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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

983 replies

WhatWouldLeslieKnopeDo · 31/12/2016 20:23

Star Happy New Year! Star 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! :)

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WhatWouldLeslieKnopeDo · 16/03/2017 13:08

Sorry, forgot to say thank you Stila :) how are you getting on now?

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FlippyNeck · 16/03/2017 15:11

That's a great milestone Mysillydog. Dahliaa go back to your GP as many times as you need to. One of the GPs at my practice told me I'd had a chest infection when I first reported pain and a change in my breast. It's a very good job that I didn't accept what he'd said.

Minty, I hate the way that this affects our children. Your poor DD. DS and I talk a lot and I'm very honest with him, whilst trying not to scare him. I really believe that the lack of support for children is a very overlooked area of cancer care. I cannot believe that between the NHS and so many cancer charities there is so little support for under 16s. I called the hospice that supported us as a family during DPs illness and after his death and they are going to arrange some more help for DS.

Great news that chemo is working Leslie. Hope you feel ok after today's session.

I had my head CT scan today, should get results next week. I feel a bit down this week, possibly because of that, and also I asked my nurse to confirm my stage, as I suspected it's 3a. No one had ever said or put it on any reports until now, but insurance and benefits forms etc ask for it so I needed to know officially. Also it's DP's birthday this weekend so not surprising that I'm out of sorts.

My onc has said that I don't need to have a bone density scan (I'm having Zolodex) as I'll be having bisphosphonates. I'm not entirely happy about that as my mum and her sisters all have osteoporosis. Any thoughts? Also, they checked my Vitamin D level, which is 25 - anything less than that is 'low', they've said mine is just 'insufficient' (25 - 50) but they won't prescribe anything! I'll speak to my GP about it, my nurse just looked puzzled when I asked if I could/should take a supplement. Anyone got any experience or knowledge about Vitamin D?

My nurse has also said there'd usually be a 3 week gap between chemo and rads to allow for some recovery - what has everyone else experienced? As I'm not suffering too badly with side effects, I'd rather press on more quickly - the sooner this is over the better!

Yes Leslie, I did get quite a good bag of goodies from LGFB - the DSDs will get quite a few of them, but there was a very good eye liner and mascara amongst other things.

JoandtheTribe · 16/03/2017 16:10

Hey FlippyNeck

Just popping in to answer your question about supplements, etc.

I was found to be osteopenic after a bone density scan which was given routinely as I am having zoladex injections. Even though I am having a 6 monthly infusion of bisphosphonate I have also been prescribed a vitamin D and calcium supplement called Adcal.

I'm in Cambridgeshire.

All the very best for the CT results.

dahliaaa · 16/03/2017 16:45

Thank you everyone for taking the time to reply. I will mention it at GP appointment in a couple of weeks.

Flippyneck DH has started taking a basic vit D supplement since his diagnosis to help bone health. He did discuss with oncologist first. It's just the basic Vitabiotics one you can get in Boots or Holland and Barrett.

ArgyMargy · 16/03/2017 18:14

Hi Flippy I too am Vit D deficient (20) and onc prescribed Adcal. I too am having chemo in 3-weekly cycles starting next week!

Leslie I'm so pleased your chemo is working that's really great news.

Hi to all the regulars and returners; welcome to the newbies. Wishing everyone the best possible evening.

Mysillydog · 16/03/2017 20:59

Leslie I hope your chemo today went ok. I have 2 more herceptin so I will properly finish in a month. I will get a mammogram every year for 5 years, but they will post the results to me. I won't see a doctor on the day like you do at the breast clinic.

chewingawasp · 16/03/2017 21:15

Evening all.
Welcome to the new lacies although sorry that you have to be here.
Silly that's good news Flowers
Hope chemo went ok today Leslie and glad it's working.

I take Adcal too but have not been told that I am Vitamin D deficient Confused
I have started my 3rd lot of second line chemo and the side effects are finally emerging Sad I am a lot more tired and slower at walking and seem to have arthritis in my thumb joints. My onc says the hand pain is not a known side effect though so will just 'keep an eye' on it Hmm I have also started to lose my appetite which is no bad thing as I have over indulged massively in cakes and chocs since being ill.
Seeing the specialist onc tomorrow to go through the biopsy results and discuss any other possible treatment options (fingers crossed).

FlippyNeck · 16/03/2017 21:18

Thanks for the responses re Vit D and bone scan. I'm going to make an appointment with my GP and ask her about it and if she'll refer me for a bone scan. How's your post-surgery recovery going ArgyMargy?

WhatWouldLeslieKnopeDo · 16/03/2017 22:32

chewing everything crossed for your appointment tomorrow. Sorry the side effects are grim. I hope they ease soon Flowers

Mysillydog a couple of friends have been waiting for their post-BC mammogram letters. Stressful. Though I guess it's the actual results that are the main cause of stress Sad

Argy good luck for your chemo Star

Flippy enjoy your freebies! I'm glad the hospice are able to help with DS. Fingers firmly crossed for your CT results Flowers this sounds like a particularly difficult week for you. Do you have any plans to mark your DP's birthday?

I hope everyone is having a relaxing evening

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ArgyMargy · 17/03/2017 06:29

Best of luck for today chewing.

Recovery from surgery going remarkably well, thanks Flippy. I'm having physio which is brilliant for the cording in my arm. Otherwise I feel good and am trying to get as fit as possible before chemo starts. Mainly doing lots of walking.

FlippyNeck · 17/03/2017 21:55

Good stuff Argy, shame about the cording, but sounds like you're on it.

Chewing, hope today went well.

Leslie, I'm planning to take DS and DSDs out for posh afternoon tea tomorrow- it's also to celebrate older DSD's birthday. I have a new frock! It will be the first time I've worn anything other than comfort clothing since surgery!

Chemo no 5 today. It was ok, but I was on the busier unit where they have the radio blasting crappy local commercial station. Why do they do that?! Noise cancelling headphones and podcasts for me. There's a free relaxation app by Andrew Johnson (easy to find by searching by his name) that I find works quite well too.

Hope everyone is doing ok.

WhatWouldLeslieKnopeDo · 17/03/2017 22:58

Flippy I hope you all have a lovely time Cake and I hope your side effects are not too bad

Argy good news about the physio. And definitely a great idea to build your fitness up before chemo.

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WhatWouldLeslieKnopeDo · 17/03/2017 23:00

Also I don't know how old everyone is on here, but anyone in their 20s or 30s might be interested in Trekstock. It's a cancer support charity and they organise various events. I hadn't heard of them before, but someone very kindly told me about them. They also have a private Facebook group.

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rocket74 · 18/03/2017 20:32

Checking in...
Chewing and Flippy I hope you are both managing ok with your chemo and not suffering too much.
I have been taking vitamin D for a few years after a low reading but I had a really bad reaction to Adcal - hives, itching, throat closing up! It was a bit worrying. I now use the spray by BetterYou that's sold in holland and Barrett but much cheaper on Amazon.

I've been up and down. Everything seems to worry me. A routine eye exam picked up a dark spot and I went straight to thinking the worst. Saw an ophthalmologist who put my mind at rest. Also have a cough since January - starting to worry about my lungs so have a CT sometime next week.
Radiotherapy is going well though considering! Not really sore yet but do have 7 sessions to go. Still no idea if I am responding to it though or whether my cancer is saying 'screw you' yet again. I'm seeing my onc on Thursday so that might enlighten me.

My BCN has found a 'wish' grant for me to apply to for a special break. It's for adults and there is no age limit if anyone is interested too. Honey rose foundation.
Only problem is I have 3 ideas and I can't decide what is best. At least it's nice to think about a treat in the near future!

Keep well everyone Flowers

chewingawasp · 19/03/2017 00:24

Evening all
Rocket hope you will get a lovely special break Flowers
My head has been all over the place since getting the further biopsy results. It was definitely worth getting it done. It shows that I am HER 2 positive which opens up more treatment options - a lot better than none! The previous biopsy showed borderline for HER 2 with a further test coming up negative Confused. Not sure how this will affect my prognosis.
I am contacting my onc about this to ask about the treatment plan. He is not a breast specialist though so it looks like I could be changing consultant again Hmm. Having CT and MRI scans next week so it will be interesting to see what's been happening.

Hope you're all having a good weekend.

Halfbaked · 19/03/2017 10:35

Hi all
chewing I hope the clearer diagnosis leads to better treatment for you.
Twitter sorry to hear your diagnosis has been confirmed, be kind to yourself and take the time you need Flowers
Leslie great news that the chemo is working
rocket a break sounds perfect, something positive to look forward to.
mysillydog Glad the end of your treatment is in sight, but can understand how it must feel a bit daunting too.
Argy good luck with the chemo
minty and flippy I totally agree about the lack of support for children going through this. I've been very lucky to be getting some counselling for DD, but we only qualified due to a previous bereavement in the family (unrelated to cancer) I'm trying to be honest in an age appropriate way and support her, but it can be so hard.

My DB is improving, although it looks as if he will not lead an independent life again. His memory is very bad and he talks quite a lot of nonsense! Time will tell what the outcome will be.

I got the cat microchipped but can't let it out until the next injections are done. She wasn't ill, just stressed out I think.

Had Chemo #4 on Friday so feeling a bit tired and grotty today. My scan last week confirmed lump had shrunk, but if I'm honest not as much as I had hoped. They also tracked two lumps under my armpit again. My biopsies were clear previously, but I can't help but worry when they keep going back to my lymph nodes.

I'm starting to read up on options for surgery, as my appt with the consultant isn't until the week of my last chemo. If anyone had surgery post chemo, how long did you have to wait?

WhatWouldLeslieKnopeDo · 19/03/2017 19:32

rocket sorry you've had more worries. I'm glad your eye is OK. Fingers crossed for your CT. There have been some nasty cough/cold bugs this season, which seem to be lingering, so hopefully it's that. I hope the radiotherapy is doing the job, and that your oncologist can provide some reassurance Flowers

chewing that sounds promising. It's good you got the biopsy done. Fingers crossed for your scans and for a new treatment plan :)

Halfbaked I'm really sorry about your brother Flowers I hope he continues to improve. That's good about the shrinkage. Hopefully that will continue.

Waving rather feebly. I think my digestive system is having some sort of last hurrah as this is the last chemo before my op Hmm not helpful, especially as it is my friend's funeral tomorrow. I've retired to my bed to rest up!

OP posts:
DieDeutschLehrerin · 20/03/2017 14:15

Hi
I'm a newbie to this thread, although not to Mumsnet. To be honest I'm a bit of a mess at the moment.
I went to the GP with bleeding from the nipple after giving my 2 year 4 month DD a last breastfeed before Christmas. I had noticed it x2 before assuming it was a blocked duct or a little nick, but this time knew it wasn't right. I could also feel a knobbly bit behind the nipple. She was really unhelpful so I went back in January and was referred to the Breast clinic by a different GP, although the bleeding had stopped and knobble was receeding. The consult was positive, the the ultrasound was positive (knobbly bit was cysts) until the last minute when a female Dr. came in to sign it off and says that because of the bleeding, she wants to take a biopsy of the cysts.
A week later the results come back as high grade DCIS. Again though, everyone is very positive, we'll take it out next Friday, do a lymph node biopsy, radiation, off you go. Appointment with the surgeon next day - We want you to have an MRI so we'll push back the operation by a fortnight but we will definitely take off your nipple, by the way your mammogram is clear.
Last week I had MRI, Pre-op (including appt with BCN) and then surgeon clinic appt after MDT in the morning. The surgeon came in and said "It's just as well you had an MRI as it shows a 5.5cm area of DCIS and an abnormal lymph node under your arm." Initially she wanted me to wait a week for an ultrasound and biopsy but the BCN managed to sort it for the same afternoon. Needless to say, the op is cancelled because now I need a mastectomy. In the ultrasound the sonographer says the lymph nodes are normal but cannot find anything that showed up on the MRI so doesn't want to biopsy randomly. Apparently MRIs are sensitive but not specific, so it may be showing something that is not DCIS so he is going to recommend that I have a biopsy under MRI but this has to go to MDT a week later, then it has to go to MDT at the hospital where it would be carried out, then wait for appt, then wait for results. The thinking seems to be if it's not DCIS they can go back to Wide local excision. I have phoned the BCN (mine is away for a week) and said I want them to tell MDT I want a mastectomy. At this point I am not happy to keep half a breast, even if the biopsy shows the abnormality is a benign lesion. Until Thursday, I have no inkling of what the proposed course of action is.

In the meantime though I have had an appointment for a bone scan and a CT scan and I don't feel like I can take any more bad news. I am quite an emotional person anyway and it's getting harder and harder to keep the tears under control. At the weekend DH took the kids out and I read through the information the BCN gave me and made notes but this has resulted in me having really vivid, allegorical dreams. DH has just started a new job as we were planning to relocate to be closer to my parents after Easter, which is obviously now on hold but it means he is away 3 days a week (I know this could be worse). DS is back in school today after a fortnight off, vomiting followed by diarrhoea 48hrs later, followed by chicken pox 48hrs after that and blisters that refused to pop for the whole week, so the school have been on the phone, gently prodding me about his attendance, which pisses me off as I taught before I had him, so I know he has to be in school.
Everything just feels a bit shit at the moment. This has come completely out of the blue, no family history, 2 pregnancies, breastfed in total for 4.5 years out of the last 5. It just feels like every time I go in there, things get worse and I get more and more frightened.

I'm sorry, this is rather self-pitying. I am aware that things are much worse for other people and that this is mostly the fear talking but I just needed to tap all of this out and not cry to someone who is going to worry about me.

I hope everyone is having a good day. I love the positive posts at the beginning of this thread. I do go back to them and they help[ every time.

mrsrhodgilbert · 20/03/2017 14:44

Hi diedeutsch, goodness that sounds like a rats nest of appointments and differing opinions, no wonder you're feeling wrung out. Everyone here will confirm that the waiting is usually the worst part of this procedure, particularly when things don't look straightforward initially. A positive diagnosis and treatment plan strangely tends to come as a relief after all the anxiety you're currently experiencing. I know it hard but take some comfort in how thorough they are being.

I didn't have dcis but there are definitely people around who have had that, I actually thought that a mastectomy was standard treatment but that the prognosis was excellent. I had a WLE and radiotherapy so can advise on that if you do go down that route.

I'm sure some others will come along soon but you're right about this place being great for just venting when you want to give your loved ones a break. Keep posting and ask anything.

Hi everyone else, Leslie what a sad day for you, I hope you're not too wiped out.

I'm awaiting my year3 mammogram, saw the surgeon a couple of weeks ago. They took blood to see if I'm ready to move on from the tamoxifen. I've read that you should have a bone scan before taking anastrazol, did anyone have one, it's not been mentioned?

pepperrabbit · 20/03/2017 21:40

Evening all, I've been awol as we've been dealing with FIL's funeral and general life.
Sorry to see so many newbies here, apologies for being rubbish at name checks - normally I can only remember the last post I read as soon as I start typing..
mrs I had a bone density scan before switching from tamoxifen, I'm on letrozole. They described it as a base reading? I have 6 monthly bisphosphonates (zoledronic acid) which they've confirmed will be for 3 years.
My Vit D was low and I spent 6 months on prescription levels (Fultium D3 it was called) Like others no more prescriptions now it's "normal" - I think it took 6 months to get up to 55? And that was over the summer!
I asked my onc about all these things - he said I should definitely take an OTC supplement, his exact words were "even if it's only 1000 iu a day" which was helpful when reading all the packets! he suggested calcium as well.
Anyhow, chewing I'm so glad there appears to be more treatment options for you and I hope the chemo side effects wear off soon, leslie hugs for tomorrow, very sad, but good news your op is soon (can I ask what they're doing? Is it to remove cancer or to fix previous damage? Don't answer if you don't want to obviously!).
Waves to all the lacies Flowers
As an aside - I've put on half a stone since switching to letrozole Shock only 2.5 months, looks like the chemical menopause has really shifted my metabolism. Not happy about this at all Angry

bobdylannumber1 · 20/03/2017 21:48

DieDeutschLehrerin,I haven't posted or looked at this site all that much recently, but I couldn't look at your post and not reply, I was diagnoised with Paget's disease (nipple cancer) in October 16 I had red rash on my nipple referred to breast clinic in September breast clinic said after biopsy looking like Pagets then had to have another biopsy to confirm I had Paget's and 3 to 4 cm of DCIS, I was devastated, I had a WLE a few days before my birthday In mid October I was so upset but yes the waiting was the worst as I had to wait ages for confirmation, I asked the Dr if mastectomy would be better for cosmetic reasons he said no, I didn't get clear margins so had further WLE in November got clear margins 2 weeks later, I had 20 sessions of radiation throughout January finished that on March 1st, my breast looks grand looks like I've had a lift compared to the other one my Dr said he would sort it out when I go back early summer, dressed there is No difference I might get nipple reconstruction sometimes I'm upset about my nipple sometimes not, but I do think I'll do nipple reconstruction, it really wasn't as bad as I thought it was going to be I will be just fine and so will you all the best xx

mrsrhodgilbert · 21/03/2017 09:03

Thanks pepper for that info. Actually as my memory is like a seive these days I'm not sure if I'm going onto anastrozole or letrozole. The surgeon arranged the blood test last week to check my hormone level, I haven't heard the result yet, but he said if appropriate he would prescribe the next drug or he would get my gp to . There was no discussion about bone scans, cholesterol checks etc. Bisphosphonates haven't been mentioned either but I don't think it would be appropriate for me. I'll have to ring my bcn if a prescription turns up with no initial checks.

That weight gain sounds alarming. I've put on about 10lb after 2 1/2 years of tamoxifen so could do without more. Have you noticed any other SEs?

lookingforbaubles · 21/03/2017 21:20

i had a bone scan after starting Letrozole - i had to chase it up as my paper work kept getting lost but eventually had one

i was told i would have another one in a years time - its been 18 mths now so i guess i better start chasing again!

freddiemercury · 22/03/2017 08:40

Hi lacies..may i join you. Diagnosed with breast cancer last month....WLE done, nodes seemingly clear but more exams to be done. I've been lurking.and you are all awesome.
Er I'm also a journalist (sorry!!) and I've interviewed quite a few oncologists for articles. Am I allowed to post a suggestion of an amazing professor for Chewing and possibly Leslie?? Tho you may well have heard of him/been in contact already....and I'm just being an interfering nuisance....xxx

WhatWouldLeslieKnopeDo · 22/03/2017 10:17

Good morning Lacies

Welcome freddie. Fingers crossed for your other tests. Please do post. We can always ignore it Grin

looking it's a pain having to chase up. I hope you get a date soon. How are you doing after your op?

bob lovely to hear from you and that you're doing OK :)

mrsrhod fingers crossed for your mammogram and blood tests. I hope the new drug doesn't have any annoying side effects Flowers

pepper Flowers I hope that FIL's funeral went well. My op is to repair complications from my first surgery. I'll have a permanent ileostomy which I've been resisting for years, but it'll be worth it not to have the pain and other issues :)

DieDeutschLehrerin wow, that's a lot to get your head around! I hope you get a definite answer and treatment plan soon. It really will help :)

There are quite a few people posting elsewhere about waiting for breast clinic appointments so just waving to any of you if you are lurking here Flowers

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