Tamoxigang cancer support thread 54: A new thread for a new year!

[WhatWouldLeslieKnopeDo]

Welcome one and all to the wonderful Tamoxigang thread! May 2016 bring us all health and happiness

If you are new here, then an extra big welcome to the club nobody wants to join. The thread is for people with any type of cancer, and also those who are waiting for results. So don't be shy. We are more than happy to hold your hand while you are waiting for a diagnosis, and we will be here to celebrate or commiserate, whatever your news

No question is too big or too small, someone will usually have an answer, or an idea of where you might find one. You can laugh, cry, shout, swear, and, of course, eat chocolate it is a bit of a safe haven from the mad world of cancer, the head-tilting and talk of bravery, and all the nonsense that comes with this diagnosis :)

So feel free to introduce yourself. And oldies, feel free to re-introduce yourself if you'd like.

We only have one rule here and that is no Googling!

Thank you everyone for your kind messages, I really do appreciate every single one.
I have been given my appointment for Thursday morning. Any tips on the testing front? I've been told I may not need a mammogram because we know where the lump is and I'm 36, but may need the needle biopsy.....how painful is this?.....so keep those fingers crossed, I really don't want to have to deal with cancer again!!

Mrsrhodgilbert I do have children, 3. My eldest is currently doing his GCSE's so the poor thing doesn't need me as a distraction🙈 I also work from home with my husband.....no distractions here because he's doing everything. My mind is clearly not on the job. Hopefully everything will be fine come Thursday afternoon X

Hi dina, I've had a few biopsies. They do give you a local anaesthetic so don't panic, I had mine done with a kind of gun thing. That sounds a lot worse than the reality. it's a bit loud and you feel pressure but it shouldn't hurt so keep calm. I'd expect a local for a needle biopsy too. I assume they will do it whilst scanning you, unfortunately it adds a week onto the process because the labs need to test it.

Some people have been told at the time of the scan that it's cancer if it's quite clear and the radiologist is the capable of conversation. Mine wasn't and sent me away for a horrible week of panic. I would be more pushy now and expect to be told, but it depends how you're feeling. But as there is a chance of being told I would recommend taking someone with you.

My dd2 was due to take her AS exams the week after my diagnosis so we kept it secret for a fortnight. Not easy but I couldn't wreck it for her. But you'll know all about protecting your family from bad news. Hopefully it will all be fine and this will be an unfortunate blip.

Dina the needle biopsy is very doable. The most painful part is when they inject the local anaesthetic just under your skin. A similar but less painful feeling to when you get an injection at the dentist. Once the local takes hold you should not feel any pain, just pressure when the samples are taken. It will be guided by ultrasound. At your age you may or may not have a mammogram. I think some centres only mammogram over 40's, and some will try and get images from younger women.

Fresta I found the axillary clearance quite arduous, and was glad to be an inpatient. Some women will need strong opiate painkillers such as oramorph which may not be given to take home as a day case. I actually didn't and managed ok on dihydrocodeine and paracetamol. But I was still glad to be in hospital and my drains filled up quite a lot in the first few days - much more so than after the mx.

Thanks everyone.

Leslie so far I have had fbc, tests for Rhumatoid arthritis, celiac(sp?), liver and kidney function, ultra sound on gallbladder and kidneys and mri on head and neck which have all been normal. I don't mind mentioning symptoms all dignity has gone out of the window at this point I had ibs type problems but with a better diet this seemed to settle and no issues for 10 yrs, then in Oct I started with bad back and sciatica which came out of nowhere and I am still suffering with along with bloating and abdominal cramps either not going to the loo at all for days at a time or having to get up in the middle of the night 4 times. I have also had a little bleeding tbh I would have put it down to the stress of my miscarrage if the ack pain hadn't landed main a and e am my dh telling them every thing but now with what's happening with dad I wish I would have dealt with it years ago I hope I just haven't left it too late. God its all me me me I am not usually like this its just been a long few months time for wine I think. We won't know exactly what dad's having done till investigations are all done

DP went for his second follow up yesterday, supposedly to find out scan results and plan what happens next, but his oncologist wasn't in so we saw the registrar (not a problem in itself) who couldn't access the scans or contact the registrar to see if he had the results somewhere. Eventually find out consultant is having a meeting NEXT Monday to discuss results with radiologist, so they have made another appointment for next week. Quite frustrating particularly as it is at least 3 hour round trip each time. he did get blood results though from that morinng and they still show the markers as normal (hopefully the reg, seemed a bit confused by the dates of the results) .

Hello. I've just had bad results from a needle biopsy last week. They have found a cluster (50mm wide) of precancerous cells and I'm soon to get an appointment for a mastectomy (one breast) and reconstruction. My head is spinning. I can't believe it. I am 41 and have no family history of any type of cancer. My kids are 5 and 3. I have a full-time stressful job and we've just had builders start on a four month renovation of our house. I have no time for this. I'm being facetious but my head is spinning with the ramifications. They were very positive about the outcome saying that it was caught early so I'll get better.

I'm mostly worrying about:

1. what to tell my kids;
2. how to stop crying on school run / at work / in the butcher's;
3. when will I get back to work. We have no sickness benefits in work and I have a huge mortgage to pay and a building project to fund (jointly with DH).

Now my computer is dying so I'll come back early. Sorry if I'm slightly incoherent but I'm very shocked and frightened.

Dinah, I had the needle biopsy. It was not sore at all. Lots of anaesthetic. The nurses were lovely and it was all fine although difficult emotionally (even though I was fully sure then that nothing was wrong and that it was just a belt and braces thing).

Lolly big hugs it is a huge shock, I was similar to you being 41 and no family history, I still can't believe it really 3 years on ! The fact they have caught it early though is really positive and we are all proof that you can come out of the other side. Ask us anything and we will try to help. The kids probably only need to know that mummy has a naughty lump which needs to come out, mine were older so I didn't use it but there is a Macmillan book called mummy's lump you might find useful.

Blame that is really frustrating :(

Love to all

Lozwil - I see in your earlier post that you were wondering whether your problems could be gyne related.

Have you had a Ca125 blood test? I think it might be worth asking for one and an ultrasound of the pelvic area. The symptoms of IBS are often confused with those for ovarian issues. If you had a cyst that was pressing on the bowel, it could cause similar problems.

I dismissed my symptoms as a touch of IBS and it turned out to be a large Borderline tumour. NB to other readers, IBS rarely turns up for the first time in post-menopausal women.

Worth a try - they seem to have investigated everything else!

Fresta, just a quick reply. I am eight days after WLE and ANC and was kept in for four nights. I found it tough enough and even now am still in a fair bit of pain. If you can push for longer I would recommend it. X

lolly I've been lurking since my diagnosis last month but had to reply, the shock can't be underestimated and it will take time to comprehend what they've told you. I spent at least the first week just randomly crying, it took all my strength to do the school run as I was convinced I'd break down in front of everyone. I told just 2 close friends from DD's class, they were brilliant and made normal/ small talk to keep me together which really helped.
Practically we took advice from the breast care nurse on what to tell our 3, so the littlest (DD,7) knows Mummy has a bad lump, the older 2 DSs (9&11) know more and have asked more questions. Things that took me by surprise were DD for example asking if she could still go to school - they really wanted to understand what would happen to their routine.
I was told I had stage 2 invasive lobular breast cancer, but subsequent MRI and then the lumpectomy last week showed it was bigger than they thought. I'm waiting on the sentinel node biopsy results and they weren't sure they had managed to get all of it out so may need more surgery, before starting radiotherapy and I guess, potentially chemo.
You say you have a huge mortgage - have you got critical illness cover? If you have it's worth a call to the insurers.
I've been signed off for 3 weeks for the lumpectomy/SNB to give you an idea of the initial surgery perhaps?

Thanks Mumto2 and pepperrabbit. Good luck with your results pepperrabbit. When will you get them?

I don't have critical illness cover but have to assume that I'll be back to work in a couple of months and that we will get by until then.

Another thing that's keeping me awake tonight is that I had terrible trouble with breastfeeding my children through the breast which now has the cancer cells (DCIS). I had persistent blockages and problems feeding from that breast and, particularly, in the site of affected duct. I am terrified this means I've had this since my son was born 5.5 years ago and that both my babies were fed milk that had mixed with cancer cells. I persisted with breastfeeding for 18 months in spite of problems feeding.

Hello lolly and so sorry for what you are going through. The good news is they are precancerous cells and cancer caught early as that makes your prognosis all the better!
I told my DC aged 10 and soon to be 8 that i have a lump( explai ed it was removed when i had the lumpectomy) and with the chemo and rads they knwo i am getting medicine to make sure the lumo does not come vack. We have not used the word cancer for fear of what they may hear about cancer but DS1 who is ten is now ok with defining it as cancer although he still does not know the details.
The shock and fear are horrendously real but trust me as soon as you start treatment, you will be so much more in control and composed. And you always have this place to come to ! Cme to ask for tips, to off load, to complain, to rant..we are all here to support you as we understand and are either going theough it ourselves or have been there.
I do not think you can 'catch' cancer, so please do not worry about having breastfed your baby any of it. Your baby got your milk and you actually gave him something to protect him!
My advice: take things slowly( i know easier said than done) start now with the surgery( ?) then put that behind you and start with your treatment. It is doable but nobody is saying it is easy which is why having support is so good.

Pepper. Welcome. Sounds like your plan is almost set. Let us hope the sentinel nodes biopsy is negative but even if it is not, your docyor will explain everything needed at that stage.
Have a good day ahead all.

Thanks for the advice Happy. The surgeon was wrong when he said it could be a day case. He also told me surgery might be 31st of March which is only 13 days after my last chemo, which was also wrong. I have since spoken to the nurse who said the policy is to wait at least 3 weeks since last chemo before surgery and that the stay will be longer depending on my recovery. The nurses are definitely running the show, this surgeon just seems to be wheeled in for the operations and wheeled out again, he is quite old and looks ready to retire, I'm feeling slightly worried but by all accounts he's a great surgeon .

Welcome Pepper and Lolly, I don't have anything to add to Royals good advice, but keep chatting and asking for advice here as it can really help you through those stressful first weeks.

Hope everyone's is ok today. I am finally getting somewhere with my GP spoke to another one and she was suprise that I had not had any gyne investigations done as all my health issues started after a mmc so I am now having ca 125 blood tests and a calcium test (in case it's kidney stones). A pelvic exam and ultra sound, even if it shows nothing ruling stuff out is a step in the right direction and I do want to ttc if I am ok so it will also be reassuring if nothing shows. Thanks thyme out I don't think I would have had the bottle to ask for these things if it wasn't for your post, I am rubbish when it comes to my health and asking gp's for stuff but I am beginning to realise you have to ask I a certain way x

Lolly, mine was diagnosed when my daughter was 11 months and she had always been fussy feeding on the "bad" side but nothing was ever said about it being harmful to her but I totally get your feeling about her drinking cancerous milk!!

Re work, I felt like you did, I just DIDN'T HAVE TIME FOR THIS and I worked throughout chemo (just taking the day of chemo off), was back 3 weeks after double mastectomy and worked every day during Rads so it totally is do-able to have a whole life AROUND treatment.

Although, I look back now, (nearly 2 years later) and wonder how the hell I did it.

Chin up that it was found early and that is a great point.

Hi lolly
Just popping on to say that I had what you've got - widespread dcis. It was sorted with mastectomy with immediate implant reconstruction. No evidence of invasive cancer in the lymph nodes or the breast tissue. No chemo or radiotherapy
It's a massive shock but the surgery is completely doable and I really like my new boobs.
I also breastfed. As far as I know there is no evidence of any issues for children who were fed from a breast subsequently found to have cancer. That didn't even occur to me as a possible issue tbh. Maybe check with your breast care nurse for some further reassurance?

Good morning all.
This : t.co/9ciaCFM9fs

Hello marshy may I ask why a mastectomy if as in Lolly's case it is precancerous or if the cancer has not spread? I am intrigued.

Hi Royal, I saw that story yesterday, it sounds incredible doesn't it? In fact there have been a few sensible items in the news this week, I think there's a conference on somewhere. I'm not sure about this but I think dcis is not easy to get out in a neat lump hence the mastectomy.

How are the rads going?

Hi marshy, are you keeping well, lovely to see you?

Hello to everyone new, sorry you have found yourselves here but it's a great place to find information and support from those who've done it and want to help.

Hello mrs. Yes seems every ither day there is some new study with promising outcomes. It is still early days but let us hope there will come that day when cancer is no longer such a scary disease.
The rads are going smoothly, thank you for asking. My breast is getting somewhat darker. I have been told the skin issues usually start around the 10th session which is coming up. Let us see!
Wishing everybody a good day ahead.

Thanks for your replies and good wishes to my sister , I will tell her to join you all too,
when I was in the Uk I went along to the oncologist initial appointment and the breast clinic with my sister , I think its a gruelling experience everyone was great very professional especially the breast care nurse but it just felt like worse news each time and I feel for everyone going through it

Afternoon all, I hope everyone is enjoying some sunshine
I wondered about the mastectomy for pre-cancerous cells too royalmama I'm increasingly realising that there are so many variants of each type of cancer it's almost too broad just to say "breast cancer". It's also depressing just how many people seem to have it.
In fact someone told me yesterday - a good friend who I think means well, said that having cancer is "just a rite of passage these days" I just blinked at him.
A quick question for everyone ahead of me - I had my WLE & SNB 10 days ago now, firstly I still have a hefty layer of steri strips on the wound (which I have no intention of fiddling with), but I had a really nasty reaction to the dressing around the drain. Nasty red wheals, lumpy and peeling on top and very sore and itchy. The breast care nurse has now suggested E45 and piriton (which I'm taking obviously) after first suggesting I use nothing more than water, it's getting a little better but I'm worried that next time it might be worst or the rads will really upset my skin. I've had the odd allergic reaction before but nothing like this ever? Is this normal, a sudden sensitivity and did it extend to ordinary plasters after blood tests & canulas?

pepperrabbit, I had a similar reaction, blisters and the lot. I made it a point afterwards to mention this ( with the chemo etc) and the nurses did take it seriosuly. Mention this before your surgery as they do have various types of dressings which may work better for you. I think it is a sort of allergic reaction and is well worth mentioning and getting them to seek alternatives. As for the rads which I am currently undergoing, skin reaction is the main side effect. I am on my ninth session and my breast is slightly darkened but still no other reaction. I have been told how to take care and all. Once you are there we can share tips. Take care.

Hi Royal
Re dcis, it stands for ductal carcinoma in situ ie it's in the ducts of the breast and is still in situ ie hasn't spread into the breast or, as my BCN used to say, it hasn't yet developed the ability to become invasive. It has the potential to be invasive, especially if high grade I believe (as mine was). Treatment is surgical removal and as mine covered a large area (more than 7cm across) it had to be a mx. I think for smaller areas sometimes partial mx can be done. I was unfortunate enough to get it in my remaining breast a year later and had a 2nd mx then. I believe that is quite uncommon. Immediate recon can often be available for dcis but obvs it's a very individual choice for each woman as to whether to go for that. I woke up from both mx ops with a new breast shape in place which suited me fine. Ive got used to my new breasts now but I still miss my nipples - the sensation more than the appearance.

Hi Mrs! I'm OK thanks. Just helping ds to finalise his uni place for September following his gap year so all good fun. Have started salsa lessons and learning Spanish following our hols to Cuba. Enjoying that. Oh.....and awaiting results from overdue smear test....but we won't think about that....
Waving to all