**Tamoxigang Thread 52** With virtual tea, cakes and chat for all with cancer concerns

[Lilymaid]

We were almost at our 1000 post limit for Thread 51 - hope the title is OK but wanted people to know that we aren't just about people on Tamoxifen but for all with cancer concerns!

Blimey Boobz I thought my firm was generous with me (and still is) through my treatment but that is extraordinary. Let's hope, though, that you don't need to take up the magnificent offer.

Wow boobz, just wow! That's an amazing offer. Really makes my company (Ftse 100 no less) look absolutely appalling in how they treated me to start with (it's ok now). It just shows there is still lots of goodness in the world.

So sorry you still don't know what you're dealing with. That must be hard.

Lily, glad to hear you don't need a transfusion, that's one hurdle down.

Bash, great news for you too, long may the treatment keep working

Now I know rads aren't supposed to have any effect for a couple of weeks (according to the lady this morning) but my breast/nipple is stinging away after just the one session :-(. I've also been told my boosters will end up going right across the nipple so I dread to think what state I'll be in by the end. Please reassure me that it will all be ok!

Wow boobz what an offer ! Hope you don't need it though. They must think very highly of you

Lily fingers crossed for the scan results

Bish glad you got good news from your scan

Minty I didn't get any side effects from rads for a while. Speak to the rads people about it, I found them really helpful with advice and tips. I did get sore and peeling and it does continue for a couple of weeks after you finish but then it heals quickly.I had boosts too and treatment to the clavicle area

I know - totally crazy. I think there are just some amazing people in the world, and he is one of them (and happens to be very high up so just makes stuff happen). I am so lucky (but I guess a bit unlucky to be in this situation in the first place!)

We had such a strange week in the UK last week. DH and I very rarely get to see our friends together on trips back home like that as usually one of us has to stay behind for the kids, so was lovely to see everyone as a couple sans children for a change! But with a somber undertone I guess. We got drunk several evenings with friends we hadn't seen for years in some cases - obviously lovely to do but felt a bit rubbish every morning! And then the surgery to remove the lump, and the blank looks on the consultants' faces... all so surreal.

It's DH's birthday tomorrow and we spent loads in Selfridges on him which he has already worn and now won't have anything to open tomorrow! Argh.

A terrific offer boobz!

Wow Boobz, that is a fab offer.

I had a week at the Mayo clinic when I was first diagnosed. They were awesome in that when I had a scan they gave me results an hour later rather than after three weeks when I ring up for the fifteenth time which is my NHS experience. I had PET, MRI and genetic screening all in one day. It cost £8k and Minnesota is not as fun as New York but I would certainly recommend it if you have the funds.

We paid for a queue jumping concierge guy who zoomed us about the place barging in front of other people who had to wait. It was a bit odd and Disney.

That's an incredible offer boobz. How are you feeling about it all today? Could it work for you all? I didn't realise you had been given a possible diagnosis, there are people here with triple negative I think and a lot of research is going on right now into it. It's very difficult to come to terms with being very ill when you actually feel fine.

Minty, hope the rads are ok today. Have you been told not to use soap? I was given a tube of aqueous cream to wash with and moisturise well.

Lily, pleased to hear your scan news.

Thanks for the reassurance malt. There's a part of me that thinks that as I got away with chemo relatively lightly - what am I saying? they cut it short two cycles early because of SE and I'm left with numb/swollen fingers and the menopause from hell! What I mean is I didn't have hospital admissions, blood transfusions or injections - so I wonder if I'll suffer more from rads. Not that there is a scale of suffering and that we all have to endure the same.

Mrs, they advised me to wash with warm water and un-perfumed soap. I can use a roll on deodorant on the top half of my armpit as I'm not having rads to my lymph nodes. The biggest nuisance is having to hold my breath during treatment to protect my heart.

I think everything has finally caught up with me. I walked DD to school today. I had no acceleration to catch up with friends, my legs ached so much on the way back as if I'd just walked a marathon and When I got home I had to sit down and rest for 15 mins or so as I was absolutely exhausted. I'm loving the sunshine but have no energy to get out in it.

On a happier note, I had my hair trimmed today :). I was completely bald at Christmas but now have an ultra short pixie cut so it's all heading in the right direction.

Right off now for my next rads. Hope everyone is enjoying the sunshine

Amazing trice - did your company pay for it or did you just decide to get results quicker by travelling to the US?

Mrs - they have said what they think it is, but not been able to confirm one way or another, hence the sentinel node being postponed until they know.

It could work if it had to... if it has spread or not easily treatable, then I think we just need to go and get it done. Whatever that is.

Hope rads isn't too bad today minty.

boobz what an amazing offer, doesn't mean that they think you are dying but that you are somebody worth investing in. I know you are not in a position to accept at the moment as the results are still not conclusive but I would think that being able to be with your family during treatment will aid your well being immensely and that will aid your recovery. Awful for you still not knowing, you will hear on here, repeatedly, that this is the hardest part and it is being so drawn out for you. As mrs says, if it is that particular type of BC, there are lots on here that are/have been treated successfully for the same. Hang on in there.
minty I think a sore nipple after one session doesn't sound usual - I would make sure they are aware. I was one of the people who used MooGoo udder cream, no idea if it made a difference but I didn't suffer too badly at all. You do carry on cooking for a couple of weeks afterwards and I now have a very 'tanned' boob.
How are you wallaby feeling at all better yet?
lily glad to hear your results were better than anticipated.
gilly not long until your last chemo - woohoo!
I have just got back from meeting with my mum's consultant - they have been unable to clear up the infection from her hip op, she is back in hospital after 36 hours of freedom at home before Easter- and are having to remove it completely. This means a lack of mobility and a hospital stay of many weeks. It's all a bit depressing. I have to keep reminding myself that at least I still have them both.

Hello. Am looking for info/support. My BF has been recently diagnosed with triple negative BC that has spread to her lymph, liver and lung. She's having chemo at the moment. Just wondering if anyone else has any experience of this? We are all so shocked. She's 35. It's awful

Hi Elvis - sorry to hear about your BF. I also have secondary breast cancer, though not (scan willing) beyond bones. The good news is that there are lots of possible treatments. The bad news is that secondary cancer is still incurable, but can be treated as a chronic illness and kept under control. The Breast Cancer Care website has a specific forum for people with secondary breast cancer which might help when we can't, but you are very welcome.

Thank u for your reply and sorry to hear you're going thru it too. Stupid question but why is it incurable? If chemo is a poison, why will the cancer come back??

Boobz- an amazing offer. My main lump was triple negative which did mean that it soaked up the chemo well and after my op they couldn't find any evidence of it left. Don't google it as the info is out of date and they have done so much more research into it and are treating it more effectively. The lovely Amber reassured me on that.

Elvis- sorry that your BF has been diagnosed. I don't know much about secondary breast cancer but there are others that will have good advice.

Zombie waves at the Tamoxigang.

elvislives2012, once cancer has spread beyond it's primary site and immediately adjacent lymph nodes it is loose in the body. They can deal with identifiable secondary lesions but there will always be other cancer cells circulating looking for somewhere to take up home.

I've been on the cancer journey for 3 1/2 years now. I've had 2 mastectomies, 1 round of radiotherapy, 2 rounds of first line chemo and am now on a second line treatment with Kadcyla. The only place they've found metastases are in my liver. They will be operating at the end of May to remove the affected areas of my liver.

Dang, wrote a long post and battery went on my iPad. So in precis!

Good luck for results on Friday lily
Great offer boobz

I am hugely thankful for having the NHS for my treatment.

Lily, sorry for my last post, I should have written good news about your bloods and here's hoping for good news on Friday.

Hi Zombie - I'm stalking your thread and send best wishes! Thanks for the expanation about secondary breast cancer. I always find that the word "palliative" that goes with my treatment is somewhat depressing, but I am still working, going on holiday, doing the usual things as many others with secondary diagnoses do.

So I got a call from my lovely breast cancer nurse last night (out to dinner for DH's birthday)... and she confirmed it was breast cancer, and not a hematological cancer (strange feeling to be relieved?)

This morning I emailed the pathologist asking for more details and I received the following:

"This is a triple negative grade 3 invasive ductal carcinoma with medullary features. This tumour has good features in that is has a pushing margin rather than an infiltrative one and a brisk inflammatory response."

So obviously I am playing the Dr Google game now, as I won't actually see my consultant until Monday at the earliest (am flying back to the UK on Saturday) and found this out about Medullary breast cancer:

"Medullary carcinoma cells are usually high-grade in their appearance and low-grade in their behavior. In other words, they look like aggressive, highly abnormal cancer cells, but they don’t act like them. Medullary carcinoma doesn’t grow quickly and usually doesn’t spread outside the breast to the lymph nodes. For this reason, it’s typically easier to treat than other types of breast cancer." Which seems very good to me.

And then this with regarding to the brisk inflammatory response language:

"When a tumor grows, the body’s immune defense system creates lymphocytes that infiltrate the tumor base and produce an inflammatory response to fight off the abnormal cells. This response is labeled TIL for Tumor Infiltrating Lymphocytes. This lymphocytic infiltration is measured and categorized as brisk, non-brisk, or absent. The higher the TIL response, the better the prognosis. Brisk is better than non-brisk which is better than absent. Thinner tumors usually have a higher TIL response than thicker tumors. It represents the body’s ability to fight off the tumor." So again, this is good for me as I have a brisk response.

And then finally, I believe "pushing" margin is similar to "close" margin, and this means "Cancer cells are close to the edge of the tissue, but not right at the edge. More surgery may be needed", which was better than "positive" or "infiltrative" which would have meant cancer cells were right at the edge, not close to the edge, and more surgery definitely needed.

Soooooo - although I was starting to think the world was coming to an end because I was triple negative and grade 3, I am now starting to see some light at the end of the tunnel! The pathologist also wrote "it is a small tumour which is good news".

So now I still need to know if a) the 2 tiny lumps next to the (now gone) tumour are malignant, b) it has spread to sentinel nodes (looking less likely) and c) whether I have the BRCA gene, as this type of breast cancer is linked to that gene.

Still many questions to ask the consultant, and so much to explore, but am finally feeling a bit more informed and like it's not as bad as my mind had wandered to in these past 5 weeks....

And breathe...

Diagnosis is so much better than the wait Boobz!
So where to have the treatment?
Lovely weather here in London - sitting out for lunch weather at last!

Yes lilymaid!

As long as it is not in the nodes, I think this means I will have the treatment either in the UK or Italy, rather than the US.

Amazing sun here in Rome too!

At last boobz, some actual news and it sounds better than you had dared imagine. Hopefully by Monday they will have worked out what to do with you, have they dropped any hints at all?

Boobz, I'm glad you've got some answers finally and hopefully things will not be as bad as you feared.

Elvis, sorry to hear your BF has been diagnosed. I hope that they can get the cancer under control and that she too can work, holiday and live as lily does.

Oh buns :(. Your poor family, it just seems to be one medical problem after another. I think we're a bit like that too - FIL had a quadruple heart bypass oct 2013, surgery for bowel cancer jan 2014, I get diagnosed with BC last July and then MIL breaks her hip 3 weeks ago... Fortunately, she is home nearly a week now and doing well. Try and keep looking after yourself though in amongst all the hospital visits.

So I cried at the GPs this morning. I'd taken knackered, fat, unfit, refluxy, beardy (not to mention hairy ear lobed) me to try and get something to help. GP was lovely and I have some omeprazole and sleeping pills to start taking but of course, like everyone on here she can't give me anything hormonal to help with the menopause symptoms so I guess I just have to out up with them. I hate what cancer treatment has done to me, I hate the fact that I've aged 10 years or so and have a huge job ahead of me to get back in shape.

But I know this is all trivial compared to you ladies dealing with secondaries. I have my life, I have both boobs - even if one is scarred and battered.

I'll bounce back, just feeling a bit down despite all the good weather.

Just had my third rads - buns, I agree it's too early for any kind of radiation burn. I think I'm a bit sore because I had two ops through the same incision around my nipple so it's a bit more sensitive anyway. I'm whacking on the moisturiser so will hopefully be ok in the long run

Hi.
Good (ish) news Boobz.

Sorry to hear that you are struggling with the menopause Mintyneb. :(

I am not
looking forward to early menopause either.

I got my diagnosis yesterday, as well as having ct and bone scans. I have stage 3 cancer with lymph node involvement.
Thankfully not spread anywhere else. I will be starting chemo asap. Really not looking forward to not enjoying food for a while, plus the other side effects.

I see an oncologist tomorrow, which is very quick.

Hope everyone else is ok and enjoying the sun.