New diagnosis

Hi Jen Joyce, I had my drain partly pulled out during the night after I got home, ie enough to stop working as a drain.

The breast care nurse told me that it is extremely common once the drain is removed, (whether by choice or by accident), for people to continue to produce fluid in the wound that then needs to be removed with a needle. This is called a seroma, and it does no damage (even if it gets really full) so long as you do not also get an infection). She said to think of it as a kind of big blister. The draining process is mostly pain-free because the area around the operation will generally be thoroughly numb. I found it a relief to have the pressure reduced each time, and looked forward to those appointments for that reason.

in my case, the whole mastectomy site ended up badly infected because a nurse refused to get the doctor to check it out when it first went a bit reddish, and told me to wait for  my appointment with him in 2 days time. He was cross it had been allowed to get so bad and said he would have put me straight on antibiotics and it would have been gone in no time, instead of hanging on for about 3 weeks.. I learnt later that having an infection delayed my start on Chemo, and could have prevented the chemotherapy drugs getting into the badly swollen infected area.

I am sure you know enough to push to get treatment straight away if you need it, though I am sure you will be fine.

Hi Jen huny

Doesn't sound like exactly smooth sailing for you I am sorry to hear.

When I had surgery I had a private nurse come and visit me every day at home for quite a few days after I was discharged.  Did they come and visti you in hospital to organise it so they could check your drains and dressings etc?

Must be painful having bruised ribs.  Bloody drains are a pain.

The draining of excess fluid shouldnt hurt as they can normally do it on the scar area which is numb.

Did a physiotherapist explain to you about doing exercises as soon as you can?  This helps with keeping lymphodeama away (swelling from build up of fluid - not an added complication you need if you can help it}. if not told what exercises let us know and we can help you out there.

If there is anything else you need please just let us know.

Sending great big healing hugs and wishing you smooth sailing from here on in. 

Luv always, Mich xoxoxo

 

Thanks Vicki, I am looking forward to the next meeting buy unsure of my treatment plan yet, so can't commit. Had a few return trips to hospital the last few days....I should have been kept in longer. My surgery was finished at 7pm and I was out the door at 10 the next morning. I was told I could stay but the staff all set about busily discharging me anyway. I had some bad bruising on my ribs and irritated nerves that they needed to look at the next day and the day after, my drain fell out! So leaking inside now and probably will have it drawn off with a needle ewww. Big chicken that I am. Can't say a bad word bout the staff though, they were amazing. So now just waiting.......x

Hey Michelle

You and I have to get together and talk about this diet of yours.  This body needs some help.

Luv Mich xoxooxxo

Hey Michelle, So great to read your positive blog particularly to hear about your trip to Alaska to celebrate your 30th Wedding Anniversary. I to am off on a trip to celebrate our 30th Wedding Anniversary early next year but we are headed to France. Yes, I agree about how things improve as time goes by after initial diagnosis. Hopefully yours and my stories will go towards helping Jen with her journey. Hugs, Vicki

Hi Jen, I was diagnosed with early detection DCIS in October 2012 and cutting a long story short I am doing really, really well. Ended up having two lumpectomies, a course of 30 radiotherapy treatments and am now taking Tamoxifen. I'm 56 years of age. I joined the Perth BCNA group a year or so ago and whilst I don't get to every get together it's the best thing I've done since being diagnosed as my little family is made up of men only, apart from myself, and it has helped being able to talk about things with the gals. I'm most happy to connect with you privately if you wish. I found going back and forth to the radiotherapy treatments to be a bit trying and recommend seeing if you can have someone take you to some of them both for the company and the break from driving, if it's possible. It's inevitable that people are going to say things to you that will piss you off believe me. My own mother told me that lots of women get breast cancer and they are all just fine. How ignorant is that! We have so much to deal with when it comes to a breast cancer diagnosis and not just the treatment itself. Take a big, deep breath, spleen vent when you need and just know that we are there for you, if needed! Lots of hugs, Vicki

Hi Jen,

I was in your situation 11 months ago and remember it well.

I went to my first Perth BCNA get together in Feb and the book Breast Cancer Taking Control was on display. It was available to purchase through this site and I wished I had it right from the start. So I thought I would pass this recommendation on to you. Its easy to read and very informative and has helped me understand the whole process and answer the questions you forget or don't know to ask.

Its very hard to not have your mind go racing ahead to all the possibilities but as Jessica said no decisions can be made till you get the pathology. Despite being told mine was small 110mm, when it was cut out it actually measured 200mm so the surgeon changed his tune about chemo after originally saying I may only need radiotherapy.

I ended up with 2 lumpectomies, 4 doses of chemo and 30 sessions of radiotherapy for a 2cm tumour with no spread at the age of 50.

Things do improve, time and treatments pass and I am heading to Alaska for 6 weeks to celebtate my 30th wedding anniversary and completeing my treatment. I did return to work after 6 months off and have been working for 4 months now and after a change of diet feel really well.

I will be thinking of you Monday and maybe we will meet at one of our gatherings

Michelle Walsh xx

 

Hi Jessica...never even thought about chemo before surgery. Guess I won't have too long left to find out now. Appointment is Monday. I will certainly be a full bottle of info when I hit her surgery at 9am! Still hoping for small and not much spread as I suppose we all do :) Will also give the community nurse a call afterwards as well if I need to. Thanks again, all of the members of this group have certainly made sure i feel supported and informed.

Hi Jen, I am really glad to hear you have made contact already with your breast care nurse at the hospital. They are a great resource and having a good relationship with her will be invaluable once you start the treatment processes etc. Without treading on anyone's toes, you can also have a free breast care nurse supporting you from Breast Cancer Care WA, (and this organisation can help with transport and financial stuff as well, and are on good terms with the hospitals etc).  Denise pointed out to me that the community-based nurses are a useful bridge for when you finish all your hospital-based treatment, and can feel a bit lost and unsure who to ask about the things you still need answers to.

BTW, my GP expected that it would take about 2 weeks to get an appointment with a breast surgeon once I was diagnosed, and possibly one or two weeks to then get into surgery. So although it seems like forever, and the waiting is the worst thing, 12 days from diagnosis to surgical appointment is about what she seemed to expect.  Also, when you get in, they may suggest neo-adjuvant chemotherapy to shrink the tumor before surgery, since they can see how your cancer cells respond to the treatment while there is still a tumor to monitor, and also they often do it so you can then have a lumpectomy if it turns out to be borderline in terms of size. If when you see your team you have already got it in your head that you just need to get rid of it, you may not be open to this choice, so it might be a good thing to be mentally prepared for this option and ready to ask why it would be a good choice for you,- what are the pros and cons for you.

Sometimes it means that you can take part in a Phase 3 clinical trial and get access to being treated with the newest chemotherapy drugs which have been proved to be brilliant  for whatever sort of cancer you have, but have not yet been approved for cover by PBS, so  you get it free where otherwise it would either cost heaps or not be available. Sometimes it means being put onto drugs that have only been made available for having before surgery, and if those are the best ones for you it can be an excellent option to consider. 

best wishes

Jessica

Hi Jessica, I am still waiting on delivery for the kit. I rang my breast care nurse at Charlie's today and had a chat about a few things. They are pretty good there. I did find out that even being private in a public hospital doesn't guarantee you the surgeon you want! So everybody please be aware of that. If you want to go private go private hospital too. I would never have thought to ask if it wasn't mentioned here.