No luck but bad luck

[Jennifer4284]

Did I really get diagnosed with breast cancer, while already dealing with having bechets. I did. I'm in shock. Just complete shock!

[sian35]

So very, very sorry to hear that, Jennifer. Do you have a good team of doctors you can trust? I do hope the drs can help you. Thinking of you

Kindest regards,

Sian

[Jazzy21]

I know how you feel. I was the same 3 years ago. I hope you are getting the help you need, Any questions just ask me.

[Jennifer4284 in reply to Jazzy21]

How long did you have treatments for? I know every cancer is different. Yes I'm panicking. I know it's invasive Ductal Carcinoma. I do not know the grade or the stage yet unfortunately. I hopefully will find out that news today. So I can really start getting an understanding of what I'm dealing with. You go from finding a lump to 5 mass's one of which is in your lymph nodes! I'm sick to my stomach with anxiety!

[xandii]

Hi Jennifer Hun,

Although I am feeling totally crap this morning yet again, ( having TB drugs to get to get the latent Tb out of my system so I can hopefully get to have Infliximab eventually, but that's another story altogether, lol) and I read your post on my email. I felt that I really had to stop feeling so sorry for myself and touch base with you straight away.

I know exactly how you feel having had Cervix and Uterus, surface and glandular CIN 4 land on me like a ton of bricks from a great height !

That numbing disbelief that this is happening to you just leaves you totally numb and all seems so unreal somehow doesn't it ? Unfortunately it is real and the realities of the whole situation will definitely sink in later as you would expect it to.

Now then .... the first thing I want to say to you is that a diagnosis of cancer these days does not mean you are going to die. I know that s the first thing that goes through your head but it isn't the death sentence it was even twenty years ago now. Okay ? You are not going anywhere !!

The next thing I need to tell you is that you have to do whatever you feel YOU need to do to get through this. Of course everyone else in the family is impacted by this news and will have their own demons to face in order to get through all this but you MUST put yourself first for once. Have discussions with them all about how you feel but ask for their support in helping you to do what you need to do to get through the next few months until you start to feel better again okay ? So many people put the needs of their friends and family ahead of their own needs and at a time like this you need to be the focus of the help for once okay ? Mwah !

I am so glad you came forward and shared this news with us and even though it immediately brought back all those insecurities and feelings I went through myself, I am so pleased to tell you that I made a full recovery and now have no problems what so ever with cancer. That was thirty years ago when treatment wasn't so good and I made it out in one piece minus a few bits and pieces that I probably didn't need anyway. Lol.

We will all be thinking of you and saying a little prayer for you everyday until you are better. It is very important for you to talk to someone who fully understands your particular condition and you need to find someone who is qualified to do this with you asap locally. Don't be a hero, ...... cry, scream, sing and laugh whenever you want to, It really does make a difference!

Take care Hun and big soft hugs for me okay ? Mwah !💋

Please keep us all posted,

X xx

[Jennifer4284 in reply to xandii]

All I know from the pre lim results is that it's Invasive Ductal Carcinoma. I don't know the stage or grade yet. Last night was a terrible rough evening and night. I've noticed it's all coming in waves, and it's all happening so fast.

[Jennifer4284]

My dr's are really question if it's the Enbrel 50 mgs sure click shot I was giving myself once a week for my bechets. Ugh!!! One medication to make you sicker... DO NOT USE ENBREL!

[xandii in reply to Jennifer4284]

I really do understand where you are at hun. Things seem to just be happening around you and so fast that you can't keep up with it all. Meanwhile you are left scratching your head and trying to put it all in perspective and all you want to say is "Slow Down .... I need to think this all through first !"

It will get easier to handle .... I promise !

When actual treatment starts and you begin to realise that the nightmare will, in fact end eventually you will be able to get more of a hold in the whole situation.

Just try not to beat yourself up over it okay ? Whatever actually caused it still means you have to deal with it now and that will make you very angry. I know I was ! Moods will fluctuate from the angry to the mystified and the overcompensating jolliness to the way out of just watching trees grow all on your own. There is a whole Miriad of feelings that you will go through time and time again so please try to go with the flow if you can and trust the doctors to do their job for you.

I know it is so hard. I wish I could just come to you and put my arms around you and tell you it will be alright. The tears are streaming down my face as I know exactly how you are suffering right now.

Try to stay strong Jen. It really is going to be okay in the end okay ? Mwah !

Luv X

Promise me you will ask your surgery for some help contacts as soon as possible as you cannot go through this alone. You need people who can explain things to you and talk about it as it happens right from the start.

[BarbaraSteele]

Hi Jennifer!

This is Barbara in USA...

You are my first post. I just signed up this morning.

Please do not panic. We always make things worse in our minds. Wait for further testing, find out what you are dealing with and go from there.

I don't know if you are a religious person, but I suggest you turn this over to god. The not knowing can be too much to handle, so don't. Let it go. Do not let the stress eat at you. I know that is easier said than done, but you need to go easy on yourself. You need to be strong to keep yourself well so you can get through this!

I recently started taking iodine for issues I was having. Some I could relate to BD and some not. I have read a lot about iodine and have seen numerous articles about DCIS and iodine. Lugols liquid was suggested. (There are many other liquid types/brands I would avoid kelp or iodine pills because they can contain natural occurring arsenic) apparently many believe there is a link between iodine deficiency and breast cancer. A large amount of woman are iodine deficient since it is hard to get enough from diet alone.

It (iodine) does something to the fibrous tissue of breast cancer (as well a fibroids and many other issues)

Search "iodine DCIS" and see what it says. You can have your doc test you (only certain tests are accurate, you can search "iodine patch test" to do a preliminary test at home with regular iodine tincture you can buy at any store) Your doc may be open to it, they may not. I would take it anyway. The sooner the better. I don't have cancer, but it helped several of my issues almost immediately. It can also help me keep from getting breast cancer (as well as several other types.) I do not like to take meds or synthetic substances except when I have to.

You will see what I mean when you read about it. Please let me know what happens. <hugs>

[Jennifer4284]

I have hope and I know I need to beat this I have two daughters that need me. I have Invasive Ductal Carcinoma situ stage 2b, Grade 3, her2 positive #3. I meet with my oncologist today. I have 4 mass's in my right breast, as well as it's spread into my lymph nodes too. I have surgery on 2/10 to have the chemo port put in my chest. I get what you mean by the whole moods swings because they are awful. Crying to down right pissed off. To yes, starting at the walls and not being able to wrap my head around it. I never thought at 32 years old that I would be dealing with breast cancer. It's all surreal. And when you say it's happening so fast you couldn't be more than right. My head is spinning from all the appointments, scans, blood draws. I feel like I'm on a roller coaster ride that's moving at a high speed at a 90 degree angle and I can't get off for the life of me.

[xandii]

Hi Jen,

Just touching base again to see how you are doing ?

I was 28 when I lost my womb and ovaries plus several infected lymph nodes in that area which has caused me other problems later in life. I also had endometriosis and three large chocolate cysts plus badly infected falopian tubes. They also had to cut back my vagina by three inches which also caused other problems which I'm sure you can imagine and they don't need explaining. No more kids for me then. I had already lost my only child in a car accident several years before so I figured it was someone telling me how totally useless I was anyway and I didn't deserve to have another chance.

I am now 58 and have Behcet's, Diabetes 2, Psoriasis, Psoriatic Arthritis, Liver Cirrhosis ( non alcohol related as I don't drink,) Vit D, B12 and B6 deficiency, Iron deficiency and they have now found I have latent TB in my system from being Born in Tobruk, Libya because my Father was posted abroad at the time and they have to give me some pretty nasty drugs ( I never do well and vomit continually most of the time,) to get it out of my system before I can even try Infliximab to try to help me with some of my conditions. I also get a vast amount of skin problems and am continually flaring with well ..... just about everything right now and can't have anti inflammatories anymore because they have caused Nasty ulcers and gastritis in my stomach that I keep having to go for gastroscopies to check if they are healing. They aren't. Lol. My knees are now so knobbly and bent that they dont hold me up most of the time anymore and I have to use a chair nowadays.

The reason I am telling you all this is not for the sympathy vote here !

I want you to understand that I am mostly a happy, jolly sort of character that needs to find humour in all of my situations and conditions to function. Its how I survive. There is not one single day that goes by when I don't give thanks for having another wonderful day on this Earth with all its problems and this has come from having my problems with cancer I have already explained.

It is a life changing situation but really, believe me, some good will come of it eventually when you are healed and well again ( as much as you can be with BD anyway,) and you will be so much stronger and know you CAN cope with whatever life throws at you !

Please remember .... talk about it all, don't keep it locked away ! Vent when you need to. I used to get old China from second hand shops and go to the bottom of my garden and throw it at the garage wall and scream loudly. I had a huge teddy that I used to beat up an awful lot as it was clearly his fault that all this was happening to me. Sounds mad but it helped a lot. Lol. Write peotry to put on record how you feel or start drawing or painting to let it all out. It really will help.

My last tip ..... take control of everything you CAN control to feel you ARE in control. Heavens knows there is an awful lot that is happening to you that you can't ! Anything like selecting the dates you book appointments, choosing food you can eat or want to eat, choosing to get a taxi instead of driving..... anything that you can do to take control of this nasty thing that you have to go through will totally empower you to keep going. Okay ? Mwah!

Please keep us all posted ?

Thinking of you every day. Take care,

Luv X xx

[Jennifer4284]

I just messaged you back a novel in a pm but your message in truly inspiring Love and I couldn't agree with you more.