Stage IV Breast Cancer Survivors?

I agree with MK...if the doctors are recommending chemo, then that is her best hope of increasing her lifespan. And at 61, I'll bet your mom has a lot of life left in her! And they may combine that with the hormone blockers, which can really help, as well. I hope you can convince your mom that chemo isn't the awful experience it was years ago. They have good drugs to combat the side effects of chemo now. I had 6 months of chemotherapy (I was only stage II), but I worked all the way through my treatments...I never lost a day of work from it. Yes, I lost my hair, and there were days when I wasn't 100 percent, but chemo bought me many years of life...enough to see my kids graduate from college, both are in post-graduate studies now, and to see my first granddaughter born...what a gift! And they're gifts I would otherwise have taken for granted. So... again, good luck.

Hugs...
BEV

colorado mom,

my wife was diagnosed with stage iv back in Dec. 07 (age 39). she was 20-weeks pregnant with our (now healthy) daughter at the time and doctors initially planned only to keep her alive until she reached 32-weeks, if possible.

she had mets in spine, liver, ribs, brain... she has been getting regular PET, CT, MRIs (every couple of months) since. All have been negative since spring of 08. She also gets regular blood tests of CA 27.29, Arimidex daily (Ovaries were removed during c-section), aredia monthly to repair bone (also has anti-cancer activity), and she has been doing very well until recently. minor set back, discovered carcinoma in situ in left breast (origin of cancer) and cells in a couple of her lymph nodes. mastectomy of left and under-going recon.

in addition, my wife's vision was also affected and she has double-vision due to nerve damage, but corrected with prism glasses. she also had a collapse vertebra and though reinforced with kyphoplasty, she still suffers from uncomfortable and chronic back pain, so she is also on painkillers.

anyway, she has been doing well and the medical community has been very impressed and amazed at her recovery and current status. her oncologist has decided not to resume chemo and feels that current course will be fine for now. don't want complications of chemo to affect other concerns such as optical nerves, etc. if needed, can always go to chemo... i was concerned about this change from chemo to no chemo, but as often and as well as she is being monitored, i feel a little at ease with the decision. she would have been given Taxotere, which is known to cause nerve damage.

it helps that her oncologist is one of the most celebrated and known in the region :)

in short, my wife is doing well.

Julie,

My wife is HER2-, test/estr+ .

Thank you. My daughter is now 18-months old. Premature and still catching up, but catching none the less.


Richard

Post Edited (myMaria) : 7/10/2009 5:05:56 AM (GMT-6)

max2max,

i am very sorry to hear this...yes, stage iv, but not the end. stay strong and be a helpful and supportive advocate.

colorado mom said...

I am a 42 year old 2 time bc survivor. First time was Stage 1, four years later Stage 4 with liver mets. I'm looking for other people who have been doing well with Stage 4 -- I guess I'm looking hope hope. Right now I am NED, after eighteen weeks of Taxoterre, Carboplatinum and Herceptin. I get Herceptin every three weeks, and Zometa every six months.

Is there anybody out there?

Hello,
My mother is now diagnosed with stage 4 bc. She is not doing too well. She is in a lot of pain. I'm not sure what to do or say. All I can say is that my strength and faith in God has increased and that's what gets us all by.

God Bless

Thank God I found this website.  Long story short, it appears that my Mother (68) has breast cancer and that has spread to her liver and bones (1 'spot' on her liver, 3 'spots' on different bones.  She had a mammogram last year that came back clean.  They found a 'lump' measuring 4 cm behind her left breast on Thursday.

I am so terrified for her and for me.  Everything I have read so far is pointing to Stage IV breast cancer (although this has not yet been confirmed). And everything that I've read, except for this column, has listed this disease as terminal.

The doctor cannot understand why my mother is not showing any of the 'typical' symptoms.  She has lost 35 lbs from spring of  last year (doctors orders) and I noticed that she is a little tired (which I assumed was age).

We meet the Oncologist next Wednesday, who will give us more details hopefully.  My Mom seems okay with everything, whereas I am a complete and total mess.  Just knowing that there is a chance, and that these websites can be wrong, gives me hope. 

Does anyone have any suggestions of things I can do to help my mother, nutritionally etc.  Do all medications cause the horrible side effects I read about?  My mother retired to take care of my 2 young children while I work.  She insists that she is fine and she wants to continue to watch my girls until she can't do it.  Should I allow this?    I need to know from people who went through the battle.

Any help, suggestions, prayers you can offer would be greatly appreciated.

God Bless you all!

Louise

Recently diagnosed with Agressive EST/PROG NEG, HER2 POSS IDC. Four tumors originally scanned in Right breast, new doctor found about 6-8 more tumors in my lymph nodes that have tested positive for cancer. Going for MRI, Bone Scan, marker testing and PET next week.
Lump is quite large now, found it myself, no thanks to the radiologist who has been reading my mammos for the last 5+ years.
Prior to 2008 he was using old technology which I can not read well, but beginning 2008 to date in digital I can see the microcalcifications (cancer precursers). It would have been nice if I was told what calcifications could mean and where they were so I could at least monitor them. All I got was a normal or benign Bi-Rad. In fact two of the areas targeted by the the computer aided software identtify the exact same areas I now have tumors. So this has been going on for at least 3+ years. (I just found the lump 6-19-11). I am not real happy about this medical neglect and after this much time without treatment I don't see how my tests next week could possibly with a favorable outcome. Anyone out there have any similar issues? or guidance? I have no idea what to expect or what to consider.

i had a scare in my right breast and they even did a ultrasound and said it was ok, then a year and five months later i end up with breast cancer in the left breast. i wonder could they have gotten the breast mixed up. i don't know, but lady's please give yourselves self exams. i injured my left breast and left it alone and come to find out i had breast cancer. now stage iv w/liver to mets and bones. i had all the surgeries, lupectomy, radation and only isolated tumor cells in lymph nodes and it spread within 1 year. now on chemo to keep me going
i also was taking femara but it supposidly did not work even though my tumor was estrogen positive. if you ever have any ackes and pains after breast cancer, make sure you get a mri or pet scan asap by your doctor. insist on it do not wai like i did for 4 months

I have been reading about vaccines they have out now for Her 2 positive and Genetech company just came out with a new drug for Her 2. If you need more info let me know.

Ok Ladies, I see that no one has posted in awhile. We need these posts. For those who are newly diagnosed with stage 4 breast cancer, I am sorry to welcome you to the club, but life is far from over.

 

I was diagnosed August 5th, 2013 by accident. I went to the ER after being in pain for a few months, but thought it was kidney stones. I only went to the ER because I finally figured the buggers were just to big to pass. I had never had stone before, but what else could it be? I had breast cancer in 2006 when I had just turned 36, but had been cured with chemo and radiation. All of my mammograms had come back normal since, so no worries, right? Oh, boy! They did a CT of my abdomen and found a 3 cm mass in my kidney. They also caught my lower lungs, which showed several mets. I was shocked! I did not have medical insurance, which is why I went to the local health department every year for my free mammogram after my initial 6 month check up cost a small fortune and I just could never afford it. I had to stop taking Tamoxifen in 2009 as it caused massive uterus pain and swelled my uterus wall passed the danger point. I had a biopsy and was to have that annually too. I thought this could be kidney cancer or lung cancer, but a kidney biopsy revealed that it was the breast cancer back again.

 

I have many tumors in all of my lobes. Even a right middle lobe, which I had thought we only had four lobes. I have more than 9 in my lungs, nine is just the ones they measure every three months. They always add, "and several other smaller nodes." It caused my left kidney to fail. I have a spot on my spleen. My arm bone and three spots in my spine. And my neck!

 

Well, this just stunk, to say the least. I am close to finally getting my BA in international relations. A passion for me. The oncologist just said, "that is unfortunate." Hmm, really? But, it is not like he could say, "oh, geez! I did not know that. Hold on and we will change this!" LOL His next words was that we needed to schedule to have a port put in. Well, I know what that means! I said I am not getting a port and I may not even take chemo! I had to come back to see if I was still hormone positive. I was, thank goodness! Anyway, my oncologist, much to my surprise, told me we can try hormonal options first as my cancer was double hormonal positive (or very hormonal as he put it). I found out I could have my ovaries out! Just my ovaries! No radical hysterectomy or anything! Why did no one tell me this a few years ago? I had my ovaries removed by laparoscopic surgery. Great choice!

 

My first three month scan showed some shrinkage. My second three months they started PET scans and the cancer was "better than stable" as he put it, after I had asked.  The largest tumor in my kidney was not showing much uptake, like it is dying. The other tumors had stayed the same size since the original shrinkage. I am due for my next PET. I was to have it today, but it needs a part and I am rescheduled for next week on Thursday.

 

I have refused chemo or radiation, so far anyway. I have only had the ovaries removed and I have been doing pretty darn good. Even my oncologist was shocked by his rebel patients outcome so far! He even said, "the treatment is working." He also stated we have other hormonal options and will exhaust all of them first. I am tickled he is working with me and did not shove chemo down my throat!

 

I knew my cancer was back by how I had been feeling. Loss of energy, like a car on empty. But, all my mammograms were fine! I started thinking it was depression or that school had made me lazy! After all, I was constantly on the go and working on something on my fiancé's 58 acres. Raking whole hillsides or out with the goats. I would walk for miles on the weekends out looking for wild herbs. I slowly tuckered out to a near halt! Here this cancer had been sneaking up on me for 2-3 years. Oh, I still feel like hell, but I am still here. I am still working on finishing my degree. Yeah, I took a break from school to get over the shock, but I am getting back on track. I was a honor student! I worked hard and was not going to quit now! I also need to be here! I have four children. My oldest daughter is 23, my only son is 20, my teen daughter is 14, and my baby girl just turned 10 the end of December. My husband died of esophageal cancer 9 years ago (I lost my mother and my husband 9 days apart, both to cancer). My oldest has her father, but the rest have me. I cannot go anywhere right now!  In my opinion, chemo tears down your body and immune system. There is some research that suggests that people who refuse chemo live 4 times longer. After my last battle, my immune system was down for two years! There is no way that I could fight a battle like that! But, that is my own personal choice and, after all, my cancer is very hormonal. =)

 

Most days I feel like hell, but I have found when I push myself that I can do more than I think. Then I feel better because I did it after all. I can wear out and I do need more sleep, but I am here and not going through chemo hell. I am not sure what I would have chose had I not still been hormone positive. But for now, I feel good enough and I am doing great! I have 99% oxygen, lol, in spite of all the lung tumors and the fact that I smoke! Yeah, I have thought about quitting, but it is a little late for that, I am a little stressed, and...what is it going to do, kill me? ha ha!!! (I love dark humor. It keeps me going).

 

I wrote this for you new stage 4 ladies. I do not want you to come here and not see any new posts, like I did. I want you to see that we can be just fine and choose our own routes. The route that is right for us. I want you to see that if you have a couple mets that it is not the end of the world, because I have tons of them and I am still on the right side of the grass, so you can be too! I have grade 9 cancer, the most aggressive, there is no 10! My oldest daughter and all of my other family live in other states or on the other end of the country. Its just my fiancé, my three younger one, and myself. I live very rural and I am a transplant to this state, so I have acquaintances, but no close friends. I have little support, but I am here for my three younger ones who need me. I do not know what would happen to them and that is what frightens me. Life has never been easy for me. I have had a rough way to go since I was a baby, so if it were not for the fact that my younger ones mostly only have me, then it would not bother me a bit to take the next stop off this planet. But, for them, I am kicking and fighting to stay! You need to find your reason. Trust me, the shock wears off after the first couple months or so. You will be alright! Research and choose your path, your way, and never let anyone make you choose a different route or a doctor force a treatment you do not want. It is YOUR battle, not theirs! You are not alone! For if I see a reply to this post in my email...within 2-3 days (school work, kids, doctors appointments) I will answer! I have not changed my email in over a decade, so I will answer. Every breast cancer is different, but stage four stinks for all of us! ha ha!

 

Much love and big hugs, Dawn  8 months and 6 days since diagnosis!