Terrified newbie

Hello. I can sympathise with the worrying.  Click my name to read my profile as it saves me typing with one hand! The waiting game is hard going and I think most if not all of us have been there and done that. Maybe write your worries down in a notebook just for you so they are out your head. Try to keep yourself occupied with little tasks. Everyone reacts differently and crying is a good release. I cried lots and still have wobble days. Its a very emotional time (not helped by now stopping the pill so hormones are everywhere too). Have a read of some other threads too as there is lots of good advice around and i do recommend the Macmillan and Breast Cancer websites but don't recommend google!. Once you have your results then a plan maybe clearer. I have struggled with the not knowing which makes planning very hard. I'm waiting for my oncology tel call next week re my radiotherapy. its been 5 weeks since surgery. Cancer is very treatable these days, surgery is more focussed and drugs are better. It can be hard not to think the worst (I know I have). Are there any things you have as hobbies to keep you busy? Don't forget your support system - family, breast care nurse or even the helpline (I've not tried that). Keep going. one day at a time. sending hugs x

Hi Tired Minion,

Thanks so much for the message and the hugs. Writing those worries down is a great idea - you ask about hobbies and writing is one of them so... Also good excuse for buying a new notebook! I am being kept busy by work - least of all organising ways to keep the business I have whilst I can't work. My clients have been great and very supportive so far. I do work from home so that helps.

Like you and the pill, I'm sure my emotions are also not helped by the fact that I was on HRT before this and that was a sudden withdrawal as soon as the lump was biopsied.

I'm getting lots of support from family and friends although managing their shock and fear is also a challenge. Did you find that? Weirdly I'm finding myself not wanting to bother my BC nurse as I'm thinking she's got lots of patients to care for - then I remember I'm one of them. I think I'm still coming to terms with being a member of this club.

Will take a look at your profile now - sending you lots of hugs and strength too x

I was on HRT as well and stopped it immediately I knew there was a possible cancer showing at the mammogram stage. I was quite emotional on reading your history, as it changed, and feel for you. I found I was not told anything during the investigations and everything was downplayed - eg there are some precancerous cells......which doesn't sound very alarming at all.....I have found the BC Nurses brilliant, but because there was so much information fired at me in a short space of time by the Surgeon I could not understand all the options offered to me and needed clarification. Luckily there are a number of them and you should not feel you are bothering them. Mine all want to help and see it as their role. I was even given a compression bra free of charge to wear immediately after my op and love it. I would never have managed to know what to choose otherwise and probably never got round to it, or it wouldn't have fitted. I try to do everything they suggest. Seems to have worked well. My Breast Surgeon sees you and then gets the BC Nurse who has been sitting in in the appt to sit with you in a separate room and talk, covering what you may have not taken in. I consider myself quite intelligent, but believe me, when you're worried and scared and all this is new and you thought you were healthy it all comes as a huge shock to the system and no-one remembers what exactly has been said. The Breast Cancer Nurses have access to your records so can talk to you about your particular problems in an empathetic way. They also get to check wounds and dressings where I live so get to know you pretty well.

Hello Discombobulated

Sorry to hear that you have breast cancer.  I have had a similar journey to you.  I was told two years ago that my lump was "nothing to be concerned about".  I noticed during lockdown that it was increasing in size.  I waited until I had received both doses of vaccine and then got an appointment with the doctor.  From there things rushed ahead. A grade 2,31mm tumour, ER positive but HER2 negative. I had surgery on 21st June.  I had a lumpectomy and an auxiliary node clearance as two of my nodes that were examined were positive.  Unfortunately some cancer cells remain at the margin so I have to have another op on the 26th July.  Like you I have been knocked for six with this diagnoses and what has happened since.  I am trying to be positive about things, such as considering having to have a second operation as the surgeon being thorough, auxiliary node removal meaning that I will not have to be concerned about them anymore.  The waiting is the worst part isn't it?  A friend sent me a book to read called Mindfulness: a practical guide to fining peace in a frantic world by Mark Williams and Danny Penman.  I have found this very helpful if enabling me not to think negatively.  Both of us are fortunate that treatment for breast cancer has improved so much and survival rates are promising.  I hope that your family and friends will continue to support you and surround you with their love.  I do not know what my treatment programme will be as my surgeon said that we need to do one thing at a time.  I understand this approach but it is difficult not to know what the future holds, so I am trying to enjoy each day and take it as it comes. May I wish you success with your treatment and I agree with the advice to try to keep busy.  When negative thoughts come push them away if you can as they do not help.  Take care.

Hi Thirds,

Thank you so much for replying - our paths do seem very similar.

I've had a complete meltdown this morning as I was given the choice of axillary clearance or radiotherapy on the nodes and now I'm questioning whether I've made the right decision to have surgery - all with my monkey brain telling me that I 'm going to die pretty soon... exhausting. I've posted in Diagnosis and Treatment asking for other peoples experiences with that decision.

My BC nurse is also answering my questions and fears for me now via email. It's all such a whirlwind isn't it? One month between me finding the lump and the lumpectomy - and now a week later - less positive news. Although I'm massively grateful and impressed how quickly it is happening.

On the whole I'm trying really hard to be positive but it just seems that, for me, pushing the negative thoughts away just makes them build up and I have a meltdown. My poor hubby! I do feel better after though and voicing those fears helps. I will def check out that book - thanks for recommending.

You're quite right we are so lucky that treatment and survival has improved. I really wish you well with your next surgery and continued treatment and all the strength in the world to stay positive too. It sounds like you're succeeding in that. Do stay in touch if you'd like to compare notes along the way. Love and virtual hugs to you. x

Hi there,

Thanks so much for replying. I completely relate to what you say about not being able to remember everything you're told when you've just been given what feels like the worst news. And not being able to understand the options given - although I'm glad we are given some control it is hard.

I had a major meltdown early this morning over my decision to go for another surgery so soon after the first and how that will affect me. But I've contacted my BC nurse who is addressing all my fears and questions for me now. It felt better to take control and write down all my points - navigating this honestly feels weirdly like a work project sometimes!

Wishing you well in your continued treatment.

Take Care

x

Be kind to yourself.  You have been given devastating news and things are rushing ahead, so a meltdown is fine in the circumstances. I am sure that your husband will be accepting.  It must be tough for him too. My surgeon is pro surgery for auxiliary nodes, others may have a different idea.  When I asked him why he had removed them all he said, you won't have to worry about them again.  It is probably the same if you have radiotherapy.  Please don't think that you are going to die soon.  I know that is easy to say but the survival rates are so much higher now.  My BC nurse has been a disappointment.  She does not reply to texts or phone calls and sent me to the wrong hospital for my CT scan.  Thank goodness the staff there were kind enough to do it anyway.  I am glad that your person is responsive.  It does help to get information doesn't it?  Yes let's keep in touch and all the best for whatever decision you make.  Sending you a virtual hug x

If you weren't having a meltdown over all this, you wouldn't be human......

Hi ' It's normal to think that breast cancer might be the end for you but the reality is that it's unlikely to be.  Treatment has come a long way over the years and the success rate is very high.  I've read lots of posts on here where ladies have had the cancer found in lymph nodes and they got through the treatment and are absolutely fine.

I think if I was in your shoes I would probably opt to have the full clearance as that somehow feels safer but best to discuss this with your surgeon and BC.  I always ask them what would you do if this was you or your wife?

Have to dash now but please don't despair and think this is the end because it isn't. x

I asked my Breast Cancer Surgeon this very same question in relation to whether to go flat, have DIEP or implant. She made me choose because for her patients it has to be their decision only. What I did, after being extremely upset when she told me she was going to do a mastectomy, was to speak to other ladies who had had these operations, to see what they thought and how they coped.

I'm afraid I can't make the decision for Discomboobulated, but I had 5 nodes removed, all clear, and all clear on biopsy. Radiotherapy still suggested however.