**Tamoxigang 53** Roll up, roll up... Anyone with any cancer (or test-waiting) welcome!

[MarthaCostello]

Good evening all,

The old thread had nearly run out when I posted so I have taken the liberty of starting a new one before it fills up completely.

I hope the title is OK - there isn't actually that much room, I was trying to fit in that people should come along even if they haven't been diagnosed yet.

If you're new here welcome to the Tamoxigang thread. This is a great place for anyone with any type of cancer (it originally started out as those taking Tamoxifen for breast cancer, hence the name, but has expanded). Please introduce yourself and make yourself comfortable! You're more than welcome here if you haven't been diagnosed yet too, sometimes people find it helpful to talk through their fears whilst waiting for results. And we will hold your hand until you find out, and hopefully wave you on your way with an all-clear :)

There is almost always someone around to chat, or to answer any questions. Nothing is off-limits here. This is somewhere to offload any fears and frustrations, in a safe place where someone will have been there before.

I hope everyone has been enjoying the gorgeous summery weather

Hello all. I hope all you ladies are doing fine. I have had the drain taken off today and what a difference it has made despite the fact I am still stiff and sore from the surgery! I even managed to do a bit of shopping afterwards. I have been doing the standard stretching exercises everyday since i had the operation. Has anyone got any tips or don't dos regarding these exercisesthat you would like to share? Also, how soon did those of you who had breast conservation surgery go to rads?

Royal - good news. I hope,you treated yourself to something nice whilst out shopping.

I got my letter from the hospital confirming that the hysteroscopy results shows its not cancer. Still can't believe it. However, they have found abnormal cells... . What the heck does that mean? I'll find out more at my appointment next week. You think you can re-enter normal life and something else happens. I also have my mammogram next week, so I'm in and out of hospital all week.

Lily, I found that for me the letrazole bone aches got less over time. It took about three months before i could walk without looking like an old lady. Different brands also seemed to give more or less side effects, although they always say that they are identical.

I have scan results on Wednesday and I have just unwisely watched a documentary on the iplayer about someone with advanced breast cancer which has left me spooked.

Hi royal, good news about the drains coming out and that you're feeling more comfortable. Any luck finding a suitable bra?

There's not much I can say about the exercises other than make sure you do them or you could find you have less movement in your arm, they get easier.

I had my surgery on 21 May last year and I had rads over the first three weeks of July. I went on our pre booked family holiday one week late and I was fine.

River two steps forward, one step back again, I'm sorry you're still waiting for answers. Next week sounds stressful too. This cancer business certainly messes with your head. Hope you get a proper all clear very soon.

Rivercam thanks. Your test results sound like some riddle, but hey at least they ruled out cancer!
mrshodgiibert you bet I did:) i went staright for the bras and got me sone really comfy and supportive cotton ones. Gosh it does make a difference. I also got myself a nice summery scent while at it:)
The exrecises are actukly doing me a while lot of good and I find once I start any stiffness just disappears, so I shall be sticking religiously to them.
I emailed my boss saying I probably won't be able to teach the first term( i teach part time at uni) he was very understanding. I do hope to be able to resume teaching in the spring term around February. I wxpect by then to have started all treatments and rads etc and will be able to asess my general abulity to work and how much. Luckily I can choose how many hours to teach, so that will help. DH not keen on me not working this term, says I may be able to but I do not wNt to take the risk, sonce .i don't know how iI will react to the rads and any other treatment. Also, the radiation therapy plce is a good 40 mins drive from where I live. It just doesn't seem feasible. I am thinking of maybe joining a fitness club for some light exercises if I do find I am anle to and have much time on my hands. Will see how it goes.

Royal, sorry I can't remember all your details, are you having chemo too or 'just' rads? Your timing is similar to mine last summer, a little behind. I felt pretty fit after rads although unusually I got a lot of pain from it.

Emotionally I was less well I suppose, after the whirlwind of treatment your emotions do catch up with you. Although I wasn't falling to pieces all the time I was thinking about what and happened to me all day, every day for a good few more months.

I suppose what I'm saying is that if you have the option of taking a bit of time out you'd probably benefit from it.

I still feel stiff in my under arm area every morning when I get up and have to do some stretches to get moving, apart from that I'm well. Glad you've found some good bras!

Morning all,
Well I've had my last counselling session this morning. Feeling so much better than when I started and it feels like a landmark to have finished.
I've taken a couple of days off work yesterday and today so just chilling with the dc. Off to have my hair done in a bit. It's lovely to have a bit of time to myself and the prospect of no more appointments now until November is a good one.

River what a pain about that result but a lot less worrying than it might have been. I wonder what they will propose?

Hope everyone is enjoying the glorious summer weather - it's chucking it down here!

mrsrhodgiibert, I was diagnosed on the 28th of June. So far I have only had surgery and ALND. My onco wants to see me next week to review the Lymph node biopsy results with me as well as the hormone receptor results in order to set my treatment plan. I am hoping and praying that I do not need chemo, but depends I am guessing on what all the combined results show. I do know for a fact I will require rads, but not sure how many sessions yet. The cancer has not spread to any vital organs and the tumour was around 2 cm, so I am hoping I am fortunate when it comes to any possible recurrence.
When you mention the emotional side, I can relate. I struggled a lot at first when first diagnosed, but no sooner did the surgery happen did I start to feel less emotional and more practical( almost like I achieved something?!) . However, I am expecting this lull will not last and that the treatment will be a challenge seeing as I have no idea what the side effects will be like for me. My DC are under ten and, being boys, are very demanding, but they keep me busy, which I guess is a good thing when you have so much to worry about eh?

Hi marshy, I'm pleased to hear your counselling has been worthwhile and I hope you continue to feel better about it all. It is lovely to get out of the appt/ hospital routine. I've had almost 3 months free now and it's lovely, I have an appt with my bcn in sept but I'm not sure what its for.

Royal, I haven't heard of ALND, just had to look it up. I'm not sure how it differs from SNB which I had. Number of nodes removed maybe? Fingers crossed for all yours being clear. I think where you are now is a scary time, waiting for that final bit of vital information. I was a jibbering wreck when I had that appt, fortunately I got good news, there were tears. I hope your boys manage to distract you over the next few days, but look after yourself.

Afternoon lovely ladies.

I've been debating posting for a few days. My mum has just been diagnosed with invasive lobular carcinoma. She is 59 and otherwise well. It was spotted on a routine mammogram and she was recalled. I'm struggling with so much going on in my head. Firstly I have a tiny family; just her and my grandma around (her mum) who is in her 80's and frail. This diagnosis has really knocked her. We are all scattered geographically and no one is close, this worries me too. Then there is her lack of desire to find anything out. I know that's her right but she literally is asking nothing, and I have so many questions. I thoughts perhaps if I spout out some if of what is churning around maybe someone could help or reassure?

She won't ask the grade of the cancer and says she hasn't been told. Do you only get told if you specifically ask?

She's been told it is 'small' - a patch about 18mm. She has had her armpits scanned and was told there 'is nothing there' - does that mean or sound like it means it hasn't spread to the lymph nodes? She didn't ask why she was being scanned and didn't pursue it.

She's been told to have an MRI on Sunday, because this type of cancer can 'pop up' in other areas of the breasts and they want to thoroughly check. However she has already told her "man" (she has no clue whether he is a Dr, oncologist, etc) that she wants a double mastectomy immediately with no reconstruction because she 'can't be bothered' and just wants her boobs off right now. He says 80% of women with this type of cancer and in her age group decide to have a mastectomy to minimise future risk but some other thing (very complicated name, conservation type surgery which I take to be more like a lumpectomy) is an option. Even if her other breast is healthy on the MRI she says she can't cope with the stress and just wants it gone. I think this is a massive deal and that she needs to think it through. She is a busty D cup but only a size 10 and I really think she's going to find it hard after the event to come to terms with it.

Which leads me to ask, in the case of a double mx what is the recovery time like? What milestones are to be expected in terms of recovery? Driving? Cooking for herself? Going back to work? I know everyone is unique, but I have seriously no clue at all.

And lastly (for now) I ponder about 'me'. There is no history of bc in our family, or of cancer at all. This is the first case in all the generations and sidelines we know. Do I need to worry? Is my chance increased? I have huge boobs - GG cup, and although I check I can never feel anything. Now my mum has it, should I be more worried? Can you just demand mammograms these days? I'm 41. The more I think about boobs the more I worry myself, I keep getting a feeling like the BF let down reflex feeling when I think about it all....is that weird?

I feel like my world has cranked about 10 degrees off it's axis and everything is the same and yet not the same too, it's the weirdest feeling ever

Hi alabaster,
I just saw your post and didn't want to read and run, so a quick response from me. I'm sure you'll get lots more great advice too.

Just to say that the macmillan and breast cancer care websites will give you helpline numbers which are answered by specialist nurses. I'm pretty sure this service is open to family/carers so might be a good source of info and support for you. Whilst you're on the Internet please resist the temptation to Google. You will scare yourself senseless with out of date info most of which doesn't apply to your mum anyway. If you need to read stuff stick to the reputable sites such as mentioned above.

Re your mum not asking questions, getting a diagnosis can be overwhelming. You have to take in info and consider treatment options whilst reeling from being told you have cancer and needing to suddenly become an expert in it all. It's exhausting and scary and there really is only so much you can take in. It might be worth checking with your mum whether she has been given the number of the breast care nurse on the team so that there is someone to call on when she's ready to ask and to talk over her surgery options.

Recovery from surgery depends on what she has done but isn't as onerous as you might think. I've had 2 mastectomies with implant recon and most of the restrictions were about not lifting my arms over my head or overdoing it until the implants were properly settled in place. Not everyone decides to have recon, it's a very individual decision. Some women prefer to use prosthetics or to be flat. It is possible, or even preferable sometimes, to have recon at a later date so it doesn't have to be a once and for all decision now.

Re the genetic factor, you can have testing to see whether the cancer has a genetic element but I believe that will be offered only if the family history indicates it might be a possibility. I'm no expert in this area however others on the thread have been through this and may be along to share their experience. I was told my daughter is at no increased risk.

Hope that's helpful. Keep posting if you need to, and all good wishes to your mum.

Thank you marshy

Oh and re the lymph nodes, being told there was nothing seen there on scan is a good thing as it means it hasn't spread outside the breast. Scans are usually followed up with a lymph node biopsy to confirm. It's a surgical procedure usually done as a day case or sometimes at the same time as other surgery such as mastectomy. Hope that's not confusing!

She's just called me now saying she's had a letter from the 'man' to her GP which states the type of cancer, again no grade, but says in the letter 'there appears from a localised scan to be no spread to the lymphatic system'....

Fingers crossed.

Hi Alabaster, I am so sorry about your mother. I have just started my journey havung been diagnosed just last month, so I can not be of much use to you, however, it sounds like your mother's cancer is very treatable and all I can say is once you strat the treatment thungs di change in terms of how you feel. I suggest you note things down and if possible go with her for her next visit. Ask as much as you like and research whatever you are told on the net. Your life may never be the same again, but it needn't be awful. I suggest you also speak to your own GP about your concerns. Nobody in my family ever had cancer, so I am pretty much the first too.
Some of the kadies on this forum can asvise you more having been on a longer journey so far. i wish you and your mother all the best.
mrsrhodgii i am sorry i did not explain what the acronym stands for. Ys it is more intense than sentinel node biopsy as it involves the axillary nodes and hence the rusks of lymphedema too are much higher( another one of my major concerns). Thanjs dor your wishes regatding the results. I so hope the news is good and that i am spared more distress.

Always good to have it confirmed in writing alabaster although there are many on this thread who have had positive nodes and still very much here and getting on with their lives so don't despair, whatever the outcome.

Just read your thread alabaster. I'm sorry to hear about your mum and would just like to echo the utter shock at having this diagnosis. I think it's very natural to hide from too many facts. When I first started looking at the safe cancer charity websites I would literally hold my and across my iPad and move it down the screen slowly. If I started to read something scary I wouldn't go any further, particularly about stages and grades. It's just too frightening.

Having said that, I don't think they will be able to grade/stage her until after surgery, they need the removed tissue to test so don't fret about that yet. When I went for my post op appt I was told the grade and stage and that it was hormone positive. I didn't ask, I was just told. I was given a slim booklet with all the details written down to take away. Over a year later I still haven't looked at it, I asked DH to put it away somewhere. I know enough for now, I remember that my odds are good and I don't want the stress of knowing something that might cause me any more stress.

I can really imagine how terrified your mum must be and if she is alone that's a whole lot worse. Does she have anyone who can go to appts with her?

Thank you all. She has a partner and he has said he will be with her, he's handled things pretty well. I'd be panicking without him there.

Picture eddy from ab-fab and you'd be there. In her serious (rare) moments she'll just say she's scared. Then she'll say 'I don't care what they do, as long as they can get rid of IT'... Then her usual personality comes back and she says 'oh daaaaarling, it's just useless tits, just chop the buggers off and we can all get on again. G&t anyone??' That's just what she's like. Hug her and she'd cringe. Try to ask about it and she changes the subject. She tells me not to ask and not to query it. She's a solitary creature but I can see the chinks in the armour.

She's under the impression that 'chopping them off' is so straightforward, and she's eradicating all risk. They've not mentioned chemo or drugs afterwards, and I'm scared of suggesting just 'chopping them off' is a simplified view. According to her, 'boobs are soooooo yesterday' anyway. She's always like 'the androgynous look' apparantley. I kid you not. Head. Sand. You get the drift......

Hi Alabaster, sad to learn that your Mum has the diagnosis. I agree with the others - from what we know so far, her odds are excellent and she is likely to live as long as anyone else.
If it is small cancer that hasn't spread, mastectomy doesn't give any better chance of a long life, at all. Though it's a personal choice by people of course. Definitely needs to talk it through with her team, if she can.
Not had a mastectomy - I was lumpectomy - so can't say much from personal experience, but it's certainly not a straightforward thing for everyone. And there would still have to be cancer treatment of some kind.

Hi all. I think we're all pretty much done with intros now but I have real FOMO so will do one anyway!

Diagnosed with grade 3, triple negative, DCIS multi focal breast cancer (3 small tumours all in my left breast) and am half way through 6 months of chemotherapy. my treatment sounds very similar to Cailindeas35 but switched around, so I have already had 4 x EC and have just started on 12 x weekly Tax and Carboplatin. I will have a double MX in November and probably immediate recon with implants. I am being tested for the BRCA gene mutations as my aunt died from BC at 41. I have 3 DC all under 6 and a lovely DH who is being super supportive, and I live in Rome and am flying backwards and forward for treatment (which is a real bugger now as it will be weekly flights until mid October!)

This thread has been amazing for me so far since being diagnosed in March - I keep trying to meet up with you all but we don't quite make it happen do we?!

Have just got back from a week in France with friends - am so relaxed. New chemo is not being as kind as original lot but am still doing ok and managing to exercise and work full time which are important to me.

More later when kids in bed.

Oh and I have been cold capping and I haven't lost any hair yet!

Hi all, I hope you don't mind me crashing in to ask some questions. You all sound very clued up (sadly) and I am trying to resist the lure of Google.
I've been referred to the breast clinic, have seen the consultant but haven't had any mammogram or ultrasound yet.
I've had one slightly swollen arm pit for a few years but I believed that to be down to breast tissue changes during bf as if I used to get a golf ball sized lump under there that came and went as I fed.
About 6 weeks ago it got a lot more swollen and painful so I saw GP who tried some antibiotics. It's no longer painful but still swollen.
The consultant checked yesterday and the breast on that side is lumpy.
I feel incredibly tired but I think that's probably stress. I am waiting for calls to book the tests. I'm mid 40s with dc of 4 and 8. No family nearby and I suffer from anxiety anyway which is obviously starting to go off the scale.
Not sure what I'm after. Reassurance, a good talking to or just some advice on what happens next.
TIA

Hi Giddy, welcome, but hopefully it will be a brief visit to this thread for you and the odds are that you'll be fine. I don't recognise what you have described as anything I've heard of on this thread so I'm a bit stumped I'm afraid. Someone else may have a better idea.

In terms of what should happen, it looks like you're already going a bit off plan. The usual scenario is the gp sends you off to the breast clinic where you see a consultant for a physical examination, which you've had, then you are usually sent straight for an ultrasound scan and/or a mammogram. In your case you're having to go back another day for those tests, that's not usual but not unheard of. It just spreads it out time wise and adds to the anxiety.

If the tests are inconclusive they may take a biopsy to examine the tissue. If that happens you should leave the clinic with an appt to return the following week for the results. If you get that far it's advisable to take someone with you, although that doesnt mean that everyone who needs a biopsy has cancer. They just have to be sure, do you have someone to take? If everything looks ok they should tell you the same day.

It's a really anxious time and we've all been there, some here are still waiting for full results to come through. There's little you can do to reduce the anxiety, but know its perfectly normal. Fingers crossed that its not what you're worrying about, but there is plenty if help and support here if you do need it. Actually knowing is a whole lot better than wondering as there are so many things that can be done. Ask anything.

Hi all, unfortunately my lymph nodes tested positive. I got the call and am going in tomorrow for the details and to discuss treatment which I have been told ( after i persisted in asking) will include chemo. I have been trying since my surgery to push thoughts of chemo far far away, but it is now obvious I have nowhwre to hide. The information on chemo has just made me so dizzy. DH wants me to seek a sevond opinion to make sure I get the right treatment. I feel like I have been hit by a lorry to be honest. I had still some hope of the treatment being less austere. How will my bid cope with chemo, hormonal treatmen and rads!!?? I know many of you have been doing this for some tme and I probably sound peevish :(
I am just so upset. I want to be able to do things with m kids and not be knackered and sick all the time.
Sorry for the rant...

Thanks MrsRhod and may I congratulate you on your choice of DH It was only a consultant appt because it was a Saturday. Hence having to wait to be called back for tests. I'm going to have to do most of it alone as DH will have to look after the DC. I might be able to source help for results but summer holidays are a bit tricky. One has ASD so holiday clubs are a no no. We'll cope!
As you say it's not knowing. The only person I know who's had it is my xsil and she isn't fond of me at all! And actually royal she had it badly. She had a double mastectomy, chemo, radiotherapy and reconstruction. She had her ovaries removed too and AFAIK is OK over a decade on. It wasn't easy but it worked.