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.

That's terrible for you Flychickie to be having that kind of head melt with results, and what kind of eejit asks if you had "real cancer" . It's a bank holiday weekend here so just going to try and do the normal stuff for now . Hope everyone has a lovely weekend

Flychickie,
It's not at all fraudulent to avoid chemo. In the future, almost no-one should need it. It was always like "using a cannonball to kill an ant", to quote a paper this week. Still necessary for a good 40% of us at the moment, though.

The hormone drugs like Tamoxifen are more than capable of switching cancer off all by themselves for many people. Radiotherapy is then a good way to kill off the switched-off cells.
So, very real cancer, and a very good solution to it.
Still a heck of a shock when people start talking about chemo, eh.

Flychickie we don't do cancer-lite here! Cancer is cancer is cancer and if you can be told that you don't need chemo but that a hormonal treatment is likely to be best that is great!
I've had a good week with a lovely trip to the Peak District (just on the edge of good weather). Sun has finally arrived in mid-Anglia and I have just had an afternoon out with friends. Paclitaxol on Thursday and my blood test earlier this week was promising so it should go ahead. Having some trouble with aching legs so hoping this can be sorted so I can get decent sleep at night.
Just booked another holiday in a holiday cottage in Cumbria. Been there several times before and it will be gloriously beautiful, quiet and with good food and pubs to hand. DH and I are also planning work on our house, including a kitchen refit, so there's lots to look forward to!
Thinking especially of Leslie and her chemo.

FlyChickie - regardless of chemo, you now have a treatment plan in place and can stop anxiously waiting. Hope you have a lovely time on your holidays.

I haven't posted in a few weeks. I'm finding it real.y tough to get over this round of chemo - it's only my 3rd of 6 cycles and I'm absolutely dreading the next 3. Did anyone find that the sickness got much worse quite suddenly? I will talk to my oncologist to see if she can change my anti-sickness drugs for next time.

Another question - do any of you have real-life 'cancer friends?' If you do, how did you meet them? Did you or do you go to any real life support groups? I'm 33 and feel quite alone with it all.

amber - thanks for posting that link - really interesting stuff there.

Elmindarina - I struggled with sickness around the middle of chemo and got out of hours doctor to prescribe me something stronger. For future cycles my usual doctor prescribed the same as out of hours.
With regards to "cancer friends" there were a couple of people in hospital having chemo of a similar age so have kept in touch. Also have you looked up Shine Cancer Support which is for young people 20s/30s/40s with cancer? If you contact them they will add you to private Facebook group which is very supportive. Let me know if you can't find it and I'll pass on the details.

Shine website here www.shinecancersupport.org/

Elm, I don't have real life cancer friends, but I have booked to go on a Young Women With Breast Cancer course in September in Leeds, it includes an overnight stay in the Hilton, an evening meal and several workshops about various relevant aspects of treatment, recovery emotional aspects including diet, exercise etc. and just the chance to meet other women in similar situations and with similar experiences. Maybe they do one in your area too, it is organized through Breast Cancer Care and my BCN suggested it.

Just to add that shine does have real life support groups in some areas

Sandwich - Thanks for that - I had heard of that charity but never really paid attention to what they were. Looks exactly what I'm after, I've already emailed to join my region's network.

Fresta - I wanted to go on the London one of those but couldn't make it work with childcare. Hope you get a lot out of it.

Thanks all for the words of encouragement.

Fresta I was booked to go on the London one next week but we've decided to take a much-needed holiday.

Sandwich also thanks for the link - I'm signing up too.

El, sorry you're still feeling crap. See you at a Shine group?

Feeling quite upset. I just got home from radiotherapy scan and tattooing and one of the marks is right above my cleavage, it's going to be clearly visible with any kind of low cut top. It's such a small thing, but after everything we go through surely there is a better solution, it just feels like one final insult.

Oh I'm sorry Fresta - sometimes it's the little things that get you, isn't it? I'm hoping the marks will fade in time... Or a strategic dab of concealer? To share my own little thing - my hair has suddenly bouffed out so I look like Melanie Phillips crossed with a sheep. Not a good look!
Hope everyone has glimpsed a bit of sunshine today.

Fresta

I am having my ultrasound core biopsies tomorrow and am not looking forward to it. I do however want to know the diagnosis asap so it's got to be done.

Hello lovely Tamoxigang

I have spent the best part of a day reading several of these threads and have found a bit of relief from the turmoil I am currently going through.

To give you a bit of history; my mum died of BC 17 years ago (she was 53) and it has been my biggest fear since then...

Fast forward to last Oct and my 28 year old cousin was diagnosed with am aggressive grade 3 cancer. Cue lots of panic and (even more than usual) breast checking from me only to find a lump in my left breast. Panic attacks and tears! I was referred to the breast clinic who felt it was nothing to worry about but sent me for a mammogram to be on the safe side (I am 39) the mammogram was clear apart from a small lump that they felt 99% sure was a fibroadenoma - core biopsy confirmed it as this. Hooray!

Fast forward again to the beginning of may when I found another small, movable lump in my right breast, right on the edge near to my sternum. Again, GP felt it was completely harmless but referred me to the BC again. This time i went straight for an ultrasound as a mammogram has only recently been done, and radiographer said he was 99% certain it was a classic fibroadenoma and not to worry about it, but did another core biopsy to be 100% certain..so I didn't, until my follow appointment last Thursday when the consultant told me the results from the biopsy were 'inconclusive' and there was a 'grey area' he was now 50% that this could be a cancer and I now need an excisional biopsy.

My mind has gone into overdrive - how can results be inconclusive? Does this mean I have a rare and aggressive cancer? What if it's not even a breast lump but some kind of lymphoma?

I am in complete panic mode and keep crying, finding it difficult to carry on as normal.

Excisional biopsy booked for 17th June and I am not sure I will hold it together until then. My small lump has definitely grown and now has other lumps around it...what if it's spreading?

So sorry for such a long first post, I just needed to vent and you lovely lot seemed like a safe set of ears. I have 4 children and cannot imagine them having to go through what I went through with losing my mum

Evening all, fresta hugs. I don't know how big the marks are but can you put just a dab of concealer them? Out of curiosity are they not just over where the tumour was? I kind of assumed mine would be at the top and bottom of my scar, one end for the tumour and the other for the nodes.
chewing best of luck for tomorrow, have you managed to keep it from your son? (and celandine as well with your DS of course)
flychickie you can't win can you! Hurray for not needing chemo is all I'll say My MIL has been on the phone to DH complaining that I'm only having 4 cycles of chemo. Apparently "everyone else" has 6.... it's as if I'm not doing chemo "properly". 4 doses of tax & C is enough for me thank you.
I have been zonked this cycle, had chemo 11 days ago and still feel like a wet weekend. My eyesight recovered after 4 days which was a relief. But my brain has gone awol.. I went upstairs a record 4 x today to bring down a letter! Each time I came down empty handed, but had sorted some washing or put new loo rolls in the bathroom for example .
Then the letter wasn't even upstairs. Doomed I tell you.
mysilly and sleepy hope you are feeling better
Waves to everyone else

I type so slowly! welcome Jo, you are indeed in the right place for a hand hold and support. Not sure about inconclusive results but they need t be sure - if only life were like the tv where everything is tested and results come in all in a couple of hours. One day at a time is all I can advise, and sometimes you just need to cry. Have you anyone in RL supporting you?

Thank you pepperrabbit. My husband is being strong and wonderful - I think it's maybe because he still thinks it will end up being 'nothing to worry about' whereas I am thinking the complete opposite. Trying to take one day at a time, yesterday I felt good and strong but terrible again today...

Thanks pepper. Yes, I have kept it hidden from ds so far. Only a couple of weeks until exams are over so I'll do my best to keep up the brave face.

Jo good luck with your results. My dh keeps telling me everything will be fine too despite me saying it won't be. Just their way of coping I suppose.

pepper hope you feel better soon (ignore mil )

Thanks chewingawasp (not sure how to link names yet!) It's the waiting that is tortuous isn't it? - I was soooo hoping I would know either way last week after 2 weeks of mild panicking following the core biopsies, only to be told they 'still' don't know. I actually won't know anything until around 10 days after the excisional biopsy on the 17th....arrgghhh.

Yes, the waiting is the worst thing . You have been unfortunate to have the extra waiting on top. Just try to keep positive if you can (I know it's hard).
.

It's busy on here tonight :)

Welcome Jo, but sorry that you have had to join us. I hope it will just be a flying visit for you (if you want to do people's names in bold, just put a * either side of it)

Fresta I think someone on here had them lasered off. Or maybe it was someone in real life sorry my brain is a bit frazzled at the mo! So you can get them removed in the future if you want to, though you may find that you get used to them. I bet they are not as noticeable as you think either! Not quite the same but I have a very noticeable (to me) blemish, but when I mentioned it to my friend she genuinely had no idea. I assumed it would be the first thing anyone saw when they looked at me! I hope that work provides a pleasant distraction from all of this

Lily very kind of you to think of me. I had my iron topped up today in preparation for chemo, which will hopefully start next week! I have a portacath and I love it. I didn't even feel the nurse inserting the needle, and that was without any numbing cream. My iron infusion aches are just starting so I shall go and smother myself in Voltarol in a moment I hope they can sort your aches out. I assume it's not something that Voltarol or ibuprofen gel would help with?

pepper how many cycles are you on now? Good your eyesight has returned. The side effects do build up each cycle. Make sure you note any annoying symptoms in case there are things they can give to help with them next time :)

Good luck tomorrow chewing

dinster I hope your hair calms down soon!

Flychickie glad you will avoid chemo, whatever any weirdos think it's great that they now have the extra tools to help decide, and to avoid giving people chemo unnecessarily. Do you think they might have meant DCIS? I'm not suggesting that's fake cancer, but perhaps they meant is your cancer invasive or not, or something.

mrsrhod are you still waiting for a follow up appointment or am I in a muddle? Good luck if you are. Yes, it seems bizarre that people know so little about cancer, especially when pretty much every person is going to be affected by it one way or another. I guess it is partly fear, and also the added confusion of inaccurate media portrayal and people not understanding the science. I have always been too interested in medical stuff, so I already knew quite a bit about cancer. I think a lot of people I have told are in denial or don't know how to approach it.

I have quite a few real life "cancer friends". Most I met through this thread and then others from hospital etc. I run a bowel cancer support group locally and I am involved in some CLIC Sargent stuff (they provided me with support after my first diagnosis), so know people through those too. The Shine FB group is really friendly too :)

Elmindarina I struggled with nausea throughout. Definitely ask for more drugs next time. They have lots to choose from :)

Sleepy if you are reading, I hope that you are doing OK

mishmash that's great news. I hope the other issues clear up soon

This post has got ridiculously long. Sorry for anyone I have missed! Hugs to all who need them.

Aha! Thank you WhatWouldLeslieKnopeDo in the nicest possible way I hope it will be a flying visit too, but can't help but think the very worst. You ladies are inspirational though and literally the only thing that has kept me sane today.

It must be so much more daunting with your family history. I am so sorry about your mum

Remember that whatever is going on, they seem to have caught it really early. And treatments are moving on even year by year, let alone in the time since your mum's diagnosis.

I hope you manage to get some sleep tonight

Thank you again WhatWouldLeslieKnopeDo you are very kind. My children are aged 16,14,9 and 2 and the older ones are acutely aware (ans terrified) of cancer due to family history and my paranoia about it i am afraind. One of my biggest fears is having to explain to them that I have cancer - dd1 is currently going through GCSE'S, dd2 has a trial for arsenal ladies this week, dd3 is a sensitive little soul and ds is just a baby who needs his mama. Can't stop my brain from thinking horrible thoughts....

Question - did anyone else's 'lump' get bigger after biopsy? This is worrying me the most I think, imagining cancer is spreading through my body like wildfire. Convinced now that my underarm hurts and I have a cough which is probably lung cancer (although even writing this I can tell how dramatic that sounds) just need to offload. Sorry