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Joining the club.....
Fri, 10/09/2010 - 14:18
#1
Hi,
I'm a 36 year old man who was diagnosed with breast cancer a few weeks ago. I had a mastectomy last weekend and am waiting for the results from the lymph nodes that were removed.
If anyone has any useful advice they could give me, I would really appreciate it, as you can imagine i'm a bit scared and concerned about the next steps.
Thanks to everyone.
Richard
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Hi Richard and welcome to the BCC forums
In addition to the support you will receive here from your fellow users, please feel free to call our confidential helpline for further support and a listening ear on 0808 800 6000, weekdays 9-5 and Sat 9-2.
BCC have published information specifically for men diagnosed with breast cancer which you can read, order or download via this link:
http://www.breastcancercare.org.uk/healthcare-professionals/publications/men/*/changeTemplate/PublicationDisplay/publicationId/79/
Take care
Lucy
Hi Richard,
So sorry to hear about your diagnosis. You are at such a difficult stage, waiting for your results but once you get them things do generally become a bit easier to get on with as you know more about what you are really facing. I was diagnosed in march and am slso 36. It was a total shock and to bf honest I am still in shock but am able to function a lot log better now. I had thd lump removed and have just finished six cycles of Chemo. I feel ok after thd Chemo, it's tough but totally doable. Be really kind to yourself and take support from anyone who offers it. The ladies on the helpline here are great if you need to talk, plus they can probably put u jn touch with another man who has Gone through this. I wish u all thd best with your results and treatment,
Vickie
Hi Richard just wanted to say hi and welcome. Sorry you have had to be on here but it's a great place for support and info.
Agree with Vicki to be good to yourself and just try to take it as it comes. Everything felt so overwelming to me in the beginning but i am getting to the end of treatment now and looking to getting my life back to some kind of normal. There were days i didn't know where to trun and days i felt on top of the world and lucky to be alive.
We are all here for each other if you need anything just ask.
Good luck with your results
Loe
Jaynexx
Thank you for your warm welcome, I'm finding it comforting reading other people's experiences.
There seems to be a big difference in treatments, some people have had small lumps and had a mastectomy and chemo, others have not needed the chemo, some also have radiotherapy.
I only have until Tuesday to wait, but it's going so slowly and I really don't know what to expect.
Take care everyone.
Richard
Hi richard as you say welcome to the club so sorry that you have found yourself in this situation i am having surgery on 23rd so i will be asking loads of questions.I hope your results are possistive 4u. be patience and take each day as it cums i no its hard but try there is always someone here for the moans and groans if you feel like a moan feel free we all do it and it helps. take care elaine let us know how you get on fingers crossed
Hi Richard,
I'm really sorry you've had to join us.
I was diagnosed in April with a Grade 3 tumour, and had a WLE and SNB, nodes all clear, and have nearly finished chemo (2 left- it makes me feel better to say nearly finished!), then I've got 15 rads to come.
I have to say though that I found the waiting and the start of this whole process and treatment to be the hardest part. I remember people telling me that I would feel better once I had a plan and once I started my treatment. I can't remember if it helped at the time but it was definately true.
I think for me the worst bit about the beginning was having to tell people and then dealing with their reactions. In a way once I had chemo and lost my hair it was easier as it was obvious to everyone and I didn't have to answer anymore daft questions. The daftest comment I got was from one person who asked me if I was sure I had cancer as I looked so healthy, it was after my first chemo and before I lost my hair.
People say lots of daft things and I have to say I don't really blame them as I doubt very much if I would have said the right thing before I got BC, and sitting here writing this I am trying to make sure I say the right thing now, so who am I to criticise.
I think for me this forum has been a real haven as it's a place to talk to people who are living the same lives as me, their normal is my normal and I really like that feeling.
I hope that you find that here and if there is anything I can do to help please don't hesitate to shout.
All the best and let us all know how you get on Tuesday,
Joxx
hi richard
sorry to hear about your diagnosis. what happens next really depends on the grade, size, sensitivity to hormones and whether your nodes are affected or not... for some people after their mastectomy they may not any chemo and generally speaking most people who have a mastectomy do not require radiotherapy... but its hormone sensitive then you would most likely have hormone tablets for the next 5 years.
also im just wondering if you had been referred to the genetic service?... 36 is very young for a man to be diagnosed and not sure if you have a family history through your mum or your dads family but would probably we worthwhile having an assessment of your families risk.
hope the nodes are ok and treatment isnt too arduous for you.
Lulu
Hi Lulu,
That's a very interesting point, no I haven't been referred to the genetic service, but there's no history of it on either side of my family. My brother and sister are both adopted, but there's a chance my mum could be at risk, I'll suggest it when I see the consultant on Tuesday.
I feel quite reassured that I might not have to have chemotherapy, although maybe getting used to the possibility might do me some good.
Richard
Hi everyone,
It's been a while so I thought I would update anyone who's interested.
The cancer hasn't spread which is obviously great news, however it isn't responsive enough to rely on hormone therapy alone, so I'll be starting chemo first, with tamoxifen and radiotherapy coming later.
I only found out today, so I've not had time to think about it yet, I can't help thinking that it could have been so much worse than it is, so hopefully I'll stay positive and be ok, but who knows, I might read this in a few months and think how stupid I was being?
I'd be interested to hear any experiences you have.
Richard
oh richard thats a bummer about the hormones...
do you know which chemo regime you will be getting? my tumour wasnt responsive to hormones at all (they are usually termed triple negative if they also arent responsive to herceptin) which also tends to be more common in genetic cancers.... breast cancer can come down the males in the family too but its very rare even with a genetic mutation for a male to get BC, but your genetics department would have a look at the whole of your family tree... i got it from my dad and his dad and his dad before him so i am actually the only family member we have found so far who has actually been affected by breast cancer.... glad your getting that side of things investigated too.
As for the chemo i had epi-cmf which 4 cycles of epirubicin every 3 weeks the 4 cycles of cyclophosphamide, methotrexate and 5-flourouricil (you can see why they call it epid-cmf)every 3 weeks after the epi.... from what i can remember it wasnt too bad at all but my family tell me that im looking through rose tinted spectacles now that its nearly a year since i finished it.... but i recall that it wasnt a piece of piss but it was certainly manageable... but then everybody is different... hope you dont find it too difficult to cope with.
take care
Lxx
A bummer is exactly how I described it, the whole thing has been a bit of a bummer, but will be over in 6 months and forgotten about, one day!
My regime is epi-fec, 4 cycles of epirubicin every 3 weeks and 4 cycles of fluorouracil, epirubicin and cyclophosphamide every 2 weeks. They've told me about all the potential side effects, which sound bad, but like you say, manageable. There's not a lot of choice, is there? Now my life expectancy is measured as a percentage of what it was previously, I need to do everything possible to increase it!
Hi Richard
I felt the same when i was diagnosed, i felt things could have been worse. Do you know when you start yet. I had 6 fec before surgery. Looking back i do feel different now than then but in mostly a good way. I have my odd days of fear and feeling a bit insecure but the process is manageable.
Keep us posted on how your doing, this forum and BCC have been such a support to me. Just ask if you need anything
Jaynex
Hi Richard - I am David - I was in your shoes in 2003/4 - full Mastectomy to right side plus pech muscle - 16 nodes (clear) 6 sessions of Chemo (3x2) split by 25 sessions of Radiotherepy - then Tamoxifen (should have taken for 5 years - didnt agree so only took for 2 years - drug free ever since) I believe the body will look after any problems without the aide of drugs - 6 nearly 7 years later still here and still drug free. Good Luck with your journey if you need to talk to a guy whose been where you are going - come back to me.
I only pop in here now and again to see what going on - few years ago I was very active here. I was part of original set up of the only booklet available to Men with Breast Cancer launched in 2005/6 you may well have a copy.
I have done local TV, Radio,Local & National Newspaper and Magazine work latest being in the Readers Digest August 2010 - if see one around.
Even did the BCC fashion show 2006.
David
So, I had my first session of chemo yesterday, I think it finally dawned on me that I was being treated for cancer. Before yesterday it was all a little surreal, but it's hard to deny it when you're being connected to a drip and injected with bright liquid. I knew this would happen at some point, but it's not been a good week, so I'd hoped it wouldn't happen this week.
As for the therapy itself, I suppose it was a bit of an anti climax, a lot of waiting followed by red wee, which did amuse me a fair bit. Last night was quite heavy going, I woke up at midnight feeling really sick, that kept me awake until about 6, but didn't actually make me vomit. I thought the first session should be the easiest, is that true, or is different for everyone? If so, I think I'm going to have to 'man up' a bit before the next session.
As always, it's great to get replies from people, I've not got involved with any local groups, so this is a really valuable source of comfort. I finally rang to BCC helpline, who were great, they're looking into peer support, which should help a lot.
Thanks to everyone, keep well.
Richard
Hello Richard,
I'm so pleased that you have found your way here and that you are finding it a valuable tool in providing you with the support you need - let's face it, which we all need. My own active phase of treatment is finished and I was very fortunate in not requiring chemo, so my post only relates to the comment you made of having to "man up".
It made me smile, but also to say ... go easy on yourself young man. This isn't a walk in the park for anyone, let alone a 36 year old man. No one can tell you for certain how you will feel at any stage of the treatment, so each and everyone one of us goes in blind with the hope that we will cope. Try not to set too high expectations of yourself ... this whole process is pretty rubbish and everyone just does the best they can. Be kind to yourself, keep talking (even if its only virtually) and hopefully you'll soon find yourself out the other side of the active treatment phase and negotiating your way along that road back to normality.
Good luck with it and remember ... never ever think you need to do the strong silent male nonsense on here. This is the place to express your fears and seek support from those in the same club as you.
Debs x
Hi Richard
Chemo is c**p isn't it? I suggest you let your team know about the nausea, at your next appointment. There are loads of anti emetics available and hopefully you'll find one that suits you. What chemo are you having?
Julia xx
Yep, it's c**p, but the most difficult thing is talking about it with family and friends, who haven't been through it, without sounding like you're winging, hence the man up comment. I think I've apologized in the last 2 days more than I have in the last 2 years. I suppose bottom line is that i wish that none of this had ever happened, can you tell I'm having a bad week?
I'm on epirubicin for 4 cycles followed by 4 of CMF, what's yours? The anti emetics I've had are iv aloxi and emend tablets, with some maxalon to take if needed. Can anyone let me know if these have worked for them, or if they haven't what they tried that did work?
Richard
Hi Richard
I took emend whilst having chemo and was so grateful that I did. My first lot of chemo I vomited continually for 24 hours and was admitted back into hospital. I read about emend on this forum and mentioned it to my consultant. He was rather reluctant to prescribe it due to the cost but I persisted. It did not stop the feeling of nausea but I didnt vomit which for me was a godsend, I was also prescribed Dompridon (I think thats how its spelt!) I took them religously. Good luck with the treatment. It is hard but you will do it.
Love Karen
Hi
I had FEC-T, so slightly different, tho epirubicin is in the FEC. I took ondansetron and had no nausea or vomiting at all, tho I was probably just lucky!
Julia xx
I think I should count myself lucky then, although I feel very nauseous, at least I'm not vomiting.
Thanks to you all for your comments..
Richard
Are you taking your anti-sick tabs i found eating a hard boiled sweet helped its a horrible feeling take a few deep breaths take care
I got given emend for the first couple of days and metoclopramide to take when needed.
It's been a few days now, and a lot of the side effects have been and gone, the tiredness over the last couple of days was incredible, I don't think anything anyone could have said would have prepared me for that, it feels like the jet lag you'd get coming back from the moon! And yet, I still can't sleep?
I feel better now the tiredness is getting better, is there anything else I can expect, or will the next couple of weeks until the next session be ok?
Richard
Hi Richard,
I'm on the same as you, 4 x epi and 4 x cmf, over 28 weeks, I had my first epi on the 1st oct am due 2nd one this fri, had a fair bit of nausea day 2 - 6 but then just waves every so often, so feel quite lucky really, will let you know how things go after fri, nice to compare notes !!! take care,
Belinda xx
Hi Richard,
I've only had Epirubicin as part of FEC so different but my SE's from it were pretty much gone by day 8-10. From then on I would be pretty much ok until my next session. I found I got a little more tired than normal but that was it. Each time I felt I had completely recovered by the time I had the next. I went back to work each time after the SE's wore off and managed fine.
I would have to say that I thought my first session was by far the worst one of the whole lot. I didn't get Emend until my second session and I can't tell you how dramatic the difference was. With my first chemo I had uncontrollable sickness and had to have injections to stop it, where as with the Emend I had only nausea.
When I went back to my Onc I told them each time what my side effects were and they gave me a new bag of tricks to help with them. By the third FEC it was 85% easier than the first one.
My best advice would be to do the complete opposite of man up. I finished my chemo last week and honestly I think you really have to feel emotions as they come or else you will drive yourself nuts.
I find it hard to talk to my family and friends too. I have used this forum as a place where I can be completely honest. Everytime I've felt like crashing I've come on here and blurted the lot! I joined a thread for people starting chemo in June and it has honestly been my complete lifeline. Having people who are in exactly the same place in treatment has been great as it helps me feel 'normal'.
All the best and good luck,
Joxx
Hi Richard
You may find it helps to ask your onc for zopiclone for sleep. If they give you the stonger ones ie. 7.5mg, you can take half and then build up a stock. My gp refused to give me any more as they are mildly habit forming but they were a Godsend during chemo!
Julia xx
Thanks, I'll ask for zopiclone and see what they say. Also, did any of you get headaches? For the first 5 or 6 days I had a headache which I couldn't get rid of, it's not a huge issue, but it's something that I'm hoping they'll be able to manage to make the whole experience a little less unpleasant.
Although I'm only a couple of weeks into chemo, I've started to lose my hair, but it's not somewhere that most people will see, if you know what I mean! I imagine now it's started, it won't be long before the rest goes, I think I need to buy some hats.
Richard
Hi Richard
My hair went around day 16 it seems to be the 'norm' so beware!
Good luck with your treatment, and yes great source of support this site
Denise x
Whilst watching tv last night I scratched my head and a clump of hair came out. All day vie been trying to decide whether to shave it now, or wait a bit longer. In the end I decided to go for it, so I now have very short hair.
I know it's meant to be different for men, and I suppose it is in a way, but it was still difficult and made me feel sick. But now it's done I feel much better, I've taken control, when for the last 2 weeks I've been waiting for it to fall out, so it's nice to turn it around. It's very cold though!
Richard x
Hi Richard I just realised that you were on this thread .It sounds as though you have had your share of trouble.You seem to be a fighter and thats what you have to be of course.Short hair is in vogue at the moment so Im sure you can wear it well.I am a hat man myself and now could be the right time for you to invest in a stylish Hat.Hang in there.
all my best wishes
John
Hi Richard
Hope your doing okay? I didn't get Emend until half way through treatment and i cannot say how much of a difference it made to me. I would say just be careful what you eat for those first few days. Anything acid or rich upset my stomach so i kept to quite plain things salad and baked potato was one of my favorites and i loved tomatoes on toast. I think we all go through the same emotions male or female. There are some great hats out there for winter i will keep wearing hats now.
Hope your well
Jaynex