breast cancer roller coaster

Cassina

First visit to Breast Cancer Clinic, after small red spot on nipple. Surgeon no 100% not cancer, we do not know what that is, never seen anything like it before? Come back in 6 weeks and if it is still there we will do a biopsy.Guess what? you have cancer, told by the brand new intern on his first day, after a 5 hour wait ......reminder him I was a nurse and on staff, so he said I will call the Surgeon. Surgery done, and oh we found another breast cancer, the aggressive one, so need to go back to surgery again this week. More 5 hour waits, and we got it all, no need for chemo, too small, radio now, then keep an eye on it! All good, see the Oncologist anyway just to get his opinion.... no need for chemo, may not help, all good, comes back 5 mins later, well lets try small dose to stop any cancer returning! You will not loose your hair and you are better to keep working! 
 Monday working feeling great after first dose, no issues, Today Friday bald, in pain and every symptom waiting to go for weekly chemo, too sick to work, everyone knows I have cancer and chemo, yes I will get through this, no I am not angry, but once the world  knows  I find nurses praying for me, everyone has advice re diet, work, hair, well meaning but never thought the journey would be so up and down and never though hair loss would be so depressing and signalling to the world You have cancer, you are now a patient and we feel sorry for you! I can cope with the long term outcome but wonder if anyone else has had a confusing journey?

Butterfly 40

@not keen on chemo I am really sorry to hear your confusing journey! We are riding on a very bumpy roller coaster.  

I was diagnosed late last year from the day I felt a lump to now, it's been almost 5 months. I am still on the roller coaster and waiting for the big scary turn,  hopefully after that I will be heading towards the end of the journey. I had lumpectomy removed 2 lumps soon I was diagnosed late last year. I was offered radiotherapy or single mastectomy based on my post op histology reports. I struggled to make decisions. I was referred to genetic testing and MRI as I was worried about my opposite breast. MRI found another lesion in my opposite breast and radiologists commented my breast were"nightmares ". I am booked for double mastectomy next Friday. I am a nurse as well. It's certainly feeling weird being a patient now. I had nipple delay procedure done yesterday. I had the nurse who looked after me when I had lumpectomy. She said she will request to look after me next Friday after my double mastectomy. A very kind nurse! 

All the best with your journey! Gentle hugs for you! xxx 

melclarity

@not keen on chemo Welcome!! I think there are plenty of people here with plenty of confusing stories yes!! My first diagnosis was 2011 and 2nd in 2015. I think ive seen it all in that time. One thing I learned was having had lumpectomies, biopsies, sentinel node biopsies, radiation and chemo is...I wouldnt do a biopsy again as every time I had one they were benign! so pain and suffering for nothing. Lumpectomy was the only way of getting definitive pathology for diagnosis. Its so hard then too when you get conflicting opinions on treatment, so its important to deal with just the Oncologist. I find it odd about the Chemo, he said you wont lose your hair? and you could work? what is your Regime? If you did just Taxol theres a good chance you may not lose your hair however on FEC or AC you absolutely would. I too found it confronting that part but had a great wig that nobody could tell. I was very ill on Chemo and could not work. Im now 16 months post and still suffering side effects, but I have a full head of hair and on my way LOL. I wore wigs for that reason, I so didnt want the attention (pity) from people, I just wanted to deal with it personally. hard to hide when I lost eyelashes and all hair all over my body, I really did look like that typical cancer patient and HATED it! I would ask a heap of questions so you can be ahead of what is going on and going to happen so that you will be able to cope a little better. 

People think they are helping and being well meaning, but they really aren't nobody gets it like we all do because we're all going through it. Its an amazing supportive community and a wealth of experience and knowledge and love!

Keep talking, and sing out if there's anything that doesn't make sense that we can help with. Hugs Melinda xo

iserbrown

Hi!  Sorry you've had to join us but we are all in this together and between us we will help you through the doldrums of it all.  I can only imagine having a nursing background sets your mind off racing, information overload! 

Hopefully you've been through the formalities on this site and ordered your My Journey Kit and have a breast care nurse as your go to.  There are other resources that are there for you to take advantage of, Look Good, Feel Better https://lgfb.org.au/ and the Otis Foundation.  There are lots of posts and resources within this site that you will find helpful.

As you would be well aware through nursing others we are all different in the way our bodies react to treatment.  Wishing you well with your treatment and surgeries and hopefully it is not too bad!

Take care

Zoffiel

@not keen on chemo. Half the problem is not being able to effectively hide what is going on. This disease is no more deadly than heart disease, but we can't disguise it. Which somehow makes us public property. Very annoying.

fairydust

@ not keen on chemo what a rollercoaster. One day you are happily working the next day you have cancer. Your fine and then you are not. I think how are you supposed to trust your body ever again. No obvious symptons nothing. I tried to tell as few people as possible I had cancer. Suddenly I am treated differently.  Same no hair sick limited in activity. Guess what a year on have hair, no cancer in my body and activity levels rising. It will get better.

Brenda5

I don't know if its every really cut (excuse the pun) and dry. I had a breast biopsy but the doctor said the lymph node was so small it wasn't worth doing a biopsy on that so left it. I had a mastectomy (my choice) which turned out a good thing as the other side of the breast had started some odd activity as well and ONE sentinel node out. Guess what, sentinel node was positive so back in to surgery to have ALL nodes out and every one was negative. Sheesh! I am still pissed off he didn't take a few nodes rather than one as if the others were negative I wouldn't have probably needed a second surgery. I probably would not have lymphedema in my arm. I wouldn't have two scars which seem to trap stuff between them so I am always doing massage to get it to go away. Since the one node was positive, chemo was sort of a given then. It wasn't easy but I got through it. I focus on the alternative, I am not dead from breast cancer and that's a very good thing.

Cassina

not keen on chemo

Cassina

no I agree, it is not cut and dry, and even the experts are not always sure, just wish they would say "we so not know,"rather than definetly it is not!" we are in their hands, and hopefully they are researching this Cancer each day! Thanks for the support it has inspired me to continue

primek

Yes I had the peope praying for me and I thought well what the heck....if it makes them feel better and it helps all giid.

I didn't work as wasn't well enough. The chemo unit was just down the corridor of my work place. I always felt out on public display and took a long time to dress and do make up so didn't look sick (then got annoyed at people telling me how well I looked ...great makeup) 

My diagnosis was cut and dry. Sudden fixed lump. ..bc shape, positive biopsy. Didn't make it any easier though.

I really thought I'd wear a wig but hated mine. I developed a scarf and hat obsession.

I had a new wardrobe as I got really fat during treatment. ..another reason I looked so well. 

This site was a great spot to vent and get support. I foubd it gave me a circke if friends that really just got it.

Hope treatment goes well. Kath x

Cassina

Thanks, and yes, it makes them feel better, however it frightens me, they think you must be about to pass away and it stops you being hopeful and positive! Which so far this site has helped me feel. I have also developed a scarf obsession and have gone for bright colours and feel good! yes getting fat with chemo and each week different side effects! Its a lottery! ( also I no longer look in the mirror, what I see frightens me! ( think I am in denial) 

socoda

Hi @Cassina, I won't ever forget what was said to me by the surgeon at breast screen when I was called back for biopsies, ultrasound and mammogram. We all already knew I had Bc but the surgeon told me I was going to be OK and that bc is still perceived as a death sentence by the public but that there is a whole myriad of survivors in the community that just go on with their lives and no one (except loved ones, friends and associates ) know that they have experienced Bc.  I am so happy that I've been diagnosed in a time where not only are treatments so variable but also that this network is here and available and filled with so many who are living beautifully fulfilling lives and are achieving milestones that dispel beliefs that you become the walking dead once diagnosed. A huge hug to you and don't let others even try to dampen your spirit.  You've got this and we're here to support you. Xx Cath 

Brenda5

Doesn't mean we're going to die from breast cancer, tell your friends, it just means we're high maintenance. Prior to bc I would see the Dr once a year and the receptionist after many annual visits joked I was in the special frequent flyer list lol. Now I have to be a bit more attentive and see the Dr a lot more often. Just a cold or flu can for me become quite serious and I take a couple of vitamin C tabs every day to help me gain some resistance to illness. There are all sorts of side effects we have to be attentive to but we womble on ok and none of us are ready to throw in the towel on life just yet.

Cassina

No certainly not planning to die anytime soon! and yes breast cancer seems to get the most attention and funding, which is good for us, not so good for other types of cancer

Cosette

Brenda5 said:

Doesn't mean we're going to die from breast cancer, tell your friends, it just means we're high maintenance.

That's a project for someone.

iserbrown

Good one!  My GP refers to be as "High Maintenance, slight pause, medically"