Breast Cancer Now Forum

I’m sorry to hear this Helen, it must be very distressing for you. I was 46 at diagnosis with teenage step-children. Have you discussed your fear of recurrence with your oncologist? In the end it’s a bit of a lottery though. I had some counselling which helped.  Perhaps focus on creating and recording lots of memories with your children that they (and hopefully also you) can look back on in the future. Sending you my best wishes.  ... View more

Hi Helen. I’m pleased to report that I am well and enjoying life. Still working full-time. I now do a lot of exercise which helps with stress and the weight gain from Tamoxifen.  I do still worry about the future a bit, but what can you do about it? Sorry you are going through this but at least cancer teaches you to grab life and enjoy it!  ... View more

I’ve had 2 lots of lipofilling by different surgeons.  One procedure was very successful, the other is still causing me endless problems (fat necrosis and scarring) and is not reversible.  Be warned - it is far from risk free and, in my view, is highly dependent on the surgeon’s “artistic” skill and some luck.  The surgeon who did the good op told me that fat from certain parts of the body is better quality for this procedure and produces a better result.  He told me that tummy fat was the least successful type, and the best type to use is from around the knees! We compromised and he took fat from my inner thighs, which has left a small dent.  But that fat definitely took better than the tummy fat injected by the other surgeon. It’s also better to do a small bit first and then add more later that try to output put in too much fat at once.  Be warned also you will get some truly dramatic bruising at both harvesting and injection sites! Good luck - hope you get the result you are looking for. ... View more

My oncologist has suggested i do 2 years on Tamoxifen before swapping to Zoladex + AI (I refuse to have my ovaries removed).  Apparently this replicates a research study done.  However, I don’t think there is any particular benefit to staying on Tamoxifen for a particular length of time before swapping to an AI once you are post-menopausal because the AIs are more effective at suppressing the cancer cells.  But you might want to ask your oncologist about managing osteoporosis risk with AIs and any other side effects that might be problematic for you. Good luck.   ... View more

Just to say that i can strongly recommend laser hair removal - it isn’t cheap but it can be life changing.  But make sure you go somewhere reputable where they are fully trained and will do all necessary tests on your skin tan levels. You can buy at-home laser hair removal devices now (in Boots and other stores) but I haven’t tried these personally.   ... View more

Hello - the chemo drugs can give you terrible depression and anxiety.  It’s just another physical side effect they can cause, but I don’t think this is properly explained - at least it wasn’t to me.  Please do let your breast care nurse, consultant, chemo unit or GP know as they can prescribe something to improve your mood.  I found my mood suddenly lifted about 3 or 4 weeks after i stopped chemo.  I also know the frustration of people telling you to “be positive” or similar.  They have no clue.  Unfortunately you can’t really understand this until you have been through it yourself.  Does your hospital have a support unit (e.g. Maggies) where you could access a support group, counselling or complementary therapies?  Or could you get to a branch of The Haven?  They offer free therapies such as reflexology, aromatherapy massage, acupuncture etc which some people find helps them to cope better with treatment.  I was advised to take up yoga which i thought was a mad suggestion - but it really works!  When i was awake all night and anxious after chemo infusions (it’s the steroids ...), I sat up watching comedy box sets on All4 and iPlayer which distracted me a little from worrying. Or listening to audio books or podcasts can help send you off to sleep.  Don’t be afraid to ask for help.  No need to worry about the future today.  You will have plenty of time to plan the next stage of your life once you have finished all your treatment.  For now, just focus on coping with today. That’s enough. You are on benefits at the moment because you need to be and you are entitled to be. No need to feel bad about that at all.  It is what the benefits system is there for.  Call the BCC helpline or Macmillan if you need to speak to someone who understands.  Take care of yourself.  Xx ... View more

I think they will only do an oncotype test if you are node negative.  Conversely, if you are node positive chemo is normally recommended.  Interesting that your onc thinks you are borderline - maybe the tumour in your sentinal node was very small and/or your tumour is low grade?  I think this is a decision you will need to take in consultation with your oncologist.  Ask for some statistics on what extra survival benefit chemo might give in your case.  I just wanted to say - as someone who has had chemo - that there is no need to be terrified.  It isn’t something to volunteer for obviously, but it isn’t that bad either.  They have a lot of medications now to relieve side effects.  It just made me feel jet lagged/hungover which is not great but you can cope with it. I carried on doing most things throughout, including using busy public transport, shopping, theatre, dining out etc.  I worked part-time.  My hair fell out, but has grown back quickly.  So ladies, if chemo is recommended for you please don’t worry too much - you will be fine.    ... View more

Hello Veggienut - sorry to tell you that numbness in your arm (underneath the upper arm and in the armpit area?) will probably take at least 6 months to resolve and you will likely always have some numbness in the armpit.  Sorry!  However, I think the pain you are experiencing is more likely to be axillary web syndrome or “cording” - is the pain worse when you stretch out your arm and feels like there is a tight string running down it?  You may even be able to see some “cords”.  If so, you might find gentle self-massage helpful.  Ideally ask for a referral to a physiotherapist at your hospital who knows how to treat cording.  If your arm feels dull and heavy, that might be the start of lymphoedema, in which case consult your BCN or specialist for manual lymphatic drainage and/or a compression sleeve to wear until your arm improves.  Do remember to follow your hospital’s guidance on exercises to strengthen your arm and promote lymph flow.  Deep breathing (yoga-style) also promotes lymph flow.  Hopefully you will start to feel better soon.  It is a tough journey, but you are here and you will make it.   ... View more

Hi Georgia - when you get to question 14 it says tick all that apply.  However, I have not experienced any of the listed issues following treatment so can’t tick any of them.  BUT - if you don’t tick at least one the survey won’t let you move on to the next page. Therefore only people who have experienced one of the listed negative effects can complete the survey!  Even filling in the “Other” section makes no difference.  Surely you need a “none of the above” box?   ... View more

BTW happy birthday.  Mine is 26/03 so we are almost astrological twins. I would go without your wig!  Celebrate your new hair.  Have you got the “chemo perm” yet?  After 12 months, my hair is just starting to grow through not curly.  Now it comes down to about the bottom of my ears.  A bob is not that far away.  Ah chemo, it gives you a different perspective on life!  Hope your pain goes soon (does your physio snap your cords - ping!?). Take care.  Xx  ... View more

MLD is Manual Lymphatic Drainage ie a special type of massage that aims to move lymph fluid around your body and stimulate your lymphatic system to work properly. You can see videos of it on YouTube and learn to do it to yourself to some extent. Dry brushing to move lymph fluid also recommended. There are some useful lymphoedema sites with info about these types of techniques. My consultant says exercise is really important for preventing lymphoedema. Sorry to those with cording - it is ****** painful. It should go away in time though. If you are on radio you are on the home strait and the finish line is hoving into view! ... View more

Hi - sorry to hear you have to have this done.  It is worth it though because i know from experience that the chemo by itself isn’t enough to kill any tumours further up your lymph node system, so the op can save your life.  Ask your surgeon whether he is taking out up to level 1, 2 or 3.  Everyone has a different number of lymph nodes but the higher the level removed, the higher your risk of Lymphoedema.  After the operation you will have a lot of numbness and strange nerve sensations in your underarm and the back of your upper arm.  The back of my arm was numb for about 6 months but is ok now.  I also got, and sometimes still get, some strange sensations in my arm. After the operation i had cording which is like a string running down your arm - usually you can see the cord.  It is damaged lymph/venous vessel.  Sorry to tell you it is very painful but it usually goes after a few weeks/months and physio can help a lot.  Then you need to do all the exercises the hospital physio shows you to regain mobility.  Plus long-term you need to exercise your arm in the right way to reduce your risk of Lymphoedema.  I have a very slightly swollen patch above my elbow that I have had since the op and have also experienced slight swelling in my hand.  At the moment i use a sleeve when my arm is tired and for any risk activities such as flying and have MLD.  That seems to be keeping it all under control at the moment.  I know that all sounds scary but other than avoiding lifting heavy weights, i am using my arm completely normally and have a full range of movement and hopefully you will too.  But do stay on top of those exercises and ask for physio if you need it.  ... View more

Hello - good news re your plastic surgeon.  I think the problem is that the breast surgeons work to guidelines that say they can only remove an unaffected breast if you have significantly elevated risk of getting a contralateral cancer in future (e.g. BRCA gene), although as you say they are allowed to do symmetrisation surgery.  However, i think there are some ladies who have managed to get an elective double mastectomy by insisting it was necessary for their mental health going forward, which seems to be your position.  Of course if you have the double DIEP it may not work at all or not on both sides and you will have no feeling in either breast - just to be aware. And you may need further corrective surgery to improve the shape (as i do).  Would you feel happier if you were able to have, e.g. an ultrasound on your unaffected breast every 6 months so that any issues that did arise could be caught v early?  Are you also having chemo?  Can you start that now while you continue to explore your surgical options?  What does your medical oncologist say?  Best of luck. Xx   ... View more

Good move to see the psychologist and the surgeon. People who haven't had this don't realise how much money you can spend trying to get much needed additional help such as counselling, extra physio, MLD (and some of course don't have that option).  I hope you feel more in control now and get the best outcome for you in the circumstances.  Best wishes.  ... View more