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.

Leslie I am so sad that you have secondary recurrence.

Oh Leslie ,crp.CRP .

You must concentrate on yourself and do whatever it takes to get you through ,I'm worried you'll feel you have to keep responding on this thread with your usual loveliness and care for everyone else .

I'm virtually holding your hand . x

Leslie, you are in my thoughts. I feel really sad that you are facing secondary cancer and I pray your team can come up with a good plan for you.
Sleepy, glad you are getting out and about and I hope your pain is being managed a little better.
The pair of you have made me come to my senses today and made me realize that a little swelling and worries about what I'm going to look like isn't worth feeling down about!

Rust, thinking of you, how are you getting along with recovering from surgery?

Amber, thanks for info, did some googling and although it sounds like it will be a long time before the new surgery will be available on the NHS it does sound like a promising development. I also did lots of reading around lympoedema, and found a couple of reports of cording being associated with some localised pitting edema, which does seem to match my symptoms as the swelling is confined to the areas where the cords are along the inner side of my arm and down to the wrist. Fingers crossed that this is the case and it will resolve when the cording does.

I have been advised not to start Tamoxifen until after rads, but with the delay it is likely to be mid until mid July before I start my first session and my BCN advised me to wait 3 weeks after they finish before taking it that will put me approx. 4 months post surgery? I'm worried this is a big risk for recurrence?

I must go and do something else today, too much analysing research is getting to me. Off to poke my garden before it rains, I hope you all have the best day possible.

leslie I'm so so sorry to hear your news, as you say, I'm sure your team have an excellent plan (they've had a month to formulate it!). Evil bastard cancer. Having the rug pulled out from under your feet is so very cruel, best wishes.
fresta your arm sounds very painful, I hope the swelling and cording ease.
I've been feeling utterly awful since my second chemo and had descended into a teary mess, not helped by the district nurse yesterday who was clearly put out that the hospital requires her to check my dressings every 2 days. I explained (as indeed my notes do) that the previous infection and the new opaque dressing means they need to keep a much closer eye on it, but she made me feel like a drama queen and then insisted I should have got myself a saline prescription (what?), and be doing the injections myself (which I probably will now they are pre-mixed!). Then she said she used to be an oncology nurse .
But actually, in the great scheme of things and with some perspective, I'm ok.
amber I find your posts fascinating so much knowledge.
sleepy glad you're mobile and more comfortable.
royal sorry you're down, I agree that everyone else is so terrified of the "cancer" word that their fears are projected - it has to be fine, you have to be ok, you have to battle on. But actually it's just shit, living it is shit and coping is pretty much all we're managing because you have to exist. I've had to distance myself from a really close friend, because she obviously knows more about it than me as she has another friend who had breast cancer treatment 2 years ago.
Waves to all - the nurse is back..

Leslie, I can't express how upset I am to hear this latest news. Like everyone I am hoping your team come up with a plan which will turn this into a long term niggle rather than a major crisis. Sorry if that sounds naive, I cling to Ambers words of wisdom. I guess it will mean more treatment though so I'm also sorry for that. You have been tirelessly supportive despite having a different sort of cancer. Do let us know what the plan us and let us look after you for a bit.

Fresta, sorry to hear about your arm, I know in light of recent news on here it's at the more minor end but it's still a life changing condition if it becomes permanent and a continued daily reminder.

Pepper, your nurse sounds a delight. How awful to grumble to a cancer patient that they need her care, words fail me. I hope she's nicer today.

Sleepy, I hope you are more comfortable now and the pain you mentioned recently is being controlled.

Hello to everyone else, I can't look back to the previous page without losing this message but I think of you all everyday.

Hi everyone
Leslie I'm so very sorry about your news, and quite shocked that you waited a month for you results. I hope your team can come up with a management plan. I'm not sure if you do FB, but the Shine young adult cancer support group has younger bowel cancer patients and is quite a fun and supportive community.
Sleepy I'm glad you have support to get out more.
Pepper your district nurse sounds like a charmer! I would get her to show you how to do the injections, so that once your dressing issues are sorted you will not have to see her again. But since she has to come to you anyway she shouldn't be moaning. I'm not sure why she thought you should have a saline prescription if you haven't been told this. Knowing these things are not your job.

I have a place on a look good feel good workshop on Friday. Maybe I will finally learn how to do makeup!

Nurse turns up, she's all sweetness and light, of course we'll do your dressing etc, gosh you're doing well blah blah.
Then hands me a Patient Feedback Form... hello karma

Leslie , you are always supporting everybody on here with such grace and kindness. I am sincerely sorry and upset about your news. Please please do not feel like you need to shield us from how this is affecting you. We are all in this together and there is nothing I would like more than for you to be able to come on here as we do and unload if you wish to. Damn the cancer for being so bloody cunning having given you a three year break only to come back again. I hope your treatment plan does what it is meant to do.
Thinking of you today. Blessings.
Waves to everybody else.

I've just realised how young you are too Leslie. Please come back and tell us there is an amazing plan to sort it out.

Rust, Tuppeny - I will hold on to my paper for the moment then - it isn't all doom and gloom (I found it all very interesting) but understand the prognosis bit might not be helpful at the moment.

In terms of the other things I looked at, the only one I was able to do was therapeutic fasting (I have a whole other thread about my experience in the Fasting topic). I didn't have any tumour left at the end of chemo to do the tumour profiling (and there wouldn't have been any point in using the tumour they had removed for biopsy at the beginning of the process, as your cancer evolves and changes), and I couldn't do the PARP inhibitor trials as I was negative for the BRCA gene so I didn't fit the criteria. The immuno- suppressor possibilities are still quite limited for breast cancer (they tend to be more successful for things like leukemia and melanoma) and thus I was more keeping an eye on developments to see if any clinical trials were coming up, rather than tested treatments available right now for BC.

I watched a fascinating documentary based on a book (which I think some on this thread have read) called Cancer: The Emporer of all Maladies, which was brilliant although a bit of a tour de force (3 x 2 hour programs). Something the author said struck me at the close of one of the episodes - I will misquote now, but was something along the lines of "we only continue to make gains in the world of cancer treatment because we refuse to accept the status quo, and it's because of these doctors and patients refusing to accept it, that we have made the incredible progress we have...."

I was at my lowest ebb when watching it - I was convinced of a recurrence, and told DH I was not going to sit back and accept the status quo - I would not do the normal chemo and surgery and then have a scan at 6 months to find it was back and metastisized - I would research and read everything possible, and do as much as I could.... of course in the end the road is slightly less obvious as I had no tumour left to profile and turned out to be BRCA negative, so wasn't eligible for the trial for the pill which might (might!) lower the chance of recurrence. And I may have gotten the placebo anyway...

Anyway, a long way of saying that I have felt pretty useless not having the back up of a pill to take to lower the chances of recurrence, and in a really strange way, my recurrence (if it comes) will be worst than some, as I have had a double MX, so if mine comes back, it's going to be mets (as there is no breast tissue left for another primary BC....)...

It's all a head fuck. One which I thought I had dealt with but coming back to this thread and a few other cancer related things since my surgery last week, as opened it up a bit. I am not over it, despite my previous post to the contrary, clearly.

I'm so sorry Leslie - I don't know you but I wish I could find you and hold you.

Hi everyone.

Thank you so much for your kind words :) I'm a bit exhausted after the last few weeks so I will just do a short post. Sorry not to reply to everyone individually.

My early morning post was definitely at my lowest ebb. I was dreading today's appointment, but actually the news was not too bad at all.

I have several very small tumours in my lungs and some affected lymph nodes.

The current plan is to have chemotherapy to stabilise the tumours and then I will have Cyber Knife treatment.

My surgeon was quite upbeat about it all. I will seeing my oncologist tomorrow. He's always gloomy, so I'm glad I saw my surgeon for the full diagnosis. Hopefully the oncologist will just explain the chemo and give me the forms to sign.

I know we always say it, but I really do feel better now I have a plan! I'm hoping they will start chemo next week as I'm quite impatient.

Sleepy I'm glad you are able to get out again. If anyone says anything stupid or insensitive you could always run over their toes...

pepper I hope the nurse did a better job today, even if not for the right reasons. How shameless must she be! Like you would magically forget her previous behaviour.

Mysillydog I've joined the Shine group. I met another young person with bowel cancer recently and he recommended it. Maybe we will cross paths there

Leslie, sounds like they have a good plan for you. I'm so pleased. My bil and niece both had chemo for bowel cancer and both kept their hair so I hope that will apply to you too, one less thing to worry about. Having a positive dr makes such a difference to how you process the news, I'm glad you had a positive experience today.

Boobz, it's all pretty recent for you too, don't beat yourself up about feeling bad again. It's great you've been so positive and busy, it's also fine to crash from time to time. I don't expect to get over it but I expect to learn to live with it and give it less head space.

Boobz thanks for the extra info, sorry you didn't qualify for trials. We've just got to hang on in there until the next breakthrough I suppose. I'm definitely going to badger for my tumour to be profiled though, so thanks for that prod.

As Mrs says, no shame in having a crash, in fact it's probably essential or we'd all be loopy. You sound to me like a hugely intelligent, resourceful woman who's doing the very best with the cards she's been dealt. Your achievements in maintaining/regaining fitness after treatment are truly impressive. My money's on you staying healthy.

Leslie so glad you had some upbeat news . Here's hoping you can get the chemo bandwagon rolling soon and stabilise those tumours.

I've just received a copy of my path report. Wish I hadn't asked for it. It's terrible. 2 large tumours, largest 61mm, with large amounts of dcis inside, 3 nodes with metastatic carcinoma and one with micrometastasis, extensive venous and lymphatic invasion. Npi very poor. Feel like I have no chance. So very depressed.

Sorry you are feeling so down rust. I do not know much about the lingo on those reports, but something tells me it is not worse than what many here have had. Survival rates from breadt cancer have in fact gone up and i am sure Amber can quite trustworthy stats on this. I know nothing I can say will make it go away in your head, but hopefully as treatmnet kicks off you will start to feel less hopeless.
Holding your hand in this virtual world.

rust, the black and white numbers are always terrifying I think, I had no idea I had lcis as well as the invasive lobular cancer until I had my last letter, but I have just found this on the cancer research website re NPI
"The NPI is based on information from a group of patients treated some time ago and very few of them had treatment after surgery. Treatment results have greatly improved since then. So it may not give as good an outlook (prognosis) as you actually have, if you are having treatment now"
You are young, previously healthy etc so your outcome will not be the same as an older woman with existing problems as far as I can tell. Hope that helps a little.
Are you able to distract yourself by the reality of having a baby on Friday!

Rust I'm so sorry that your report was upsetting. But the extensive DCIS is not a worry and the fact that there were only 3-4 positive nodes is also quite encouraging. The best thing is that all these tumours are now removed from your body, and shortly you will be starting chemo to blast any remaining cells. I don't know much about the NPI.

I'm so sorry that you are going through all this when pregnant. Your induction must be coming up quite soon, and I can only guess how anxious you must be feeling.

Rust I always think it seems worse when you see it in black and white. Lots of ladies on here have had lymph involvement it is quite common and just means that they will throw everything they have at it. Big hugs to you

Love to Leslie and hope you can get started on treatment soon x

Rust, I'm sorry you have seen something scary, did that just arrive through the post? Surely these things need to come with an explanation, I'm a bit shocked if you just receive a set of figures and have to then worry yourself silly. From my very limited knowledge NPI is really quite outdated so please don't stress on that one. The number of nodes doesn't sound excessive. Do you have a breast nurse, this sounds like an ideal time to give her a call and get some proper context around this. Or alternatively call Breast Cancer Care and talk to one of their nurses, they're very kind in my experience, but speak to someone today please.

Hi Rust - am so sorry you have received a report which has upset you. I felt the same when I got mine back and it said Triple Negative - I felt like I had been handed a double curse - breast cancer AND the slippery kind. But knowledge is power. Use the information to really push for the most aggressive treatment possible, to ensure nothing is left on the track (excuse the sports analogies - I've got too much running training going around my head from my marathon!) Speak to your oncologist and find out what treatment plan they have to tackle this - it's not metastized beyond the nodes so is still curable. You can absolutely live through and beyond this, although I know it feels incredibly scary right now.

Oh and don't take much notice of the NPI - TN is usually always grade 3 and therefore our score always gets bumped up the charts, but being grade 3 means that it reacts very well to chemotherapy - and has already been pointed out, lots of new more effective (especially for TN) chemo drugs have been developed since the Index was invented, making the NPI pretty redundant in practice (or that is what both my Oncologist and TNBC PhD friend told me, when I asked about mine).

What I really want to say to you, but I know it will be impossible to heed (as I know I wouldn't have been able to at your point as well, before the treatment started....) is ENJOY this time with your new baby.... you won't get it again! And when you are well and healthy next year (which statistically you will be) you will want to have that time again and just revel in it and take all the worries away from it.... if you can, try not to worry as worrying won't change anything right now, but it will stress you out and having a newborn can be stressful enough!

Wish I could say the right thing - but tbh there is no right thing right now - it will start to get better once the plan is in place - of that I am sure.

Take time to cry it all out - I did and it does help, strangely (or it did for me!)

Rust, actually, that's not a bad set of results at all. I know you'll think I've taken leave of my senses, but even on the Ancient Treatments of Ye Olde Days, your odds with that result would have been very good.
And that was before the modern brand new treatments and combinations existed. NPI doesn't take into account any of the modern treatments at all.
I've run it through the calculators I have access to as an interested amateur who reads the reports every day (for five years...). Looks fine.
Seeing things written down always looks eek. It's bound to be a shock. But it's all doable. They'll certainly throw a good bit of surgery and chemo at it. Not in that order. But triple neg is fairly easily killed by the right chemo combinations. They definitely need to do a genetic test on the cancer, to find out what will best kill it. Something to ask about, if you haven't already.

Large for you, I think.

Thank you so much everyone. Feel slightly less in a tiz now. Also spoke to bc nurse who was very calming. Should I be asking for them to do the genetic test now ie before my appointment with the oncologist on 24 May? Also what are the latest chemo/treatments that I should be asking about?? Bc nurse only mentioned fec-t but I've also read about carboplatin? Thanks all so much for your wonderful support and wisdom. I hope everyone is ok. I will do my best to try to concentrate on the new baby coming and enjoy him for a good few days before everything kicks off again. Thanks so much again everyone, I really do appreciate it.

I think you might find they will claim there is 'no need' for the genetic test. This is probably going to be because it costs extra money. I think it's important enough that I'd pay for it myself if I had the cash. I hope I am wrong, of course,and they are keen to get a full analysis of it. It would certainly be good for them to have as much technical detail as possible on its weaknesses.

As for which chemo - that'd depend what sort of triple negative it turned out to be.
I had FEC-T for mine, and effectively we had to treat it as triple neg, as I reacted so badly to Herceptin. But I got a pCR from the chemo (the cancer disappeared completely whilst taking chemo). That's a very good sign. So that combination can work very well.
Not sure that's a full set of answers - but it's a start.

Rust - I too would have stumped up the cash for the genetic test, as per Amber. I had BUPA, but never had to ask the question whether they would have funded it or not (as my tumour disappeared with chemo and I only really did my research about 3/4 of the way through my treatment, so didn't know to ask for the test at the very beginning...) but if you are NHS I defo think it's worth exploring if they can't cover it. It's about 5k I think, which obviously isn't a small amount of money I know...

I had carboplatin - (as well as the EC in FEC, and paclitaxel weekly for 12 weeks), and I also go a pCR but of course your oncologist will know about your cancer than me or Amber so I'm sure she'll have some answers for you if you don't have the same drugs as we did.

Are you doing the BRCA gene test? Get that too and if you're positive, look into the PARP inhibitors trial too.

Glad you are feeling a bit better. SO exciting that baby is nearly here! Do you know if it's a boy or a girl? Any names yet?

Thanks both. I'm a bit confused. Is genetic testing the same as the brca gene test or are they different things? My surgeon definitely mentioned sending me for genetic testing but no one has mentioned when. Do you think I'm best staying with nhs or going private? Dh has private health care through work which covers us both. Am I likely to get more chemo options privately? Sorry, I'm absolutely clueless and my brain is total mush at the moment with one thing and another! Also what is therapeutic fasting? I have dramatically altered my diet and will be exercising regularly when baby has arrived but interested in this. Have read that dramatic calorie reduction may prevent recurrence? Also any supplements I should be taking? Currently taking my pregnancy multi vit and have just started a vit d supplement. Had read that melatonin may also help. Thanks for all your help.

Not sure on baby names yet-we are far less organised than we would have been but for the bc diagnosis. We have a few we like but will have to see what he looks like when we meet him!

Hi rust, glad you're feeling a little better. With regard to NHS or private, we have BUPA cover but my case was pretty straight forward - WLE, SNB followed by rads and tamoxifen. It was all over very quickly and the NHS were great. Going private would have delayed things. However, we did contact BUPA and they gave me a dedicated nurse who called me regularly and I had full access to their oncologists so it was and still is a good back up and I'll certainly be speaking to them again should things change for me. In addition, not that you're thinking of finances at this time, if you have your treatment on the NHS, with the cover we have, I was entitled to £100 each day I was in hospital for treatment, so 1 day of surgery and 15 days of rads. Of course, that's not what I based my choice on, we were well into the treatment plan before that came to light, but it was a nice bonus at the end.