All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

Hi Jean. I've seen you about on the boards and am sorry you're going through this worry. I think it's normal to be stressing about every ache and pain - I certainly did and still am.
At my referral appointment I first saw the consultant who asked a few questions and examined me. He also placed a needle in the lump to see if any liquid came out which would indicate it was a cyst. I then had mammograms and ultrasound then went back to see the consultant. It was fairly quick - no more than a couple of hours. You should be told there and then whether there are concerns and if any further tests are needed. In my case I had core biopsies.
Fingers crossed that everything goes well for you.

Hi Nipersvest. Following my biopsy I was told to remove the dressing within 48 hours and the steri strips just came off gradually over a few days.

Hi nipers and welcome. I'd leave them for at least a few days. Better to leave them on too long than take them off and have it open up, I would have thought. Sorry you've had to join our little gang. In the nicest possible way, I hope you won't be here long :)

Good morning all. leslie, I hope your chemo goes as well as possible. You are such a lovely and staunch supporter of all here and deserve nothing but the best of vibes sent your way.
Sleepy, my ER was only 15% positive. I read a lot about this and some studies consider anything lower than 10% to be more of a negative but none of the research i saw advised against hormone therapy and advised further investigations. I was told that the higher the ER receptor result the more beneficial Tamoxifen would be, but also that being posiitve in any way still means blocking the estrogen could help. So yes it can be confusing! It sometimes seemed to me they do not really have a clue about this! Maybe when you see your oncologist ask for the pros and cons and the basis for her/ his argument or position etc. always debate them and ask for the latest info available to them. Best of luck
Somebody asked me about the joint pain( sorry i can not recall who as i have been on and off) well in my case it is mostly in the morning or after sitting for a while that I feel stiff in my lower limb joints. I have noticed that being mobile helps a lot.
Welcome to all who have joined and i truly hope you get the reassurance that will ease the anxiety.
Have a good day ahead all.

Hi Royal, I notice I'm getting some stiffness in my hips Knees and ankles too after sitting and I haven't started tamoxifen yet. I put it down to chemo side effects. I'm taking a codliver oil and glucosamine supplement to try to help.

It might have been me asking about stiffness. I do feel less supple, don't bend as easily and if I've been on the sofa for a while I hobble across the room until I unfold properly. Yet I've just been to the gym and run for 30 minutes on the treadmill, amongst other things with no problems. I try to walk everyday, but if I walk a lot such as around a city for a whole day I certainly suffer afterwards. I'm undecided about whether it's the tamoxifen or being 52. Same with the weight gain, about 7lb in two years.

I've received an appt letter to see a gynaecologist next Tuesday for the results of my hysteroscopy. Apparently my results were not available for the MTD meeting last Friday so I don't have any clues about what he's going to say. DH is going to be in America again so I hope it's nothing too scary.

Mrs good luck for your appointment on Tuesday. The problem with having previous cancer is that everything else becomes so much more scary.

I saw a radiation oncologist in clinic today. She said the normal plan for my cancer would be for three weeks of rads, but because of my connective tissue disorder I have poor wound healing so she wants to do 4.5 weeks of a lower dose treatment instead. I will also need a pacemaker check every day, so I think I will be at the hospital for a few hours. The planning appointment will be in the next few weeks, with treatment starting in mid July. She was in favour of me starting hormonal therapy after my rads. She said that 3/8 translates to about 10% of cells being ER positive, but that tamoxifen treatment may prevent new cancer from forming in my other breast as well as treating the existing cancer, so similar to what Royal has said.

Fresta I hope the sleeve does the trick for the lymphodema. I'm glad it doesn't look as bad as you feared it would.
Chewing I hope your biopsy today goes ok and you don't go all wobbly.
Nipers I had a post op appointment a week after my surgery and they removed the steri-strips then. Do you have a number of a nurse to call to ask for advice?
Jean I hope this week doesn't go too slowly for you. Most people get some indication at the breast clinic if there is a problem suspected, although quite often you have to wait a week for biopsy results to find out provisional treatment plans. This is usually because biopsy results take a few days to come back and then are discussed at a MDT before you are seen. The vast majority of people are discharged on the day at the breast clinic because most lumps are benign.

thank you for the welcomes and advice, and yes WhatWouldLeslieKnopeDo, in the nicest possible way, i also hope i won't be here long, but its good to know that if the results are not what we're hoping for, there is a place to go for a chat

we will know more on monday after getting the mri scan results. i was told yesterday the lump is synovial, some sort of synovial tissue mass, most of which turn out to be benign, but what they need to rule out is synovial saroma, which is cancer.

i've searched the mn boards for posts containing the word sarcoma, and there was a poster on these threads a couple of years ago with sarcoma called goodnessknows, is she still around?

Hello all.
silly I am still waiting to hear about my biopsy appointment so this is being chased up now.
mrsrhod Hope your meeting next Tuesday goes ok. I must admit I am worried about putting weight on whilst having treatment. I have just lost 3.5 stone and am the fittest and healthiest I've been for a long time so will be upset if I pile it back on again

Good job I chased the biopsy. It's tomorrow morning apparently

Hi all - been lurking for a few days. Went to have my skin mark ready for surgery this afternoon and it all went very badly as I knew it would they have found another suspicious are next to the original 'nodule' that didn't look good to me on the ultrasound - you know things are worrisome when the senior radiographer comes in to check too! Anyway after about half an hour of me hyperventilating and crying and asking 'what can you see' they have said it could be a haematoma but the nodule has changed and the area next to it looks worrisome. I now have to meet with my consultant at 8:15am to discuss this and they are fast tracking an MRI. Surgery will not be happening tomorrow. Had the feeling they wanted to tell me more but didn't want to as I was on my own. Terrified doesn't even cover it. Sorry, I am no comfort to anyone else right now - just want to know what on earth is going on. Preparing for terrible news...

Joan how frightening for you. The one good thing is that you will get news early tomorrow but will probably have a sleepless night, it happens to us all. If it's just in the nodes then you needn't panic too much, that's very common and can be dealt with, lots of posters here have had affected nodes. Obviously with your family history this is all the more worrying, we will all be rooting for you tomorrow.

When they say nodule do they mean nodes?

Hello all, welcome newbies - sorry to see you here.
I've had an odd few days so this will be a bit me me me I'm afraid.
Had my pre chemo yesterday, all fine for the first time, lovely chat with the lady who was next to me as we're on the same routine.
Got home, had a text from a friend about some clothes I'm passing on to her DS, and at the end she just commented on how well I look and how well I'm coping. And I just cried, like mini breakdown, I was distraught and couldn't hold it tohether - not been like that literally for months
DH was taking all the DC swimming so my sister came over, when she left I rang my work counselling service for the first time ever and just cried at them. The lady was lovely and I was on the phone for well over an hour. She rang me back at 10pm to check I was ok (she had said she would) and confirmed I'll get face to face counselling going forward.
I have no experience of this at all, feel a bit lost, but do feel a bit better today. It could be that I'm so close to the finish with last chemo tomorrow then it's off into the unknown again with rads, and whatever I say I do feel guilty about not being at work, but clearly I'm not up to that.
Urgh.
Sorry, I'll catch up properly later.

Pepper you poor thing. I hope you've managed to rest today and have had some family hugs. I really sympathise and think it's often when the 'last' bit of something is coming up that it can all catch up. It takes energy to go through it all and then it's only towards the end - or after - that the reality of it and the toll it's taken really makes itself felt. Please don't feel badly about not being at work, though I know that's easier said than done - my DH keeps telling me to be kind to myself and that my health should come first but this is easier advice to dish out than accept... Doesn't mean it's not right though! Sending and .

Joan hope you manage to get some sleep tonight and offering a virtual hand hold for your appointment tomorrow.

Leslie how are you doing after the first chemo?

Joan so sorry, I meant to offer more than just a 'hope you sleep'! That just shows how much I think about sleep these days - sorry. I only meant that the waiting is so horrible and that being awake at 3 am bit is grim... Just hang in there until you get some answers tomorrow. Hopefully that will make things clearer and you and your team will be able to make a plan and move forward. I think it helps when we feel there's 'action' rather than the anxiety of waiting.

Thank you all for support. The problem is that I don't think I will get answers tomorrow - the fast tracked mri won't be until next week at the earliest. I guess they will do more biopsies of the new area tomorrow? Cannot believe any of this wasn't picked up last time I had an ultrasound - this has been 6 weeks of mental torture. Feel exhausted but know that sleep will be impossible

A gentle hug for pepper I'm glad the counselling service was helpful.

Joan what a fright. You are unlikely to get a definite answer tomorrow, but I imagine your consultant will be willing to give you more details of what they are looking for. I hope they get you an MRI quickly. I hope you manage some rest if not sleep

dinster I'm OK thanks. Mostly just worn out from the day at the chemo unit. I've got the final drug at home in a handy pump as it is administered over 46 hours. So hopefully I won't get tangled up during the night

Waving to everyone and sending love. Sorry I'm too worn out to post anything of much use.

Thank you leslie how kind after the day you've had. Gentle, non-tangly hugs coming back your way.

joandthetribe just before I do the school run - they picked up 'nodules' at later ultrasounds in my breast too - which were just sort of extensions of the main lump. I think these things are much clearer on an mri, hence the next step for you.

Good morning lacies:)
Mrs i will be thinking of you and hoping your Tuesday check up is reassuring.
Leslie, hope you got some rest after your first chemo. I feel for you for having to have it with you all that time. Hoe
Fully today you can focus on something else.
Joan, welcome. What an ordeal you have had! I hope the fact they are promptly going forward will provide you with some reassurance.
Pepper, sending you lots of virtual hugs. I can totally relate. Hope you got some good night sleep and are feeling rested and calm today.
Waving to everybody else and wishing you all well.

Hello and hugs to all. We've just had a week away, much much needed after all that's gone on. We didn't even discuss cancer once which was wonderful and now I'm ready to tackle the next step. Next week I'll be in to start/discuss Tamoxifen and then in again later in the week to meet the radiology team and start planning that. Has anyone got experience of glucosamine while taking Tamoxifen and does it help ease joint pain?

Chewing, so sorry to hear your news but hang in there. As so many PP's have said, that initial waiting period is the worst and now you can get planning. I keep banging on about it but only because the benefit is huge, but will you have the opportunity to ask for the OncotypeDX test?

Celendine, sorry for you too but it also sounds positive and the OnctotypeDX test is fantastic-I had it and it definitely helped me dodge the chemo bullet whereas without it they would have given me chemo without a doubt.

Mrsrhod I hope you get things moving along, good luck.

Hugs to everyone else, not easy to remember the names of everyone when using your phone!

As my friends are so fond of telling me, cancer is a c%^*.

They even sent me a bunch of flowers with this written on the card - the florist must have had fun writing it

Flychickie can anyone have the Oncotype dx test or is there a certain criteria?

I don't know Chewing..my understanding is that it is given if you fall into a grey area regarding chemo and the docs are not sure whether giving chemo is needed or not. I had a grade 3 3mm lump with micrometastases in the SN and so normally would have had chemo. The test determines a recurrence rate of the cancer by mapping the genome of the cells and mine came back very low. Instead of using chemo as a one-size-fits all treatment, the test can spare some people the effects of the treatment.

I don't want to put out false info or give people false hope, but it is certainly worth asking for. Celendine has been offered it also but I believe she is in Ireland? I'm in the uk and the test was offered with NHS x

I had the oncotype test 2 years ago (Leeds), I had to pay for the test itself, but everything else was on the NHS.
It came back that I was not high risk, so it was well worth it to avoid the chemo.