested to hear what they tell you.
I am wondering if I will need a consultation?
I thought you just got a letter with a date and turned up(this is what happened when I had my Endoscopy)

@charliebear78 I totally feel the same just think oh I feel bit better then wham it's back and with a new symptom!
I had an endoscopy last year and just got the appointment letter was expecting the same but GP said with colonoscopy most times you need to see the consultant and he decided how quick you need it. Was dissapointed when I found that out as just want to get it done now.
Keep telling myself if it's something it needs to be found sooner rather than later !

Sorry, I had chemo yesterday so feeling a bit bleurgh today. I won't reply to everyone because I'm bound to get in a muddle.

Wishing how did you get on yesterday?

Good luck today VLCos and ilovechocolates I hope you both get some reassurance

for everyone and sorry if I've forgotten any appointments

Tw1nset are you feeling any better?

rocket I'm glad you've been able to start swimming again :)

Re. Bowel blockages I did worry a lot. I only had ten days between my colonoscopy and surgery, and it took quite a while for my bowel to calm down afterwards. It never got back to normal. But when I started to go less frequently I kept panicking when actually it was just that the effects were wearing off! charlie that feeling can be a symptom of bowel cancer but also of many other things too, even just internal haemorrhoids or something. It might partly be because you're hyper aware of symptoms. But obviously you can just switch that off! Hopefully once you've had your colonoscopy they will be able to rule out anything nasty

@Wishingitwaswarm I was just checking in to see how your appointment went yesterday.

@WhatWouldLeslieKnopeDo Sorry your chemo has left you feeling rubbish.

I am struggling to eat, I am losing about a pound a day in weight - but I am overweight so not necessarily a bad thing. I have found that I can eat avocado and egg and so I had that for my only meal yesterday and no horrible side effects. I might gradually try and increase my range of foods - adding one more thing each day. I know I can't eat bread but DH has bought me some crispbread things so today I can have one of those with my egg and avocado. We are going away to London this weekend. I am a bit nervous of how tired I will be. I am still having at least one nap every day. We have booked a quite central hotel so I can go back for a nap if needed. I still have a quite dull achey pain near one set of stitches.

Had my clinic appt today, saw surgeon, had mammo and US. Was very impressed with the care. There's cpl of cysts, nothing sinister. Gotta go back in 3 months for repeat US. Am so relieved!!!!!
Thank you for ur support. Can I linger in this thread too?

Great news @ilovechocolates

Hi I'm new to this thread hope it's ok to join.

I had a Neuroendocrine Tumour in my small bowel removed approximately 9 months ago along with a portion of small bowel and a hemicolectomy. It had spread to the surrounding Lymph Nodes so I have been told I will be a lifelong patient and be scanned every 6 months to check for progression. My last scan was good and I'm waiting for my next lot in June so keeping my fingers crossed.

@Tw1nsetAndPearls it does get easier, give yourself time for your body to recover. I too lost weight quite rapidly post surgery (weight gain was actually one of my symptoms of the cancer) but 9 months on I have put a little bit of weight back on and it has stabilised (I could do with losing some weight but the GP have advised me to not worry about it). I found my bowels settled down when I stuck to a low fibre diet: white bread etc, small amounts of fruits with no peel or seeds, no dried fruits and only a small amount of well cooked vegetables, I also avoided hard to digest meat so stuck to chicken and fish. I now eat whatever I want but have found I feel much better if I eat little and often.