Newly Diagnosed 18/2/2020

LoisLois

Hi Everyone, my name is Lois and my life got bit of a shock last week when the doctor said "It is Aggressive, Invasive Breast Cancer". 
The emotions went into hyper drive and I left his room and promptly threw up in his garden. Luckily, my husband was there for that much needed clean up and cuddle. 
My "Lump" had been there for over 5 months and as I have Lupus, merely thought it was a torn chest muscle that was taking forever to heal. Unfortunately it wasn't.  Instead it is a Stage 1, Grade 3 estrogen receptor cancer (I think that is what they said!!) located in the upper quadrant of my left breast on my chest wall.  The lump is nearly 30 mm...
Yesterday, I met with the Specialist for the first time and my Breast Care Nurse - both very calm, methodical, easy to approach and allowed me for the first time in nearly 3 weeks to let my breath out and come home with a positive outlook - even though I know the months ahead will shake, rattle and roll me to exhaustion and beyond.
At the moment, the decision is to take out the lump and relevant lymph nodes then radiation therapy.  The view to full removal of both breasts will be considered once I have done healing....especially as "we" are unsure how the Lupus will react as I have been in constant flare up with a myriad of symptoms for nearly a year now.  The whole thing of rejection of breast tissue for reconstruction etc needs to be considered at length and with advisement of specialists.
I am alternating between being scared and rationally calm. The hardest bit of this news, was having to tell my children and watch the sheer horror cross their faces. That took my breath away.
So...that is me. Trying to find a sense of positivity amongst the fear and monumental freak out sessions since I was told the news.

 
 

Afraser

Dear @Lois_56

Hang on to that positivity! It won’t make you well all by itself but it can make bc and treatment a bit easier for you (and your family) to handle. As you have already found out, this stuff is best attacked bit by bit. As far as you possibly can, take it day by day. Things can change, your own views of what you want can too, so it’s good to see how each stage of treatment goes and make decisions as needed, with relevant advice. If you have to do this, Stage 1 is a reassuring start! Best wishes. 

Sister

It sends you reeling, doesn't it?  But believe me, it does get better.  Once you have a treatment plan and start down that path, the fear and shock seem to recede a bit.  My advice...take someone you trust to appointments as two pairs of ears are better than one; write down any questions you may have as you'll probably forget otherwise; stay away from Dr Google as the information there is often old or irrelevant; ...and breathe.  Also remember, if you don't want to talk to all and sundry all the time about what is going on, you don't have to.  You can update people if you want to in many different ways but it is up to you how much you talk about it.

Blondy

You'll find lots of help and support on this forum . As Alfraser says. Take it one day at a time. I was stage 1,grade 3 with a 55mm lump so I had chemo and rads. If it was smaller it would have been like you, only rads. Already you're in front, no chemo . The survival rate is huge so plan to be one of them. I certainly found the answers to a lot of my questions, and fears shared  here on this forum..I didn't know about this forum in the early days of my diagnosis when I could have benefited from the info here..Luckily you have arrived here early and everyone will help you . 

arpie

Hi @Lois_56, I am sorry to see you’ve joined the club no one really wants to join.  The diagnosis  really rocks your world and those around you.  It mucks with your brain bigtime too.

 But as the girls have said, once you’ve had your surgery, you’ll be amazed at how much better you’ll feel, just knowing it it OUT!  I was amazed at how sore I WASNT following my surgery 2 years ago - but it is very important to take the pain meds to keep it at bay.   Your pathology will determine the rest of your treatment.  I was lucky and skipped chemo too, and found the rads quite easy to cope with. 

Try and keep busy as you can as wait for your surgery.  The waiting is the pits!  Keeping your mind and body active helps.  Your family will be your biggest supporters, so lean on them. Let them do things for you and definitely have a good buddy with you in appointments. I recorded all my early ones on my phone as I found I couldn’t remember half of what was said. 

Take care ... and put up any query that you may have, as there is a wealth of support and comfort here, from those who know exactly what you are going thru.  Xx

LoisLois

Thank you for the kind words, wisdom and advice. I must admit I did come home and seek Dr. Google's info.  I roamed as many sites as possible but kept on being drawn back to this site, especially when my Breast Care Nurse said joining the forum would help me.  I knew I had to be educated as much as possible and also to answer any questions posed by my family. 

I found using social media to put one post up on facebook helped combat the need to individually tell my extended family and friends - it was reassuring indeed to have the outpouring of love and friendship - even though my initial reaction was not to tell anyone - that was a natural reaction I assume to "protect" feelings both of myself and others. 

I have been told that Radiation can leave you exhausted  and the skin becomes highly sensitive for weeks after the sessions are completed? Would soft flowy clothing (cottons) be preferable? 

Thank you once again (big Hugs) Lois

Blondy

@Lois_56. Everyone reacts in a different way. I also think the mindset goes a long way into how it affects you. On a positive note, I had my sessions first thing in the morning and then went to work. I did get some breakage of skin under my breast at the very end. The centre nurse dressed it  then a nurse came to my home as my sessions ended and we ended up after the first visit with the nurse showing my husband how to dress the very small wound as I didn't want her coming to me every day when I'm sure there were far more people needing her. In time it healed and was tender in that area only but I used to wear a pad between it and my bra. My booby was very red but no problem  I had moo goo cream which I slathered on many times a day..i found the cream they gave me at rads was thick and harder to apply  Moo goo do an excellent oncology pack  It contains a lot of things plus some freebies and works out much cheaper than buying them individually. So if anyone wants to buy you a pressie ....  The redness gradually receded and as I'm not a nude model it didn't affect my work. Lol. There are so many things that can go wrong, or side effects, etc and you may only have a few of them, certainly not all but it's good to be educated and to be aware but don't for one second think you'll get them all. This is the time to decide how you are going to get through this. That's where the mindset comes in. Glass half full, or half empty. Being stage 1 your prognosis is a very good one. Already you are off to a positive start. Keep it up dear girl and kick its ass and don't ever let it rob you of your happiness  or anything else. Give it zero power,  by being positive. Put your big girl pants on and show em girl .You got this.. Personally all my friends and family were my Team Unicorn. Right after surgery I wore my Unicorn headband in hospital  2 1/2 years later,  last week I still am getting Unicorn presents .. Maybe get yourself a positive team together. I also had a Ra Ra Girl who messaged me forever with happy thoughts. 

arpie

Terrific that your BC nurse put you onto the forum!  Yep, Try not to overthink any of your treatment ... specially the rads @Lois_56.  Some get tired, some don’t.  I didn’t.  many, like @blondy, worked thru it.  The actual treatment is over in minutes .... getting you into the exact position day after day takes longer!   

Yes, the skin gets hot and pink/red, it can dry out or ‘break down’ towards the end, so it is very important to lather up with the lotions 2-3 times a day. If you notice any skin damage, make sure you advise them immediately.   The ‘hot boob’ continues for some time after treatment stops and you need to be careful not to wear thin clothes that may allow sunburn ... but it generally isn’t too debilitating.

Loose softer clothing that is easier to get out of is the way to go, as they’ll give you a robe to change into before going into the treatment area. I just wore pants and a top, so just removed the top..... You’ll soon get used to stripping off and allowing people to check out your boobies!  LOL

Strangely enough, I became rather emotional on my last day, as I’d become rather reliant on this team of people, seeing them every week day for 4 weeks ... I was a blubbering mess on my final day!  Weird! It caught me by surprise!

There are some ‘pamper packages’ that are available on the coast in Qld, but closer to the Gold Coast and Sunshine Coast, i think.

The Otis Foundation has some wonderful holiday destinations available to BC patients, from families who have holiday houses that aren’t used a lot of the year .... after you’ve finished your rads, you can apply for a holiday with your family & kids!  Most states have at least 1 house available ... but you can apply for interstate as well
https://www.otisfoundation.org.au/directory

All the best and take care xx

Sister

I would suggest asking you radiation clinic about Mepitel film (or similar) - some places have it, some don't, some don't offer it unless asked.  I used it during the week and Moo Goo on the weekend.  I ended up with a red patch on the side about 3 weeks after the treatment ended - went braless most of the time and just wore a soft Ah Bra knockoff (check Kmart) with a bit of soft padding on the area when I needed to.

Caz1

Hi @Lois_56, sorry you had to join us!

I agree that the worst part is telling your kids, it does take your breath away. Mine are young adults too.  Their whole innocent world disappears.

BUT. I choose  to just laugh at everything, I started with chemo, which certainly provided some weird symptoms to laugh at. Sometimes I think they look at me and think who is this madwoman living in our house?! We all have learnt to laugh at this, and this has got us through it, for me it’s the only way to keep going, one day at time. 

I’m currently at week 3 of 5 weeks of radiotherapy. It’s quite doable. My boob is a little red but not too bad yet.  Get yourself a big tube of Moogoo udder cream. Use it 3 to 4 times a day. You got this girlfriend xx

Blondy

Caz1 its great to hear of someone who also can laugh at it all. We must start a weaird club. Laughter is the best medicine and I do believe we can laugh our way well. On the weekends when I have not worn any make up for 2 or 3 days I am the vision of what I looked like on day 5 after chemo. Hardly recognizable. I do make jokes about my boob especially with 3 freinds who copied me 10 months apart.  I don't  have any humour about anyone outside of this club making jokes but amongst us, go for it. Id have to say my funnist memory is on the day of my surgery. My husbands feeding me water, theres a fluid drip in my hand im not taking into account and then....I need to spend a penny. Call the nurse, who has to get someone eles who has to get someone else to help me and my 2 drain bottles. I still have my panties on which i wore to surgery  Leopard skin of course. So here I am, taking my first steps after the first surgery in my life. Make it into the loo, holding on to my drains and no free hand to pull my pants down and I am fair busting big time. Whilst manoeuvring the removal of pants, the excitement of the nearness of the loo, its been 10 hours since I last went got all too much and i joined the stress incontinence, no Id gone pass stress to ecstacy and wet myself. Because of the cannula and lack of desire to wash them,I saw a placcy bag, put them in and gave them to the man of the house to take home and wash. 2 days later i asked him if hed washed them and he looked surprised (duh) and said they were still in the car. I said the car must smell like a dead body or you've lost your sense of smell. No worries, I  arrived home the next day to find them over the shower door. From that moment on I decided not to sweat the small stuff, and over the coming months closed my eyes to things like, asking for watermelon when I couldn't  even lift my head and I get at least half a melon cut in massive chunks and questioned when I didn't  eat it all. Yeah, you have to laugh.

Beryl C.

Blondy - of course a girl wears her leopard skins for surgery! Thanks for the delicious mental imagery and I will chuckle all day about the watermelon incident.

LoisLois

Oh my gosh - THANK YOU for the valuable information. Oh Blondy, I burst into hysterical laughter at the mental imagery - relief so close yet so far!!! 

I have some good news today - I have my surgery appointment - Wednesday 25th March.  Another step in the right direction. yippee.

Have an amazing weekend, keep the spirit glowing and I send you all big hugs xxx  Thank you for the fellowship.

Blondy

Good news Lois_56. Don't over think any of it The sooner you start the sooner you finish. Actually the 25th would have been my dads bday. It's also known as Lady Day. 

Caz1

@Blondy you are a deadset legend and inspiration! I’m gonna buy myself some fancy undies for my surgery which is suddenly looming! Classic husband story with the stinky pants too...

I just reckon if I didn’t poke fun at all of this, I would get sad and it would drag me down. I’ve got to stay on top of it
Love to play the ‘cancer card’ to get my way as well haha

Blondy

All the best, Caz1 with your surgery, and finding a sexy pair of undies.. Crotchless might be the go. Do whatever to stay on top. It can be hard at times but the longer you're there the easier it gets.