Newly diagnose, introcuding myself.

notinuse

Hey,

So after reading lots on this website I've finally plucked up the courage to introduce myself and set up a profile, I hope I've done it right?

I'm Lottie aka Charlotte, married and live in the UK, I am 33.5 years old with no BC history in my family. I simply had a sharp pain in my left breast and felt a lump which prompted me to get it checked. I am a Watercolour Artist full time.

I have ILC, with a tumour 8.7cm long. Nodes are clear and rest of body clear of cancer. I am having 4 x EC first and then 4 x Docetaxol. Although I may ask for the 12 x weekly Taxol as I'm worried about the risk of permenent Alopeica with Docetaxol.

Surgery will be next summer...single Masectomy, although I will ask for a double mastectomy. Ovarian removal or suppression and then hormone treatment. I forgot which but he said it won't be Tamoxifen.

I also suffer with PCOS and severe Auto Immune Anaphylaxis and Asthma so there's lots of complications with me recievingChemo. I am Privately insured however Chemo has begun on the NHS due to them having Intensive Care Units there. So far no anaphylaxis, I've only had one EC so far, next session is Wednesday. I am also have Neulasta. No severe side effects with EC so far. Just sickness, constipation, heartburn and acid reflux in the beginning. Lasted 4 days.

I have no children. I shaved my hair off 4 weeks ago, beat Chemo to it. I currently still have body hair and facial hair.

I went into some very dark places mentally at first but I've had a good run now for around 4 weeks. I am on sleep meds which are working, and they're safe too. I have 2 wigs, a blue one and a blonde one. I am blogging about my journey at

thecolourofclouds dot co dot uk

I think I have mentioned everything. X

Georgia1

Hi Lottie from the US of A! Thanks for writing in, and I hope you find lots of support here -- while I had a lumpectomy for a smaller tumor, I had the added fun of a mixed IDC/ILC diagnosis so had to get a second opinion on everything. It all came out of the blue, and the women here have been so very, very helpful.

Hope you enjoy a fun Christmas and I am in awe of the two wigs and a blog! Taking charge of the flipping thing is definitely the right approach.

pupmom

I think you mean newly diagnoseD. I always try to check my posts. Best wishes, regardless.

HoneyBadger47

Hi Pomegranate,

Welcome! Sorry you have to be here but you found a great resource. The wigs sound great. Let your inner artist shine!

Don’t worry about any typos. I don’t proof mine. I’m on a mobile and half the time I’m not wearing glasses. I knew exactly what you meant!

Take care. I agree with Georgia, you are taking your power back!

pupmom

Typos can prevent understanding. I also don't get:

"introcuding."

Georgia1

LOL. It is "introducing." Hope everyone has a great holiday.

HoneyBadger47

Seriously?

HoneyBadger47

I could tell you meant “misunderstanding” just fine

pupmom

Actually I meant just what I typed: UNDERSTANDING.

HoneyBadger47

Got it. You are right and that is all that matters.

Bless your heart.

Merry Christmas

pupmom

Merry Christmas!

notinuse

Sorry my dyslexia got in the way despite proof reading, that does not always work for dyslexics. Have I joined an English Grammar forum instead?

Georgia1

Apologies dear. You are very welcome here and I will check out your blog tomorrow. Happy holidays.

notinuse

Georgia1 - Thank you very much. I am glad you have found this place helpful for you. I hope you are on the road to recovery x

HoneyBadger47 - Thank you too my lovely. I hope you are doing ok x

Moderators

We welcome you pomegranatapeaches to our community, and happy you have found us. You are going through so much, and at such a young age. We are sending you gentle hugs

notinuse

Thank you Moderators for your message. Yes a young age, I admit I have felt naive, scared and "why me?" but I am over that now, more or less. Thank you again.

Hariry

Brave gal, gentle hugs...

Anonymous

Hello Pomegranate,

I too watercolor, and it has helped me get my mind off troubling thoughts for years. I'm nowhere near professional, but I enjoy it and the ability to let art simply pull me into a zen kind of place for a bit and give my emotions and mind a rest.

You have a "good" dx compared to many--take heart in that (no + nodes). So many of us with ILC have + nodes because this type hides from scans for so long.

Let us know how it goes. There are also chemo groups for certain types of chemo on the "chemo board" here, and they were helpful for me when I was getting treatment. I think it's good you are going to ask for a BMX, because ILC has a higher tendency to be multi-focal and involve both breasts. At least that's why I chose a BMX, plus I had dense breast tissue which further hid the problem from scans.

Anyway, welcome!

Hugs from Claire in Arizona

Wendiwithani

Welcome Pomegranate. I am quite certain you will find lots of love and support here. I know I have throughout my journey. Hugs and love your way, sister!

P.S. Please ignore any negative Nellies! That is NOT what we are about here.

HoneyBadger47

Pomegranate,

I am doing ok. As you already know, lots of ups and downs on the wild ride of cancer.

I took a quick peek at your blog. You have a great writing style.

Your artwork is beautiful. You are so talented. I LOVE the Bumble Bee with the pastel details. Makes me feel happy.

Can't wait to check out the rest of it!

I hope your chemo is going well with minimal side effects. Mine was not as horrific as I imagined it would be. Hang in there.

EastcoastTS

Welcome to a very supportive community (although I'm sorry you are here). Ask any and all questions! Or come here to vent. It's often easier, I have found, to talk to someone who knows what it feels like to have BC.

I'll check out your blog, too!

Lucy55

Pomegranate..

Sorry you've had to join us ..but you're very welcome..I'm definitely going to have a look at your blog now !!!

Beatmon

Dear Pom, welcome to our group. I must tell you I am jealous of your artistic talent. I wish that I had some ability to make beautiful things. B

Lucy55

Pom..just been reading your blog ..you write beautifully and I love your artwork !!! 😃

notinuse

Thank you all for your comments regarding my blog. I'll be honest it's quite ruthless at times but I wear my heart of my sleeve. And thank you for the more welcome messages. Art definitely does help me out greatly. And yes, I am clinging on to the fact my nodes are clear and the rest of my body is too. We have to find the positives and then focus on them. You all are doing so well. x

Amelia01

Hi Lottie,

If they are doing a mastectomy why are you doing the chemo prior? Can't they just get the surgery done and over with and then evaluate what therapies to do (especially as you say the chemo might interfere with other issues you have)?

I had a large over 7cm ILC and the first step was to rip it on out. Of course now I am battling with doing chemo or not ....

Best to you!

notinuse

Hi Amelia01,

They are doing it before because of the size, to ensure that it stays contained and mops up any micro cells that wouldn't be picked up on any scan etc. Also, I will be completely honest, in the UK we have the National Health Service and then a Private healthcare service. The latter costs more and means the patient either pays directly for the treatment or they're insured and this covers most of the costs. I am Privately insured and I know many cases similar to mine on the NHS here and they go straight into surgery and no chemo whatsoever. It annoys me as I feel people should be given a choice. My Oncologist said money is no issue here and we will throw everything at you. Which is concerning in itself if that makes sense.

I am happy to have chemo first to be honest, then surgery. And knowing how my brain worries a lot, I wouldn't not want to have chemo and be wondering what if? Does that make sense?

It is totally your call which you decide, but the chemo will get everything and anything, so learn to love the chemo and view it a cure.

notinuse

P.S. So far, i have had 2 Chemo round and no Anaphylaxis. Wahoo

1ofHissheep

Hi,

I'm just joining as I was newly diagnosed with ILC. I am trying to learn about it and decide the right choices for me. I have a 1.6 cm mass in my R breast. Am leaning toward lumpectomy and radiation, realizing that hormonal therapy and chemo therapy may be in my future, but it sounds like those are likely in my future (at least the hormonal therapy) even if I have a mastectomy. I am trying to learn if there is any compelling reason for me to choose a bilateral mastectomy or even a unilateral mastectomy over a lumpectomy and what I am reading is that mortality rate is the same either way. This leads me to believe that the right choice for me is a lumpectomy. I'm wondering if the follow ups then are MRI rather than mammogram and U/S since apparently this is harder to catch that way. My lump was found on a routine mammogram, thankfully.

Patience is my bigger struggle today. I was diagnosed Dec 15 and it seems with the Christmas and New Years Holiday in the midst of appointments that information and appointments leading to decisions are slow coming. I also am realizing that I am my own best advocate because no one seems as eager to move toward the next step as I am.

I'm going by 1ofHissheep but my real name is Jodie. This will surely be a faith journey (already is)... today is not one of my more stellar days.

beach2beach

Hi Pom:

Sorry you find yourself here, but glad you found us. You certainly have a lot on your plate with the additional Asthma and PCOS. Glad you are tolerating the chemo and hopefully by the time you are ready for surgery it will show complete response and be next to nothing or gone.

Hi 1ofHis,

Sorry you also find yourself here but glad you found us. Choosing one or the other is a very personal decision. Im an anxious person and the thought of doing more surveillance after a lumpectomy I just could not deal with that, plus I had such small boobs to begin with that taking a chunk out of my right and missing some tissue in my left from biopsies, Id have nothing left so I opted for a double nipple sparing mastectomy and did direct implants No regrets on my part.

You do what you feel is best for you do, plain and simple.

Moderators

Hi, Jodie! We want to welcome you to our community here at BCO. We're sorry you find yourself here, but we hope this community can be a source of support as you begin down this road. It's a roller coaster of emotions, but just know that you're not alone.

The Mods