General information

Having done the mastectomy, chemo & Herceptin thing plus complimentary treatments like Iscador, some general words of advice.

  1. Do your research by reading books, surfing the web & engaging in forums like this. Get all the info you can so that when you talk to your onc, you have some knowledge of your disease & can have a 2-way conversation instead of being talked at.
  2. Ask questions like what stage/grade your disease is; what other diagnostic tools are available - do you need bone scans, CAT or PET scans etc.; do you need surgery; what are the different treatment options; how responsive is your specific disease to the various therapies; what are the likely side effects; will you lose your hair (not all chemo drugs cause hair loss); does your clinic offer counselling; what are the stats & prognosis for your diagnosis (b/c is highly individual - no patient is exactly the same); see your stats in a positive light - it’s the glass half full or half empty syndrome; what anti nausea therapies are given; are anti-nausea tablets available for home use; what can you do to help yourself - diet, councilling, supplements, complimentary treatments, etc. etc.
  3. Here in South Africa there are organisations like Reach for Recovery & Bosom Buddies, which consist of breast cancer survivors, who visit patients in hospital, give advice & information, plus little temporary prosthesis & cushions to support the operated side - don’t know if you ahve these, but there is nothing like talking to survivors who have gone before you. The nurses are brilliant, but unless you ahve walked this path, you have no idea what it is like.
  4. When you are well informed, you can make reliable decisions & make no mistake, any treatment plan is your decision, not your doctor’s.
  5. Don’t assume the worst - your hair may not fall out; you may not get nausea; you will be able to cope if you have the right attitude; be positive; be grateful for every bit of good news: if there is no metastysis, that’s excellent; if the stage, grade, size, etc. is low, then the disease is mangeable; if your tumour is removed with a good, clear margin of healthy tissue, that’s good news; if you are HER2 positive, this used to mean an aggressive cancer with poor prognosis - now there is Herceptin & even newer drugs, which iare targeted therapies (monoclonal antibodies) with excellent results & as they are not chemo drugs, you don’t have serious side effects; have a positive attitude; take time to rest & smell the roses!
  6. When you go into hospital for surgery, take a Walkman with some beautiful music to listen to; take your cell ph & keep in touch with friends & family - all the support & love lifts the spirits;
  7. Get some spiritual nourishment - organised religion, books, anything to keep your spirits up.
  8. Talk about your feelings, your fears, - it helps to speak truthfully. When you feel emotional, allow the tears, don’t hold back & try to be strong when inside you feel fragile.
    Hope this helps - just ask if you need more info or help.
    All good wishes to the brave breast cancer ladies!

I noticed that you didn’t get any replies to your comprehensive advice so am bringing it to the fore!

Good luck to you too.

Margaret

Thanks Margaret for doing that and TheaJ thanks I have bookmarked your thread so I can refer to it as and when I need to - it is extremely informative and very positive - being HER2+++ I have been extremely upset and worried about some of the things I have read and whenever I see any positive or helpful comments about being HER2+ I save them to refer to when I’m having doubts and feeling down.
Very best wishes to you both
Rebz xxx

thank you Margaret for bringing this to the fore and many thanks to TheaJ for writing it.
thank you

Your advice is very valuable, I am seeing my oncologist for the first time on Wednesday and although I have lots of questions running round in my head I haven’t been able to organise them coherently. Thankyou for that.

I have joined your merry group only in the last week but the comments I read on this forum are helping.

All the best
Caroline

I have had a lumpectomy and lymph node sampling. On Thursday will be told what stage my cancer is at etc. Thanks TheaJ.

Best wishes

Ali

Good luck Ali and let us know how you got on after Thursday. I think it is good to know what the BC is so that the next treatment can start as appropriate. Action is better than waiting.

Margaret x