Lacies, elephants, potato-based snacks... Whatever we are, this is our 57th CANCER SUPPORT THREAD

[WhatWouldLeslieKnopeDo]

Welcome everyone to another cancer support thread. This thread is open to anyone with any sort of cancer. And we have plenty of hands to hold if you're undergoing tests for cancer. We are always pleased to wave people off with an all clear, and there's plenty of room here if the news isn't what you hope for.

So don't be shy! We are a friendly bunch and there's probably someone who has been through something similar. Nothing is off limits here. Scream, shout, swear, stamp your feet...

I'm sorry that anyone needs this thread, but very glad that it's here. Cancer is shit. But it's a little bit less shit when you have people to share it with.

Our previous thread is here

I think different tumours respond differently to chemo. The OncotypeDX is usually reserved for node negative ER+ patients because for them chemo can only have marginal benefits. I can believe that in some cancers chemo only has a 4% benefit, but not every breast cancer is the same. I can believe in my case that the tamoxifen only has a tiny benefit, because I am ER 3/8, and 2/8 is considered ER negative.

Flippy we are very similar in our diagnosis, I had 2 nodes affected, diagnosed at 43. I had a mastectomy, ANC, chemo and am 10/18 through Herceptin. I was born with heart problems but my heart function has remained unchanged throughout treatment, so a worsening of heart problems is not inevitable. My ejection fraction is running at a respectable 52% - but it was only 55% before chemo, so nobody is concerned by this.

I notice that Perjeta has been approved by NICE for neo-adjuvant chemo in Her2+ patients in the last few days. If you are considering chemo at all, I would ask your surgeon about this. You cannot have Perjeta if you have your mastectomy first. Neo-adjuvant chemo has the advantage of giving you more time to consider reconstruction options and importantly lets you see how well your tumour is responding to the treatment. The reason why I had adjuvant treatment was because my core biopsies did not detect invasive disease, and so originally mastectomy was the only treatment I was expecting. Most NHS patients have not been able to access Perjeta unless their onc applied to the drugs fund.

Cookie I think we probably all know lots of people who have been to the breast clinic, got a clear result and haven't mentioned it. Certainly one of my good friends has been twice with lumps, only to get the all clear. I also think internet users tend to be younger so you will "meet" more younger people online.

Baubles I hope you manage to get some answers soon. I really feel for you.

Baubles, you can request your pathology report(s). I'm the sort of person who wants to know absolutely everything about what I've got and the proposed treatments, but I know that others prefer not to have all of the detail.

Leslie, exactly, they're already throwing so much at this blasted thing!!

Mysillydog, I was reading about all of the trials involving Perjeta - good news that it's been approved, and it was already on my list (growing all the time) of things to discuss with the oncologist. I'm in Scotland so access to drugs can be slightly different - BCN said that they'd been able to prescribe Herceptin before NICE approved it for example. Yes, I agree, some cancers will respond to certain treatments more successfully, and I can see those tests being available very soon. Hopefully sparing more and more people from being over treated and ensuring that more people get the most effective therapy for them.

I've had a few very busy work days which were great and gave my brain something else to think about! Hope everyone is doing as well as they can.

Chemo: Not true that only 4% of people benefit.
Every chemo is different. Each different sort of breast cancer is different. Each person has a different response.
It may be true that, for some, taking chemo will have a modest extra survival over 5 yrs. But the chances of survival get bigger over time. This is an example picture of the benefit of chemo or hormone therapies for someone with a bigger ER+ BC and a lot of lymph node involvement. Over five years, there would be about a 2% extra chance from chemo. But, over ten, more likely a 5% extra chance. Every result will be different. Your teams should have access to that same predictive stuff and be able to talk through the differences. Chemo is doable. Not fun. Go with team's best thoughts, I'd say.

Interesting discussion about chemo and that graph illustrates it well Amber. I guess it's individual though, so although overall the average difference it makes is fairly small, for the individual it could be high, although most of us will never know if it made any difference to us. If your team recommends it then I would go ahead, as Amber says, it's not nice but it is doable and at least you don't have to live with the 'what ifs', you will know they did everything they could.

I just got my first period since starting Tamoxifen 4 months ago- I was so over having periods so am not pleased to see it return with aavengence- it seems really heavy so am a bit worried about leaving the house this afternoon . Anyone had experience of this? I wasn't expecting this at all.

Hi Fresta
I started tamoxifen 3 months ago, and have not had a period. I have rather assumed that I am in an early menopause, because my onc said that it was probable that would happen. I guess I need to be open to the idea that perhaps my period will come, although I hope not. I'm sorry that your period is very heavy. Before cancer I had horrendous periods and used to use the largest TenaLady night time pads. They gave me peace of mind when I was at work.

I would call your BCN if you are worried about your period. That's what they are there for, even if it's just reassurance that you need

No experience Fresta but my sympathies and some

amber reassuring as usual :) I'm sure those stats will be cheering for anyone with a similar diagnosis

As Fresta says, it's impossible really to know whether chemo has worked for someone or whether they would have been fine without it.

I had six months of chemo following my original stage III diagnosis. Obviously it didn't work in as much as I was diagnosed with stage IV earlier this year. But it was almost three years from finishing chemo to them finding the recurrence. I haven't had a chance to discuss this with my team yet. So I don't know exactly how much the chemo helped. But potentially those six months bought me three years of reasonable health and so much time with the people I love.

That sounds a bit guilt-trippy. I don't intend it to. I wasn't really given a choice on the chemo. Obviously I could have declined if I wanted to. But my oncologist was always very upfront about my prognosis and the need for chemo. He was surprised that I managed three years without a recurrence. So I don't know what I would have done if I had been given a choice about it. Or if the benefits were less clear cut.

I was invited to take part in a trial where I would have received only four cycles of chemo, rather than the usual eight. I considered it carefully. But in the end I declined.

Personally I just saw my six months of chemo as short term pain for potential long term gain. I still think it was worth it even though my cancer has returned.

Flippy good that you've got work to distract you. It's nice to have a focus other than cancer, even for a short time.

Mysillydog I think you are right that lots of people don't tell anyone they're having a lump checked. There's usually at least one MN thread running about a lump. I think most of them get the all clear :)

I think I'm finding out there are no good decisions in all of this. The graph above is from Predict; a similar tool, Adjuvant!, is currently being updated to included the latest data and treatments, so it will be very interesting to see that when it's ready. Running my info through Predict, chemo gives me an extra 1.6 - 2% benefit over 5 years, 3 - 7% benefit over 10 years. Once I've had surgery, I will know how many nodes are affected, if it is only the one that was suspicious on ultrasound and tested positive from the biopsy, it would be the lower percentages.

As everyone says, it's standardised predictions - sadly! I do believe that in the not too distant future there will be individualised diagnosis and treatment. I still haven't had my CT scan yet, so that could change everything again anyway.

Leslie, that's not guilt-trippy at all, and it's good that you are happy that you had the treatments offered. If I find out there is a spread, or there is a significantly improved expected outcome with chemo, then it's a no-brainer, but for me in my current situation, anything less than 10% doesn't feel worth it. My DS and I are just getting our lives back on track after losing DP this year, so it's as much about his quality of life as mine; the short term side effects frighten me, but not as much as the potential long term effects. And there's still no guarantee that it would work for me. I think there are other lifestyle changes I can make too - this is definitely a wake up call to take care of myself. Difficult decisions.

Mysillydog and Fresta my periods have also been horrendous, I already had a coil, so had the mini pill which didn't really help, but replacing the coil (about 2.5 years early) seems to have settled things down. Who knows what's going to happen on that front next though! I found Sainsbury own label pads were good - range of sizes, cheap and non-scented. I really don't get the sickly artificial air freshener thing with san pro at the moment!

Hi fresta, I'm responding to your question about bleeding on tamoxifen. It is normal to still have periods although lots of women find they stop. Tamoxifen works by protecting the breast from oestrogen but it has the opposite effect on the womb, therefore any abnormal bleeding should be reported. I had my first very heavy bleed about 6 months after I started taking it and it was bad enough for me to call my GP who sent me off for an ultrasound. It can cause the lining of the womb to build up excessively and become malignant so they like to keep a check on women experiencing this SE. I've had scans and hysteroscopies to keep a check on mine.mits definitely worth mentioning to your nurse.

I feel like I am learning a whole new language since I have been diagnosed and my head is spinning.

Although I haven't had all the results (and certainly no exact detail) as apparently they are still waiting for some to come back from the lab, they do know that I am HER2+ and it is Grade 3. My BCN said the treatment would be chemo (FEC?) and Herceptin. If I remember correctly (as I don't have the notes I took with me at the moment) she said that I would have to take Herceptin for 12 months once the chemotherapy had finished.

I'm still waiting for the oestrogen/progesterone results but if they come back positive that would also mean Tamoxifan on top of the Herceptin. Does that sound about right/similar to other people?

They said it would be chemo before surgery. I assume that until I have surgery I won't know the extent of lymph node involvement?

I have my first oncology appointment on Thursday so I guess I will get more exact details then.

Going to look up the Perjeta information.

cookie, herceptin usually starts on the 4th or 5th chemo cycle and continues for 1 year. You get a dose every 3 weeks so 18 in total. Each one is given via an injection in the thigh but if you can't tolerate them (I started having really bad swelling and bruising by dose 10) then you can have it via iv infusion.

You'll have heart scans before starting herceptin and every 3 - 4 months until you finish treatment.

As to lymph nodes, yes you won't know the full picture until you've had surgery. Fingers crossed things will come back ok when you get there.

It will be interesting to see what your team say about perjeta, I wasn't able to benefit from it unfortunately

Hello Lacies. I apologise for not being on more often to offer support. It has been rather hectic here and I am starting to get anxious as my next follow up tests loom ahead.i keep imagining all different scenarios!
Tutti how are you. Doing? How has the chemo going for you?
Lesliehow have you been these days?
cookie fingers crossed for you !
Waving to everybody else and hoping to catch up with the newbies.

Hi all. I was here in 2013 after being dxed with stage 3 cancer in both breasts. Aged 36, 3 DCs, youngest 8 weeks.
I'm brca2 positive so had ovaries removed. Have had some post-menopausal bleeding so went for a scan today.
Endometrium is thickened so I need a biopsy. I'm a bit wobbly about it all.
At least I should have any results for Xmas.

Hi weebarra, sorry to hear that you have something new to worry about. Ive been having similar issues, although my menopausal state is uncertain at the moment. I've had two biopsies due to bleeding and thickened endometrium, both times ok. When I saw the gynaecologist last month we discussed a hysterectomy to stop it happening again but we've decided on a watch and wait position. He was very reassuring that uterine cancer, if caught quickly, is entirely treatable through surgery. Im not ready to have further surgery at the moment but I do wonder why they didn't take your uterus at the same time as the oopherectomy to prevent this happening.

weebarra sorry you've got this to worry about. Do you have a date for the biopsy? Fingers crossed for you hopefully mrsrhod will see your post as she's rather an expert on this!

royal I'm good thanks. I'd been wondering how you are. Sorry that things are hectic, and that you've got the worry of the check up

Flippy you just have to make the best decision you can at the time

mrsrhod how are you getting on?

Cookie good you've got some more information. You'll be fluent in Cancerish before you know it

Ah, cross posted mrsrhod :)

Evening all. Had my last lot of chemo today and it's a relief not having to inject myself. Been a long day so I'm feeling tired now. to all

Yay for last chemo chewing I hope you get a good night's sleep

Hi
First time here I got dx today stage one breast cancer
15mm on mamogram 5 mm on ultrasound 101mm from nipple
Can't feel lump it was found on routine mamogram
I have an app on Friday with a view to lumpectomy next Wednesday
My hubbie walked out seven months ago,he was cheating
My dad had his nose cheek and roof of mouth removed with cancer six months ago
I have two kids 15 son 18 daughter
I told dd tonight we will tell ds tomorrow
I have told school so they can support him
Told my work cleared my diary
I am scared witless

Welcome WorriedWife but sorry you've had to join us fingers crossed for your appointment on Friday. You'll feel a little better once treatment has started. How is your daughter coping? Good luck telling your son. Definitely a good idea to tell the school. I hope they are supportive.

School are fab dd is ok thanks
I really don't want to die I'm so bloody scared
I know odds are good but my heads all over

Worriedwife I was exactly in your position 4 weeks ago. I have had a biopsy and the area was removed last week. We were honest with the kids (they are about your dcs age) and they have taken it in their stride. They are worried (we all are). I am going in for my results tomorrow and crapping myself but as the Drs and many people here have said early breast cancer IS curable. I know it's hard but try to focus on other things as the not knowing all the facts is the hardest thing but hang on in there. Dora

Hi worried, it's such a dreadful shock isn't it and I won't lie, it takes a long time to even begin to come to terms with it? However, it's been caught early and the operation you are about to have is very manageable. I had it in May 2014, but I also had a few lymph nodes removed at the same time to check if it had spread. That might be all you need, sometimes it really is that simple. Often with an early stage cancer you might also need some radiotherapy treatment afterwards, but that's ok too and you might have to take a drug for a number of years. But you will come through it, mentally battered initially, but you'll get there.

In the meantime if we can help by answering any questions or just talking and listening you're in the right place. I'm sorry you also have some other difficult situations going on, that certainly doesn't help. I hope you do have some other family or friends around who can offer support and practical help after your op. You won't be too incapacitated but you'll need to rest for a little while.

It's a horrible thing to face but if it's as contained as they think you'll be fine.

Sorry Leslie, I'm well thanks. I've been a bit quiet because there were so many people here recently who I just couldn't help. I didn't do chemo or have to face any desperate decisions. I've also been relishing being out of the hospital system for a while. I know you've had a rough time recently. I hope you're feeling stronger.

Chewing, I can't believe you've finished chemo. That must be such a relief, what's next for you.

Hi Royal, sorry youre feeling anxious again, when are your checks?

I'm experiencing so many hot flashes now, our poor central heating system doesn't know what's going on. We have a British Gas hive control so I can turn it on or off, up or down from my iPad. The rest of the family are catching hypothermia and I was in shorts on Saturday.

Thanks everyone
I am having lymph nodes tested
My worry is its so close to the chest wall at 101mm from nipple
Radiotherapy will be a pain as its a two hour round trip away but I do have friends and family that will help X
Telling my son tonight😢

Good morning all.
worried Hope you are reassured today. It really seems like they have caught it very early and your chances are really good.
So sorry about this happening just after what happened withyour ex and your DF. How has your daughter handled the news?
mrs and Leslie thanks for the thought. My next follow up comes up in about two weeks. You can't help but wonder what is lurking inaide your body and what they will find. I have been so busy with DS who both play football for their school and it has been crazy!
Hope everybody has as good a day as can be.