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Topic: It's official-I've joined the club

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Metastatic breast cancer (MBC; also called stage IV) is breast cancer that has spread to other parts of the body, most commonly the bones, liver, brain, or lungs. Metastatic breast cancer can be treated but not cured. Metastatic disease is NOT hopeless. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.

Note: Please contact your doctor for any specific concerns about symptoms you are experiencing or your course of treatment.

Learn more about living with MBC.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Jul 19, 2007 07:56AM

BJW wrote:

My surgeon who did the Oopherectomy/hysterctomy found breast cancer in the endometrium, one tube and one ovary-microscopic but breast cancer nonetheless. Met with my oncologist late last night and now that we have "tissue confirmation" we are moving ahead-PET scan on Monday to restage and see the whole picture, starting Herceptin weekly on Wednesday, Femara started a week and a half ago. My first ever cancer marker will be drawn today.

Will be sitting my girls down (10 & 6) after the results from the PET scan and telling them-THAT will be my hardest day yet. They were so young last time one didn't understand at all and the other sort of understood, but not the implications. Since that time they lost their Papa (my Dad) so they know death is something that happens.

Have my appointment with the folks in seattle on August 30th, but in the meantime will start treatment. Trying to find the right pain meds-opiods are making me very nauseated-but it is bearable today with Naproxen. My pharmacy cupboard has expanded by leaps and bounds.

I am ready for this fight-

Jill Log in to post a reply

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Jul 19, 2007 07:59AM jpann39 wrote:

Jill,
Im sorry to hear this news ....please keep us posted and let us know if there is anything we can do to help you....

Hugs
Jule
'Gain strength by the positive and don't be sapped by the negative" Dx 11/4/2006, IDC, 2cm, Stage II, Grade 1, 0/9 nodes, ER+/PR+, HER2-
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Jul 19, 2007 08:27AM wallan wrote:

So sorry to hear this.... HUGS to you and your girls.

Wendy A
Dx 3/29/2004, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/18 nodes, ER+/PR+, HER2- Surgery 3/31/2004 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 6/1/2004 AC + T (Taxol) Radiation Therapy 12/1/2004 Whole-breast: Breast, Lymph nodes, Chest wall Dx 1/25/2017, LCIS/DCIS/ILC/IDC/IDC: Mucinous/IDC: Cribriform, Left, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 3/8/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Fat grafting Hormonal Therapy Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 19, 2007 08:31AM mar8dar wrote:

Jill,

I am so sorry to here this news. I was around 9 when I was told of my mothers breast cancer (initial diagnosis) and this was about 35 years ago. I think that each child is different on how they handle the news. My son handled my diagnosis alot harder than my daughters. He kept alot of his feelings inside even though my husband and I encouraged him to speak with people about it, I think he did speak with his friends and sisters. I am glad that you are finding the right balance of pain relief. I think that medicine has gotten much better than in my mother's time. I am here if you need me!
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Jul 19, 2007 08:35AM starsfan wrote:

Pulling for you and praying for physical and emotional strenght for you.
Lina
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Jul 19, 2007 08:56AM ForTheMoment wrote:

Oh Jill... Bummer!!! Small word for a huge disapointment, I know.. but it is the best word I have for all of us.

Hang in there, you'll get through this in a flash.
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Jul 19, 2007 10:16AM LuAnnH wrote:

Jill,

That just stinks! As for the pain meds, there are alot to choose from. I went through a few different things until I found the right one to ease my pain. I ended up on a fentayl patch earlier this year and I finally had relief from my pain. I started on herceptin in May and within two weeks of starting I needed a CT of my lungs for a possible clot. That CT showed a major improvement of my recent progression. I am currently on Zometa, herceptin & faslodex. I hope to be on this course of tx a long time as it is very tolerable and gives me a good QOL. I did recently get a port to make all the infusions easier. I will be praying you get as good of results as I did.

LuAnn
LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Jul 19, 2007 11:00AM kimmytoo wrote:

I'm sorry Jill, was hoping for better news for you...

But, you can do this -- just sucks to get started again....

BTW - 'the talk' with the kids is horrible, but we try to be very realistic with them....
Dx 8/25/2003, IDC, 2cm, Stage IV, Grade 2, 12/20 nodes, ER+/PR+, HER2-
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Jul 19, 2007 11:51AM Doc wrote:

Jill, I hope you don't mind if I ask you this, but before you had the oopherectomy/hysterectomy, did you have any indication that the cancer had spread, or were the procedures being done to remove the source of estrogen? Sorry if I have missed any posts by you about this, and triple sorry that you have found out the cancer has spread.
Cool oncologist to pow-wow with you right away and start your treatment right away.
Doc Dx 2/8/2005, IDC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Jul 19, 2007 12:58PM katie11 wrote:

Dear Jill,

I am so sorry you are going through this just now and my heart goes out to you. It is more or less a year ago today that I had my diagnosis of BC and mets to liver and bones from the get-go and I also sat down and had to talk to my girls - ages 7 and 10 at the time - so, I know how hard this is for you.

Please know that all is not hopeless, however. I am a year into my mets diagnosis and still have no symptoms and my life has carried on pretty much as normal - apart from the worry and the endless round of medical appointments, of course! I met with my onc the other day and he is still talking about the years of treatment I have ahead of me - yes, that's years and not months!

Sending lots of healing and positive thoughts your way!

Hugs,

Katie xx
Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Jul 19, 2007 03:46PM Carmelle wrote:

Jill,
So sorry to hear this...truly sorry that you have been sucked back into the treatment world again.
I have 6 & 7 year old and your day is the day i dread so can only imagine.
Hugs to you and your family.
Michelle
Yesterday is History... Tomorrow is Mystery...Today is a gift. Dx 3/7/2003, IDC, 6cm+, Stage IIIA, Grade 2, 5/15 nodes, ER+/PR-, HER2-
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Jul 19, 2007 03:50PM Fitztwins wrote:

Jill, I feel your pain about telling your children. I have replayed that in my mind a thousand times. There are some great book resources out there. I am sure the 6 year old will not understand a lot. I know, I have 2 of them!

Best of luck to you.

You will be here a long time. The fact that herceptin is on your side is wonderful!!!

Lets hope you keep this stuff at bay for years and years!!

Janis
Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/18/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 1/31/2005 AC + T (Taxol) Radiation Therapy 4/30/2005 Breast, Lymph nodes Targeted Therapy 5/31/2005 Herceptin (trastuzumab) Hormonal Therapy 12/31/2005 Femara (letrozole) Hormonal Therapy 6/1/2008 Aromasin (exemestane) Targeted Therapy 6/30/2008 Herceptin (trastuzumab) Hormonal Therapy 6/14/2013 Arimidex (anastrozole) Targeted Therapy 9/4/2015 Perjeta (pertuzumab)
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Jul 19, 2007 04:39PM jacqniel wrote:

I know how hard it was to tell my sons about my cancer - first in their teens and now as young men. It would be even harder at your children's ages. I pray that your scans all come back fine and that your onc's tx will easily take care of this new concern.
Hugs, Jacque
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Jul 19, 2007 06:02PM WendyV wrote:

Hi Jill - just another metster mommy chiming in. You are right, the most difficult part of this journey is telling our children. We have to muster every ounce of strength for that conversation. Kids worry about their Mommies. I found out very quickly that I had to explain to my children, the oldest being 13 and 11 at the time, that Mommy was going to cry sometimes. If they saw me cry they immediately thought that something very terrible had happened, or that I had received bad news at my doctors appointment. I had to explain to them, that my crying wasn't always a bad thing. Sometimes my tears were just because I was so happy to be their Mom. They actually got to a point when they would ask, "Mom, are those happy tears or sad tears?" Fortunately the tears come far less often. 9 months have passed since my BC/mets dx and things are looking good. Hair is growing back, energy is back, and lately there are no reasons to cry! You'll get their too. Isn't it amazing what our kids can do for us. Just think of the amount of strength that you are able to draw from them. I know that there isn't anything that you wouldn't do for you girls, and that determination is going to see you through this.

My prayers will be with you as you get your PET scan and prepare to tell your children. We are all here for you Jill. And yes you are ready for this fight, because your not in it alone - we are all with you! Keep us posted on your results. Sending lots of strength, courage, love and hugs to you Jill.
Wendy
Life isn't about waiting for the storm to pass, it's about learning to dance in the rain.( bone,liver,brain,lung mets) Dx 10/9/2006, IDC, 4cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Jul 21, 2007 07:46AM sushanna1 wrote:

Jill,

My heart goes out to you. Hang in there.

Sue
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Jul 22, 2007 02:04PM jjb1984 wrote:

Hey Jill
The kids are definitely the hard part. I try and suck it up so I don't cry too much, but luckily life gets in the way and there's little time to cry. Although sometimes a good one is like therapy....!
Strength and courage headed your way Jill!
((hugs))
Julie
Dx 3/3/2006, IDC, 6cm+, Stage IV, ER+/PR+, HER2+
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Jul 22, 2007 06:14PM BJW wrote:

sorry ladies, have only had energy to post on the hormonal therapy page-meds have been making me very sick---pet tomorrow, results by wednesday, will post when i know more. hyst was done because of vaginal bleeding and I was on tamoxifen-surgeon does not think the bleeding was because of the cancer cells...i'm off to go lay down again

jill
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Jul 22, 2007 06:18PM katie11 wrote:

Dear Jill,

Sorry to hear you are feeling so unwell on the meds and hope you start to feel better soon. I will be thinking of you when you have your scan tomorrow and sending positive thoughts for good results for you.

Hugs,

Katie xx
Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Jul 22, 2007 06:43PM LuAnnH wrote:

Jill,

I hope you are feeling better soon. Sending you lots of good thoughts and prayers your way.

LuAnn
LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Jul 24, 2007 08:07AM BJW wrote:

got up to do the PET scan-was fine (okay, not fine but you know what i mean) for about 1/2 an hour then whamo-dizzy, nauseated, dry heaves, had to sit down 5 times just to get dressed-and forget about makeup and hair. So, I did a half of a phenagren suppository (0730) and into the car we go-the heaves subsided as well as the nausea, but then I was just gorked (that is a medical term-is it not?). Slept thru most of the injection sit still time, slept thru most of the scan. Got out of there and had a frosty (yummy!!) came home, barely made it to the top of the stairs and passed out (2:00pm). Slept most of the day away and then the pain came (6:00 pm), took a vicodin that my hubby had left over-fell asleep again. Woke up and had an apple (what a meal) fell asleep again until 3:00 am. This is quality of life? Forced myself to eat 2 pancakes this am, pain is at a 2-weak doesn't begin to describe it...didn't take the femara last night. what is making me feel so fricken horrible?? Appointment tomorrow with onc-pain managment nurse will be there too-Pet scan results, starting IV herceptin-please lord give me strength. we have got to get this figured out.

jill
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Jul 24, 2007 09:13AM AusAla wrote:

Jill,
I am so sorry you are having such a difficult time! Hopefully, your appt tomorrow will offer you some answers and most importantly, much relief from your pain and feeling so awful. I've been on herceptin for over 3 1/2 years. It is a wonderful drug. I truely believe I am here today because of herceptin. Side effects are low to none with this drug. Ocassionally I will feel slightly fluish the night I receive tx, but it is gone by 24 hours. Know that we are here for you.
Thinking positive thoughts and praying for you,
Bethie
"I don't want to be in a battle, but waiting on the edge of one I can't escape is even worse! Pippin, Lord of the Ring: Return of the King Dx 5/13/2002, IDC, 2cm, Stage IV, Grade 3, 3/17 nodes, mets, ER+/PR+, HER2+
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Jul 29, 2007 07:39AM raven81 wrote:

Jill,

Thinking of you and saying lots of prayers. Let us know how you are doing when you can.

Hang in there,

Eileen
Live Simply, Love Generously, Care Deeply, Speak Kindly, Leave the rest to God Dx 10/30/2003, IDC, 3cm, Stage IIIA, Grade 3, 7/20 nodes, ER+/PR+, HER2-
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Jul 30, 2007 10:01AM GreenHeron wrote:

Jill,

This is the hardest time, once you know what's what and have the meds/pain stablized, you can put your energy in the FIGHT. Telling the kids is hard, but if it helps (worked for us) I signed the kids up at an art therapy class for kids of parents undergoing treatment so they could talk about it, ask questions, and admit a bald mommy was somewhat embarrassing (honest male middleschooler....). Anyway, gave them a support less emotional than me (!) and a place to honest.

I am thinking of you and sending my best wishes, prayers, and hugs...

Flashdif
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Jul 30, 2007 11:48AM mom2acat wrote:

Jill, I'm so sorry you had to join this club. I hope your doctor can get things stabilized soon so you feel better and can get back to having as normal a life as possible again.
And remember, we are always here for you!
hugs,
Shari
Original dx stage II, May 2003; bone mets April 2007 Dx 4/8/2007, 5cm, Stage IV, Grade 2, 5/19 nodes, mets, ER+
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Jul 30, 2007 07:17PM hh2mom wrote:

Jill, I am also in the club and have two young girls who were only 3 the first time around and are now 11. I have been stage 4 for 3 years and counting. In fact, we just told our girls last week. I will tell you that our decision to keep it from them for a few years was not without controversy, but it worked for us. I think I put it off for so long because I just couldn't do it. We don't want to cause our children fear, we as their mothers make their worries go away. It is so unfair, but I can tell by your posting that you are going to make it. I told my girls, Hannah and Haley, that I am not dying of cancer, but I am living with cancer. My prayers are with you. I am sorry that you have to go through this.

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