Overwhelmed... (newly diagnosed)

disneyfan2008

A Jouranl helped me-i got one

A Jouranl helped me-i got one as a gift. I felt silly writing in it for awhile-but in hindsight i was helpful.

I also took friends or family with me to some Dr appts. *such as procedures ,things that my brain would go on overload for-2-3 more sets of ears helped.

 

rann1953

Hi, Getting ready for my firstround of chemo, nervous

Im sure this is normal,I also wonder constantly is this going to make me cancer free !I have stage 1 grade 3, right brast ,I had a lumpectomy .it isa emotional journey and iM staying postive,not sure what side effects to expect

 

Kathysuej

***UPDATE***

I finally got my surgery scheduled! Next Monday, Jan 16th, is the day! I'm having a bilateral mastectomy, and as it stands right now, the plastic surgeon will be there to start reconstruction by putting the expanders in. Ugh! I was really wanting to do the DIEP Flap, but since I couldn't get in to see a DIEP Flap surgeon yet, I am settling for implants (I wasn't sure if I would even be a candidate for the DIEP anyway).
Because my pain has spread and gotten worse, and my breast has gotten even larger in the last couple weeks, my surgeon had me get an MRI last Friday. I just got the results today....it's looking like I may have it in the lymph nodes. One on the left side looks highly suspicious and one on the right (which I don't have cancer in my right breast yet) also looks abnormal. So he wants me to get another ultrasound before surgery and possibly biopsies of the lymph nodes. He was planning on testing some of the lymph nodes during surgery anyway, but just wants to make sure that they either biopsy or mark those abnormal ones so they're easier for him to identify while he's in there. 
I'm not sure what all that means if it has spread to the nodes, other than I was told I would probably have to have chemo if it was. But I'm sure I'll find out what it means soon enough!
I may not be on here much right after surgery, but I will try and pop in when I am able and give an update! Thank you all so much!

Ace44

Just wondering how you were

Just wondering how you were doing...update when you can.

mollymiller

aisling8 said:

Three months

I waited three months between diagnosis and surgery and thought I'd go insane with worrying about the delay. I pictured it spreading up and down my spine, all over my body. That was six years ago. I completely understand your fears.

xo

Victoria

 

How long from diagnosis to surgery?

I was diagnosed December 16, 2016 and had surgery January 23. I too, felt every little ache and pain was the cancer spreading. I have a horrible feeling that I will NEVER get over this paralyzing fear. I am a worrier. I wish I were not! My fear is that I will never be able to enjoy another day of my life, with cancer looming in the background. I feel that in some cases, heavy duty depression is worse than physical pain. I guess I am almost scared for my sanity ~ Not to mention cancer spreading. It is good to know there are fellow sufferers out there!

 

mollymiller

Kathysuej said:

***UPDATE***

I finally got my surgery scheduled! Next Monday, Jan 16th, is the day! I'm having a bilateral mastectomy, and as it stands right now, the plastic surgeon will be there to start reconstruction by putting the expanders in. Ugh! I was really wanting to do the DIEP Flap, but since I couldn't get in to see a DIEP Flap surgeon yet, I am settling for implants (I wasn't sure if I would even be a candidate for the DIEP anyway).
Because my pain has spread and gotten worse, and my breast has gotten even larger in the last couple weeks, my surgeon had me get an MRI last Friday. I just got the results today....it's looking like I may have it in the lymph nodes. One on the left side looks highly suspicious and one on the right (which I don't have cancer in my right breast yet) also looks abnormal. So he wants me to get another ultrasound before surgery and possibly biopsies of the lymph nodes. He was planning on testing some of the lymph nodes during surgery anyway, but just wants to make sure that they either biopsy or mark those abnormal ones so they're easier for him to identify while he's in there. 
I'm not sure what all that means if it has spread to the nodes, other than I was told I would probably have to have chemo if it was. But I'm sure I'll find out what it means soon enough!
I may not be on here much right after surgery, but I will try and pop in when I am able and give an update! Thank you all so much!

get well, my dear!

I can imagine not getting to the computer as often after your surgery. My moods swing so LOW that I actually feel weak. Then I think the weakness is from the cancer spreading....And on and on! It worries that between biopsies and surgeries things could still be growing. I am at a point where it almost makes me feel ill to write, talk or think about my breast cancer. I do appreciate those of you who share so much of your story with the rest of us.

Ace44

mollymiller said:

How long from diagnosis to surgery?

I was diagnosed December 16, 2016 and had surgery January 23. I too, felt every little ache and pain was the cancer spreading. I have a horrible feeling that I will NEVER get over this paralyzing fear. I am a worrier. I wish I were not! My fear is that I will never be able to enjoy another day of my life, with cancer looming in the background. I feel that in some cases, heavy duty depression is worse than physical pain. I guess I am almost scared for my sanity ~ Not to mention cancer spreading. It is good to know there are fellow sufferers out there!

 

I felt the same way for about

I felt the same way for about a year after my diagnosis. I still think about it often but it doesn't consume my every thought anymore and it doesn't make me cringe with fear anymore either. (I was diagnosed in May 2015.) I imagine that one day I will realize that I haven't thought about it in days. That will be a victory to me. I hope that you will start to feel a little more at ease after you have had a chance to adjust to your new reality. I thought I would never feel normal again but there are definitely times (and more often than not) that I do feel normal.

Kathysuej

SURGERY DONE!

Well, it's been a while since I was on here last. A lot has happened since then.... I had a bilateral mastectomy on Jan 16th. Out of the 11 lymph nodes they removed from the left side, TWO were positive for cancer. None on the right side that they could tell. I have seen my oncologist and she suggests I have 8 Chemo treatments. Once every other week for 16 weeks. The first 4 doses will be Adriamycin & Cytoxan, and the second 4 doses will be of Taxol. Doctor says I go in for treatment then the very next day I go in and get a shot of neulasta to help fight infection. After chemo is finished I get a 3-6 week break and then start radiation. I don't know how much radiation I will recieve yet. 
I've had 2 more surgeries since the mastectomy. Both due to skin dying. My plastic surgeon was unsure if I'd be able to keep the expanders in or not, but he thinks it should be ok. I am still SOOOOO sore! The muscle is so tight across my chest! I feel like my chest is going to split wide open if I even take a deep breath! Ugh!
But all in all I think I'm doing okay. I'm trying to cope with it all as best as I can!

Apaugh

Continue to hold you up in prayer...

Glad your surgery is over for you.  Take it slow and allow your body to heal properly.  Listen to the docs and ask them all the questions you want and can.  A/C chemo is rough but it will kick that cancer's butt.  The docs will give you info on it and tell you ways to combat the symptoms the chemo will give you.  and your Pink ladies on here can help you too.  It is a fight but worth the fight to keep pressing on.  Hugs.

 

Teach76

Glad for a plan

I am glad to hear that your team was aggressive in getting your treatment underway.  Chemo can be rough, but all of us here would agree that it is necessary and doable.  Your team will monitor you closely and help with any side effects.  I would suggest that you keep a journal - I found with my treatments that the SE became predictable; for example, I would be exhausted days 3 and 4.  Knowing that enabled me to best schedule activity, like who was in charge of meals and transportation for my daughter those days.

Also realize that the scheduled plan will depend on how ready your body is . . . When I first met with my team we had a definite plan.  I thought everything would be done in 6 months.  Then little things happened and 13 months later I was finally done.  Be patient and allow yourself a break if you need one.

a2006sister

surgery or other options

Ask your doctor if you qualify for targeted therapy?  with this treatment they try to shrink the tumor down small enough to where they can save the breast but remove just the mass and surrounding tissue.  then radiation is recommended.   I was told by a very renounced doctor from md anderson that a mastectomy does not guarantee that cancer won't recur

Deanie0916

Hope you are doing better every day

the comments above are helpful. I would especially try to take a friend with you to write down details that you won't remember. I had stage 3a two tumors removed from my right breast. They tested my lymph nodes, 4 had cancer and they removed 26 lymph nodes. I had a lumpectomy so they removed a big chunk, I just couldn't bring myself to do the mastectomy. I also felt like every pain or twinge in my body was the cancer spreading, I think we all feel that way. I went hrough the ACT chemotherapy. I took ginger root capsules and stuck faithfully to the anti nausea meds they prescribed, I only got really nauseous one time when I was late taking the anti Nausea med. I worked through my treatments except for the day I had chemo, then I had the day off. The radiation was easier to handle, I didn't get burned except for one little spot. It has been 8 years since my diagnosis and so far there is no evidence of recurrence. I hope this helps you to see the other end of it, the treatments will end and you will get your life back. Maybe not exactly the same, but you will be blessed in many unexpected ways. I will pray for you and your family, Kathysuej.

jojo2984

unknown said:

lessons learnt

Hi there, what i have learnt throughout this awful process is that you or the professionals can never really be sure that you wont get it back. That is the awful raw truth. And because someone has had it before you think that you are more likely to get it back than someone who hasnt had it. I found it most diificult when all my treatment had finished. While having treatment you have things to focus on, emotions are mixed up, life isn't normal. When that all stops you are left with trying to live your life again. The truth is your life will never be the same again. You can make the best of it but it will never be the same as it was. I am getting better each month at dealing with it. It is a case of accepting what happened and trying to live your life again without it controlling your every thought and action. I still have worries every time i have a niggle somewhere and i think thats what it will always be like. I am sure others will agree. I have to accept that i wont be routinely tested unless i get a problem, that is just how it works here. I maybe could pay privately but would cost numerous thousands of pounds every year and even then i am not sure they would do it as i was constantly being told alot of tests give you radiation that we want to avoid. I cant change what has happened and i cant ever guarantee my future health,so i can only adjust to my new life. Take care of yourself and remember there are alot of survivors too xxxxx

Feeling the same

Yearly mammogram oct. 2016,  biopsy Nov. 2016  , lumpectomy Dec.2016,  radiation twice a day for a week,  now scheduled for chemo port valentine's day next week with chemo taxotere and cytoxan to soon follow. My cancer was stage 1, estrogen eating and fast growing,  caught early size of a pea,  lymph nodes were ok.     Have had ct of chest, abdomen,  yesterday a full body bone scan.

I feel numb !    I don't know what to think, feel,   nor ask !    No use asking why 

Chemo has me so scared !     Keep finding myself asking after what all is to come,   will chemo make,  leave me worse!  After radiation and chemo , and an estrogen blocker for 5 years,   I still have a 15%  chance that cancer somewhere in my body could return !   I had the genome test.  Number came back 29.     Can I live with knowing this!     If cancer should return in my life they can only treat,  not cure but,  guess this is what I have been doing so far. 

I bought a couple of head scarves on ebay  to prepare for what's ahead.    Right now with hair they are cute  BUT I told myself !   Will I be able to handle what is to come  !   As tears are now pouring down my cheeks.     

 

I'm so scared 

Thank you for listening,  for sharing 

 

Kiki2016

jojo1595 said:

Feeling the same

Yearly mammogram oct. 2016,  biopsy Nov. 2016  , lumpectomy Dec.2016,  radiation twice a day for a week,  now scheduled for chemo port valentine's day next week with chemo taxotere and cytoxan to soon follow. My cancer was stage 1, estrogen eating and fast growing,  caught early size of a pea,  lymph nodes were ok.     Have had ct of chest, abdomen,  yesterday a full body bone scan.

I feel numb !    I don't know what to think, feel,   nor ask !    No use asking why 

Chemo has me so scared !     Keep finding myself asking after what all is to come,   will chemo make,  leave me worse!  After radiation and chemo , and an estrogen blocker for 5 years,   I still have a 15%  chance that cancer somewhere in my body could return !   I had the genome test.  Number came back 29.     Can I live with knowing this!     If cancer should return in my life they can only treat,  not cure but,  guess this is what I have been doing so far. 

I bought a couple of head scarves on ebay  to prepare for what's ahead.    Right now with hair they are cute  BUT I told myself !   Will I be able to handle what is to come  !   As tears are now pouring down my cheeks.     

 

I'm so scared 

Thank you for listening,  for sharing 

 

Understand your fear

so sorry for what you are going through. You are stronger than you think.  You are a warrior! I was diagnosed on Feb 1 in 2016.  Stage 2 Her2+.  It's been a year.  I got through chemo, a double mastectomy (only one side had cancer), and radiation.  I got my hair cut short before my 1st chemo.  Exactly 10 days after my first chemo I stepped out of the shower and ran my hands through my hair.  Two clumps came out.  I called the girl who has cut my hair for years and had her shave my head that day--I was in control of when the hair came out.  I cried my eyes out while se was shaving my head and every employee and customer in the salon formed a circle of love around me.  I bought some cute "chemo caps" (headscarves.com) and just embraced the situation.  You can't control that this happened to you but can control your reaction. You teach cancer who is in charge--you are!  You will kick cancers ****!  Try to stay strong and positive.  When you have chemo tell yourself you are getting liquid gold into your veins.  

Kathysuej

a2006sister said:

surgery or other options

Ask your doctor if you qualify for targeted therapy?  with this treatment they try to shrink the tumor down small enough to where they can save the breast but remove just the mass and surrounding tissue.  then radiation is recommended.   I was told by a very renounced doctor from md anderson that a mastectomy does not guarantee that cancer won't recur

There was no way

There was no way to save my left breast. The largest one was basically attached to my nipple, they had to remove the nipple no matter how big or small the tumor was. And yes, I have heard there's no guarantee or anything. I opted to have my right breast removed as a precaution. 

Kathysuej

Treatment Delayed & Staph Infection!!! UGH!

It's been well over a month since my mastectomy and I STILL haven't been able to start treatment. I've had so many complications! I've had issues with necrotic skin and not enough skin on left side. My plastic surgeon is worried he may have to remove the expanders and forego implants, leaving me with very limited options for reconstruction. I may not be able to do any at all. Oh how I pray that doesn't happen.

I just got out of the hospital a week ago. I got a Staph Infection! I started getting this incredible pain in my left side/rib cage area. Started feeling just really horrible and developed a fever of 102.7. It was awful!
See, I have this open wound (hole) on the left side that I have to pack twice a day with gauze. The hole is from the stitches breaking open one of the last times they cut away dead skin from the incision area. The big hole and the JP drain (yes, I STILL have a JP drain on my left) are where I got the Staph infection. It was horrible!!! Of course, all this has postponed my treatment. They won't start Chemo until I'm healed up from all this other stuff! 

As of right now, the hole is closing up some. Instead of going 2+ inches deep, now it's only 1/2"-3/4" deep. I still have the drain. Pain is still a constant, but I've finished the antibiotics and haven't gotten any fever again (good sign).
I have an appointment in an hour and a half, he may remove the drain, we'll see! I'm hoping everything goes well and there's no more hospitalizations or surgeries in my near future! I also hope I'm able to start my treatment soon. It's scaring me having it all delayed so much!

Kathysuej

Deanie0916 said:

Hope you are doing better every day

the comments above are helpful. I would especially try to take a friend with you to write down details that you won't remember. I had stage 3a two tumors removed from my right breast. They tested my lymph nodes, 4 had cancer and they removed 26 lymph nodes. I had a lumpectomy so they removed a big chunk, I just couldn't bring myself to do the mastectomy. I also felt like every pain or twinge in my body was the cancer spreading, I think we all feel that way. I went hrough the ACT chemotherapy. I took ginger root capsules and stuck faithfully to the anti nausea meds they prescribed, I only got really nauseous one time when I was late taking the anti Nausea med. I worked through my treatments except for the day I had chemo, then I had the day off. The radiation was easier to handle, I didn't get burned except for one little spot. It has been 8 years since my diagnosis and so far there is no evidence of recurrence. I hope this helps you to see the other end of it, the treatments will end and you will get your life back. Maybe not exactly the same, but you will be blessed in many unexpected ways. I will pray for you and your family, Kathysuej.

Oh, thank you so much!

I've been hearing so many stories where the cancer comes back and it just scares me so badly! So thank you so much for sharing a more positive story! I pray you never have to endure any of this stuff again!

Isabella99

Hello there!

Hello there!

I totally understand how you are feeling right now... It is really overwhelming.

My husband was diagnosed with an advanced stage breast

cancer over a year ago. Last year was the hardest year of my

life... He first had a surgery, then 6 months chemotheraphy

followed by about 6 weeks radiation. A long, hard journey

is waiting for you, but I am sure you will be strong

and you beat the beast... So glad to hear you have awesome

kids to help you and support you. Hugs and warm wishes to

you!

Apaugh

Kathysuej said:

Treatment Delayed & Staph Infection!!! UGH!

It's been well over a month since my mastectomy and I STILL haven't been able to start treatment. I've had so many complications! I've had issues with necrotic skin and not enough skin on left side. My plastic surgeon is worried he may have to remove the expanders and forego implants, leaving me with very limited options for reconstruction. I may not be able to do any at all. Oh how I pray that doesn't happen.

I just got out of the hospital a week ago. I got a Staph Infection! I started getting this incredible pain in my left side/rib cage area. Started feeling just really horrible and developed a fever of 102.7. It was awful!
See, I have this open wound (hole) on the left side that I have to pack twice a day with gauze. The hole is from the stitches breaking open one of the last times they cut away dead skin from the incision area. The big hole and the JP drain (yes, I STILL have a JP drain on my left) are where I got the Staph infection. It was horrible!!! Of course, all this has postponed my treatment. They won't start Chemo until I'm healed up from all this other stuff! 

As of right now, the hole is closing up some. Instead of going 2+ inches deep, now it's only 1/2"-3/4" deep. I still have the drain. Pain is still a constant, but I've finished the antibiotics and haven't gotten any fever again (good sign).
I have an appointment in an hour and a half, he may remove the drain, we'll see! I'm hoping everything goes well and there's no more hospitalizations or surgeries in my near future! I also hope I'm able to start my treatment soon. It's scaring me having it all delayed so much!

I did that too

I got an infection after my surgery too.  It was awful.  My incisons burst open in 4 places and all this ucky infection just covered me.  It ruined my mattress, it ruined my gown.  Weekly office calls to keep a check and treat it.  It was nasty.  I cried and cried.  It put off my chemo treatments for close to 2 months.  Dial antibacterial soap helped with the healing.   That was a year ago.  I will be done with my chemo treatments mid July.  It has been a rough trip, but I am still kicken and fighting like a girl.  Keeping you in my prayers. 

hugs,

Annie