Breast Cancer Now Forum

Hi Lin - my clinical oncologist said to me that people are on a spectrum of what their main concern is from, at one end, cancer removal whatever the other physical side effects (e.g. wanting a prophylactic mastectomy on an apparently healthy breast) to at the other end being more concerned about side effects and long-term issues caused by the treatment itself (e.g. preferring not to have chemo if a grey area).  I will happily admit that I am the latter type and will only consent to treatment once I am convinced it's really necessary even though I have a Stage 3a diagnosis (which of course meant i had to have the chemo even though i would have said no given a choice!). The oncologist said it isn't that one approach is wrong and the other right, it's just helpful for you to understand where you are on that spectrum and what your main concerns/fears are, and also to communicate that to your treatment team when discussing options.  So I guess the question is are you more concerned/fearful about not being given a type of treatment that might increase by a small amount your chances of avoiding the cancer coming back OR are you more concerned/fearful about going through the chemo process for only a small potential benefit and maybe having short, medium or long-term side effects as a result?  Either position is completely rational, but it might help you to be clear how you really feel and be open with your oncologist about that.  Have you seen the NHS's easy to use Predict tool which is designed to assist with thinking about the chemo decision? http://www.predict.nhs.uk/predict_v2.0.html   Best of luck, Susan  ... View more

Hi Hayley, I have just recently had a DIEP done.  I was told I couldn't have an implant due to me needing radio which can damage implants.  The main advantages of the DIEP are that you get a warm, squidgy "made of you" breast and that it is permanent and never needs replacing (whereas implants need replacing every 10 years or so).  In addition you don't have the risk of rejection you get with implants.  I also think the autologous recon is more comfortable long-term because you are not having to support the weight of the implant.  However, you have to trade off those advantages for the tummy scar (which is very wide) and the fact that you will almost certainly need your good breast to be reduced/lifted to match the DIEP side.  Therefore you will also end up with some scars on your unaffected breast.  The tummy scar won't be seen unless you want to wear skimpy knickers and bikini.  But you will see it obviously! There is no perfect answer but so far I am as happy as I can be given I've lost my breast. Check out how many of these ops your surgeon has done though - you want someone who really knows what they're doing for the DIEP.  Good luck. Xx ... View more

Yes it's an awful side effect! Incredibly painful.  I found it helped to start taking laxatives on the morning of chemo before I had the infusion so it was already in my system.  You could even start the night before. I used docusate sodium (cheap as chips in Boots). Being very well hydrated is also key, plus plenty of fresh fruits and veg.  Exercise also helps (walking around). At my hospital they also recommended flax seeds (linseed) as natural laxative.   ... View more

Hello lovely - how awful for you. You must be at your wits end.  Sounds like you have been from pillar to post with no one taking responsibility for sorting this out. No wonder you are angry and distressed. Where do you live? I have just had a DIEP flap done by an amazing plastic surgeon in London and I know the other surgeons at this big London hospital (NHS and private) are also really highly regarded.  If you want details, pm me as I am not allowed to write names on an open post.  Can your GP help?  Maybe they can intervene?  Or refer you to a different hospital on the basis you need to see a specialist surgeon about the wound closure (a plastic surgeon I would think)? Or at least get you some help coping with the distress such as counselling.  Keep pestering the BC nurse. Could she get you in to see the second surgeon again? Does your hospital have a complaints system?  Is there someone there you can escalate the problem to? Make yourself visible.  Start requesting copies of your notes and pathology reports (which MUST state how many lymph nodes removed if done properly because, as you say, they need this info to plan further treatment).  It may be ammunition in a complaints procedure.  What is your oncology consultant like - could s/he lean on anyone for you? Another suggestion which is a bit under the counter is to find a surgeon who does private work as well as NHS work, get a private consultation with them (a few hundred pounds) and if you like them then see whether they could get you on to their NHS list .... It is sometimes done but depends on the surgeon and your local hospital system I think.  Good luck.  Sending all my best wishes for a speedy recovery. Xx ... View more

Hi Nicki - so sorry you are having to cope with all this without the support you need.  I really hope you can find a counsellor or support group near you where you can talk about your mum.  She was obviously a very special person.  I really have found yoga helpful in coping emotionally, I think because it includes some deep relaxation and meditation.  Sending all my best wishes and I hope you find someone to give you the love you so richly deserve.  Xx ... View more

Hi Nicki.  I am sorry that you are in so much pain and distress. I had a mx two weeks ago and cannot move my arm etc.  It is v painful!  You are obviously suffering deeply from your recent bereavement and the mx is another kind of deep loss too.  Unfortunately the chemo also messes with your emotions a lot making you feel fragile.  Please could I urge you to see your GP as soon as possible and ask for an urgent referral for counselling.  It might also help to try some anti-depressants, esp. to counteract the side effects of the chemo on your mental state - worth asking your oncologist? You could also look for bereavement and cancer support groups in your area or a breast cancer support centre such as The Haven. Another way that many people find effective for reducing both physical pain and emotional distress is deep relaxation techniques such as meditation, yoga, hypnotherapy, reflexology.  Your GP or BCN may be able to get you a referral for this type of complementary therapy or there may be yoga classes available near you. I really think it might help with the IBS, back pain and fatigue.  Or you could do what I did when I started chemo, which was get two cats ....! Some days you just need to scream and cry. Hope you feel in less pain soon.  Take care.  ... View more

Hi Annie - just to reassure you I had exactly the same treatment (4x EC + weekly paclitaxel) as the poster below and also the same advice from my oncologist.  I queried why I was not being given the "F" and my Onc, who is a leading specialist at one of the largest London teaching hospitals, told me that in his view the F conferred v little benefit but had lots of side effects so not worth adding.  It is the epirubicin and cyclophosphamide that are the crucial drugs. I would also add that my experience of chemo wasn't nearly as bad as I had feared.  I hope you have a straightforward and manageable experience too.  Important with the EC to take on board lots of fluids, rest when you need to and get fresh air and gentle exercise whenever you can.  Good luck.    ... View more

Hello. I managed with scarves and hats and no wig as I don't like them.  My favourite hat came from xazha.co.uk. Lovely, gorgeous hand-made hats that look stylish and are very lightweight so can be worn indoors as well.  You might also try Deresina and Suburban Turban.  I would also recommend trying the cold cap though in case it works for you.   ... View more

Yes, they will normally offer a reduction and/or lift (mastoplexy) if required on the unaffected side to achieve a better match as part of the reconstruction process.  You need to wait for the lumpectomy breast to achieve its final shape first though. I am going to have my good breast done to match the size and shape of my mx side which has had a DIEP flap recon.  Might be worth flagging with your consultant that you might want this type of surgery early on though to see what the rules are in your area.  Good luck.   ... View more

Hello, once my lumpectomy settled down I had a wrinkly slightly discoloured patch too.  Effectively I think it is where there is no longer enough "stuffing" in the breast to pad out the skin.  The yellowness could also be bruising that is still healing.  The lumpiness is almost certainly scar tissue and massage may help under the direction of your BCN.  It takes about 6 months to see what the breast will finally look like and then there may be some further cosmetic procedures you could have to improve it such as fat transfer to pad it out a bit or even having the other side adjusted to make a better match.  Unfortunately my lumpectomy didn't work and I have now had a mx.  I really know how you feel but the good news is you had only a small area of affected tissue, that has all been successfully removed and you still have most of your breast.  From what you have said, I imagine your long-term prognosis is extremely good (although you haven't had SNB done yet - strange it wasn't done at the same time?) and if you don't need chemo you will be able to get your life back quite quickly. I say that to reassure you not to denigrate how you feel now.  It takes a long time to adjust to the shock of diagnosis and the surgery. It is in effect a bereavement. You have to let it all out and work through the upset.  Don't keep it all to yourself - find someone who will listen to you, whether a friend or professional counsellor, BCN, local support group etc.  You are obviously someone who puts others first but focus on what you need to get through this too.  Best wishes.  Xx ... View more

Annie, congratulations on getting clear margins on your lumpectomy. I know you are in pain at the moment but a successful lumpectomy is indeed something to celebrate.  The only lifestyle choices that can make a difference, according to my oncologist, are taking lots of exercise, not being overweight and not drinking too much alcohol. He said no evidence that special diets made any difference.  Chemo is not fun, but equally please be reassured that it is not that bad either.  It turned out to be far less disabling than I had feared. Make sure the oncologist knows your full medical history. Ask how the chemo will be administered and whether you could have a portacath or Picc line to stop your veins being destroyed esp as you can only have infusions into your non-affected arm. Plan lots of treats for yourself to lift your mood and don't be afraid to lean on friends and family for support. I would also strongly recommend asking for counselling and trying yoga, meditation, hypnotherapy, reflexology or similar to help you relax. Some hospitals offer free complementary therapies or you could try The Haven.  Also, importantly, it's ok to get upset so don't let anyone make you feel bad about it if you are having a down day. Best wishes.  ... View more

Yealand and Paula - wow, you are both such brave inspiring ladies.  I hope you have a better experience with chemo than you have had with surgery.  The chemo is tough of course but for many people not nearly as bad as you might fear - mainly I just felt permanently a bit jet-lagged.  Everything is more of an effort but you can still do most things.  I hope it goes well for you.  Yealand - could you have a portacath instead of a PICC line?  Although you do end up with a scar across your chest, but is convenient and put in under anaesthetic. I am having big surgery next so will think of you to give me strength. Xx  ... View more

You're definitely not going mad!  I finished chemo 6 weeks ago and I now realise it had a huge chemical effect on my mind as well as my body, making me anxious and depressed. I promise you will feel loads better emotionally a few weeks after your last infusion.  I have found yoga enormously helpful in coping with things.  Have you thought about something like hypnotherapy?  Or meditation classes?  Hang in there - it is very nearly over and then the feelings will pass.  Xx ... View more

Hi Tor - I think you should ask for a second opinion for your own peace of mind, just to check you have no other options.  What reason have you been given why you can't have an immediate reconstruction? I am not sure why it needs to "settle down". If you are having radio, then implants can be problematic but an immediate tummy flap recon may still be possible.  Have you tried discussing the advice with your breast care nurse? Unfortunately in my experience surgeons don't always have the best interpersonal skills!  You might also want to ask your GP or hospital for a referral for counselling.  Good luck.  (I am having mx and recon on Sunday.) ... View more

Ask your GP or oncologist for some Lorazepam which is commonly prescribed for anticipatory anxiety and nausea with chemo.  Alternatively or additionally you could try guided relaxation/mindfulness (available online), yoga, reflexology or even just a walk in the sunshine can help.  Chemo messes with your moods in a way you don't quite realise until you have finished.  Only one to go, well done! You have done brilliantly.   ... View more

Hello - Grade 1 with only 1 out of 25 nodes affected does on the face of it sound comparatively low risk and you would be unlikely/unlucky to have any metastasis elsewhere. I would make (demand) an urgent appt with your Onc and ask (1) is there any significant risk if you stop now and (2) are there any other chemo options such as EC (rather than FEC), lowering the dosage etc. which would make the treatment more manageable if you want to carry on. I also feel and empathise with your anxiety. The chemo messes with your emotions as well as your physical body and this type of fear and stress is what it does to you I'm afraid, along with low moods. Doing things that make you happy is key to surviving this chemical onslaught.  Focus on doing something for yourself as a treat.  It may also help to look into (ask your GP or consultant for a referral for) counselling to help cope with the feelings of guilt you seem to be experiencing in seeing your family try to cope with your illness and treatment.  I have just started the hormone therapy and I have to tell you that that also has physical and mental side effects - it seems all the treatments do.  I also long to be my old self but I am not sure whether that is possible.  On the plus side it sounds like you have an excellent prognosis and a loving family so hang in there! Important to do whatever you feel is right for you.  ... View more

Hello. I am a fellow needle-phobic. The portacath is an excellent idea as you do not have to see a hypodermic and you can easily avoid seeing the line being put in by turning your head away.  Be aware though that you can feel the needle go into the port. You will also be able to see and feel the port under your skin which I found a bit disconcerting and you will have a scar where it has been put in and taken out. However, it still sounds like the right choice for you. Sorry I cannot offer any advice re diabetes etc.  You sound like a really strong and resourceful person.  Hypnosis is a great idea. I would also recommend yoga, reflexology, a walk in the sunshine as often as you can and doing as many of your normal activities as possible for you. Make sure you give yourself plenty of treats, whether that is lunch with friends, a visit to the theatre, new shoes - whatever makes you happy.  With very best wishes.   ... View more

Good luck Helen.  So sorry you have been landed with this but you are facing it very bravely.  I am having mx and recon in about a month so would be really interested to hear how you get on and any tips you have after the operation.  Best wishes. Xx ... View more

Dannya - the MRI will normally show potentially affected areas to a greater degree than a mammo or ultrasound.  It isn't always possible to tell from the MRI whether areas that have been highlighted are cancer, DCIS or just something benign.  If there is doubt, the consultant may ask for a further ultrasound or core biopsy (a tiny tissue sample taken with a needle) of the relevant area.  I would think you will need an appointment with the consultant to discuss surgery options again once he has your MRI report.  Waiting for scan results is unbelievably stressful as we all know in this forum.  Once you have your results and further advice from the surgeon, let us know.  You might find it helpful to write down a list of questions to take with you to the consultation because the stress does have the effect of making you forget what you wanted to ask and making you feel a bit confused (in my experience anyway). Xx ... View more

Hi Dannya - if you need to have further breast tissue removed and are worried what will give you the best cosmetic outcome (quite rightly), I suggest you ask for a consultation with the plastic surgeon your breast consultant normally works with before you make a decision.  I can't promise you'll get one but you can ask! The plastics specialist can advise on types of reconstruction following a mastectomy or whether any reconstruction/improvement could be attempted following a further lumpectomy and what would look best. If you have radiotherapy that also affects your options and outcomes - again to discuss with the breast surgeon and plastic surgeon.  In particular implants can be problematic with radiotherapy, but that's not to say that's definitely not an option for you. Of course if you have a mastectomy, you may not need radiotherapy at all.  I am soon having a mx with tummy tissue (DIEP flap) used to reconstruct the breast, following a failed lumpectomy and then radio after that but I have lymph node involvement.     Please be aware that although completely painless, the MRI can be a bit distressing because you have to lie in a tube listening to what sounds like car alarms and other loud weird noises for about 30 minutes. You have to try to zone out if you can! But it does give a good picture of what is going on which is important to inform next steps.     I am sorry you have this so young.  I am 46 and like you did not think I was at risk at this age.  Since being diagnosed I have come across so many young and otherwise healthy women with this disease. I think we have to try to accept that it is random and we have just been unlucky. Easier said than done I know! But your healthy lifestyle will help with your recovery.     Best wishes xx    ... View more