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Any Stage IV success stories?

Jules13
Posts: 17
Joined: Feb 2012

My Mom's biopsy results just came back and what the doctors had originally thought was a sarcoma came back as a carcinoma, originating in the uterus.

My Dad didn't ask any more (which drives me nuts) but her appointment with the Gyn Oncologist is in a couple of weeks. Until then, we are just waiting and feeding her the best foods we know how. I hate the waiting and feel like we should be doing something else.

Meanwhile, she has a large tumor in her right leg (top back near hamstring), which we thought was the primary, but it's not. It's so painful that she can hardly walk any longer and must use a walker for the little walking she does do. It is also in her left leg, pelvis (this was shown on CT scan and MRI - would this be the uterus?) and lungs.

The doctors said it's slightly easier to treat, however when she first when in 2 weeks ago they said it was too advanced to treat (this they told her without even having done the biopsy).

We are looking into alternative treatments as well and since there seems to be more active voices on this discussion board verses the sarcoma one, I thought I would ask for some hope.

She won't talk about it either, which is hard. I am so sorry all of you having to go through all of this....I just never knew....until now.
J

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

I'm sorry your mother is dealing with such an advanced stage of cancer. Usually, the Stage is determined after surgery but the results of the tests must be indicative. How treatable it is, will depend a great deal on the type of uterine cancer and the Grade (aggressiveness) of her cancer. The waiting is very difficult-- no answers, no information. The gyn-onc will be the most informative. Your mother is most likely quite fearful of what this all means and the most you can do is be there for her and be as supportive as you can. Feeding her a highly nutritious diet will help her stay in best condition for any upcoming treatment.

I was Stage IVb following surgery four years ago with an aggressive cancer, UPSC. I continue to be in treatment for recurrences but I am still here! With these diseases each case is unique and will follow a specific treatment plan which can include surgery, radiation, and/or chemotherapy - and this can be affected by any other health issues she may be dealing with.
Take care and let us know how she is doing.
Annie

Jules13
Posts: 17
Joined: Feb 2012

Thank you so much for your reply. Just to hear that you had an aggressive stage IV cancer and are still fighting four years later is inspiring and encouraging. My mother was told "3-6 months" 2 weeks ago and sent home with pain pills and that they would offer her no treatment because it was so far advanced. And all this, before they even did a biopsy. She wouldn't even see or talk to my sister and I for nearly a week she was so distraught.

The waiting is very hard. I have so many questions. I'm obsessed with research as my coping mechanism, which is why I'm on these boards.

What is so confusing is that it's in her legs. I can't seem to find anything on tumors in legs that originated in the uterus. I'm hoping and praying (a lot) that it's not an even worse sign.

Thanks again for your reply. I really appreciate it. I wish you all the best with your recovery. You sound like a very strong woman indeed.
Jules

ccfighter
Posts: 395
Joined: Jan 2012

Jules,
I am so sorry your mother is going through this. I will pray for your mother and your family. Though scans may seem ominous, know that there are treatment options to improve you mothers quality of life and ward off this terrible disease. Chemo would work systemically and radiation could shrink the tunors on her legs and give her mobility again, as well as pain reduction. Hormone therapy and surgeries are also options. Much of this depends on your mothers overall health and desire to kick this disease back. I am in treatment for cervical cancer that had mets to lymph nodes, not stage four, but advanced. I'm 33. Treatment is not so terrible. Fear is terrible. I have a friend who's in his 50's who is fighting stage 4 prostate cancer. When he was diagnosed he already had mets to his spine and lungs. They shrunk the spine mets with radiation so he could walk, and started him on hormone therapy. That was over a year ago. He just started chemo and more radiation for a tumor on his leg. Through this he still works and goes out and enjoys his life. Life is what you make it. With a good support system, your mom could go to battle with her cancer with good results. Never let a doctor tell you there's no hope. There always is. Best of luck. Take care.

Jules13
Posts: 17
Joined: Feb 2012

Thanks ccfighter, for the kind words. They are so helpful when everything seems so hopeless and scary sometimes. I do feel that mobility for my mother would be a game changer in many ways and pray for that for her. It hasn't even been a month since she's been so bad off. She was working up until then. She's okay otherwise (apart from the stress), it's just the pain in her leg that is making it so hard.

I wish you the best with your treatment. And your friend too. I love these inspiring stories and am amazed at how many strong, amazing people, like you, are out there are fighting. I mean, I knew, but I didn't know, if that makes sense. I look at people differently now, hopefully in a more empathetical way. You just never know what someone might be going through.

Karenhopeful
Posts: 38
Joined: Jan 2012

I might be different, but I have to share and I hate pain. In January I was told I had cancer in both lungs and a small tumor toward my intestines. When I started researching, before seeing the doctor, I assumed I was stage 4 with no hope. I went into a terrrible depression and that could be where your mother is right now. I knew a good attitude helps but I just couldn't find any hope. (this cancer is just a little molehill to step over in my eternal journey. Don't let it become a mountain and the only thing you see.) I finally bought two devotional books that helped me put this life into more perspective. I don't know if they might help your mother or not. The one I like best is Jesus Lives by Sarah Young. The other is called Finding Hope a daily devotional for women. My doctor told me I was figo 3, similar to my first cancer and I'd be around a long time. I do wonder if they said that just to give me a glimmer of hope, but it did help too. I'm not in as much pain as your mother, but I did have a lot of discomfort before I started chemo. I feel a little better now, one chemo down. I'd ask for surgery to improve her over all feeling by getting a little mobility back with her leg.

Jules13
Posts: 17
Joined: Feb 2012

Thanks Karenhopeful, I will check out those books. She is definitely still depressed right now. I think we are all in the stage where we are still grieving what we thought life was going to be like. She was due to retire at the end of March. We were so excited about being able to spend more fun times with her (grandkids especially!). We still don't know everything about her prognosis yet and so I'm still hoping for something good to come out of all of this. Hoping and praying. It's great to hear positive stories though, so thank you. I hope you too are feeling better these day and your doctor is right about you being around for a long time.

Aldonza
Posts: 4
Joined: Feb 2012

my sister was diagnosised as stage 3B in late 2010, and had radiation + 1 full courses of chemo. And PAT scan every 3 times of chemo - but it was a clean reports, and finished the chemo by last Aug. But a month later by sept, she had abdominal pain, and the doctor's attitude is pessimistic - and always asking if she wanted to try another trails of chemo but the success rate is as low as 35%. I think my sister is then discouraged and got depression , any suggestion - she had complaining about her pain, and she was originally an introvert, and now even more, any encouragement to share with me , I think cancer patient needs to learn how to cope with pain ? aldonza

california_artist
Posts: 851
Joined: Jan 2009

It's my understanding that most doctors do not want their patients to be in pain. Maybe some of the others here who have had pain can tell you what they have had experience with. Perhaps you could start a thread and ask for some input on the subject.

Best wishes,

Claudia

lindachico
Posts: 2
Joined: Nov 2011

First of all my prayers go out to your mother and to you. I cared for my mother several years after her 2 strokes and heart attack and I know how difficult it is when you mom is sick. Be sure to use the Caregiver Discussion Boards to help you.

According to my oncologist, I have widespread, advanced, aggressive high-grade Stage IVb endometrial adenocarcinoma with mets to abdomen, lung, liver and lymph system. I had a hysterectomy in January 2011 for bleeding due to very large fibroids (some the size of a softball). The pathologist misread his slides and called it hyperplasia atypia--totally missed that is was cancer. So I was sailing along just fine until August 2010 when my belly button started bleeding. My primary doc thought I'd scratched it, and when it started swelling and turning red that it was infected. Since the different antibiotics she tried didn't help, she sent me to a general surgeon to do a biopsy to see if it was an antibiotic-resistant infection. October 18 I went into the surgeon's office with an infection and came out with Stage IV cancer.

I was referred to a university cancer center. One of the professors of gyn oncology saw me, and basically patted my on the hand and said neither surgery nor radiation would be theraputic only pallative and chemo might or might not work. If the chemo worked, it would work well, but if it didn't I had 1 maybe 2 years. He made it sound like chemo was a crapshoot. When I left the room, I had lost all hope and felt like someone should be going in front of me calling out "Dead man walking."

Fortunately, he said that what little could be done for me could be done anywhere and referred me to an oncologist only 30 miles from my home. The best thing that ever happened to me! I keep hearing that my attitude is everything and it is, but so is having a doctor with a positive attitude. (So find an oncologist you can work with and doesn't take your hope away.) The new doctor laid out the same dismal diagnosis, and by the time I saw him the abdominal tumor (actaully in my umbilicus) poking out my belly button was 3.5 cm across and bleeding continually, and the full tumor was 5.5 cm. I also had a 3 cm tumor on my lung that was rubbing on my chest wall making every breath agony and of course I couldn't lie on that side to sleep.

I started chemo December 18 (two months after initial diagnosis--the waiting is awful!) with carboplatinum and Taxol. Had a near-fatal anaphylatic allergic reaction to the Taxol (2 days in CCU) so Taxol is out forever, and the oncologist added Adriamycin two weeks after my last radiation treatment. I had 15 radiation treatments to my umbilical tumor and 14 to my lung tumor.

I got the results of my CT scans yesterday after the radiation treatments, 3 rounds of carboplatinum and 2 rounds of Adriamycin. Thank the Lord, there is no evidence of the umbilical tumor at all, the lung tumor is greatly reduced (I can breathe normally and sleep on my right side) and the other tumors are smaller. My oncologist is very optimistic, as am I! We are going to continue chemo with scans after every second round.

Also, I have a very demanding job as the CFO of a large non-profit, and I've continued to work full time. I've only missed 6 days of work--the 4 days in the hospital from the Taxol reaction, the other 2 chemo infusion days. The fatigue is always there, but chemo treatments have come a long way. My doctor set me up with a nausea reduction protocal using three anti-nausea drugs and lasting as long as I need it, which for me is about 4 -5 days max. I'm still able to work, go to the grocery store, take care of my pets, do laundry. My fatigue increases with each round of chemo, so I hired a cleaning lady to save that energy, but other than that I've continued to carry on the life I had before my diagnosis--except that I go to bed and 8 p.m. and get up at 7 a.m. because of the fatigue.

I hope this helps a little. My biggest advice isto hold on to your hope and to make sure that you find a doctor that doesn't snatch it away.

Linda

lindachico
Posts: 2
Joined: Nov 2011

First of all my prayers go out to your mother and to you. I cared for my mother several years after her 2 strokes and heart attack and I know how difficult it is when you mom is sick. Be sure to use the Caregiver Discussion Boards to help you.

According to my oncologist, I have widespread, advanced, aggressive high-grade Stage IVb endometrial adenocarcinoma with mets to abdomen, lung, liver and lymph system. I had a hysterectomy in January 2011 for bleeding due to very large fibroids (some the size of a softball). The pathologist misread his slides and called it hyperplasia atypia--totally missed that is was cancer. So I was sailing along just fine until August 2010 when my belly button started bleeding. My primary doc thought I'd scratched it, and when it started swelling and turning red that it was infected. Since the different antibiotics she tried didn't help, she sent me to a general surgeon to do a biopsy to see if it was an antibiotic-resistant infection. October 18 I went into the surgeon's office with an infection and came out with Stage IV cancer.

I was referred to a university cancer center. One of the professors of gyn oncology saw me, and basically patted my on the hand and said neither surgery nor radiation would be theraputic only pallative and chemo might or might not work. If the chemo worked, it would work well, but if it didn't I had 1 maybe 2 years. He made it sound like chemo was a crapshoot. When I left the room, I had lost all hope and felt like someone should be going in front of me calling out "Dead man walking."

Fortunately, he said that what little could be done for me could be done anywhere and referred me to an oncologist only 30 miles from my home. The best thing that ever happened to me! I keep hearing that my attitude is everything and it is, but so is having a doctor with a positive attitude. (So find an oncologist you can work with and doesn't take your hope away.) The new doctor laid out the same dismal diagnosis, and by the time I saw him the abdominal tumor (actaully in my umbilicus) poking out my belly button was 3.5 cm across and bleeding continually, and the full tumor was 5.5 cm. I also had a 3 cm tumor on my lung that was rubbing on my chest wall making every breath agony and of course I couldn't lie on that side to sleep.

I started chemo December 18 (two months after initial diagnosis--the waiting is awful!) with carboplatinum and Taxol. Had a near-fatal anaphylatic allergic reaction to the Taxol (2 days in CCU) so Taxol is out forever, and the oncologist added Adriamycin two weeks after my last radiation treatment. I had 15 radiation treatments to my umbilical tumor and 14 to my lung tumor.

I got the results of my CT scans yesterday after the radiation treatments, 3 rounds of carboplatinum and 2 rounds of Adriamycin. Thank the Lord, there is no evidence of the umbilical tumor at all, the lung tumor is greatly reduced (I can breathe normally and sleep on my right side) and the other tumors are smaller. My oncologist is very optimistic, as am I! We are going to continue chemo with scans after every second round.

Also, I have a very demanding job as the CFO of a large non-profit, and I've continued to work full time. I've only missed 6 days of work--the 4 days in the hospital from the Taxol reaction, the other 2 chemo infusion days. The fatigue is always there, but chemo treatments have come a long way. My doctor set me up with a nausea reduction protocal using three anti-nausea drugs and lasting as long as I need it, which for me is about 4 -5 days max. I'm still able to work, go to the grocery store, take care of my pets, do laundry. My fatigue increases with each round of chemo, so I hired a cleaning lady to save that energy, but other than that I've continued to carry on the life I had before my diagnosis--except that I go to bed and 8 p.m. and get up at 7 a.m. because of the fatigue.

I hope this helps a little. My biggest advice isto hold on to your hope and to make sure that you find a doctor that doesn't snatch it away.

Linda

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

First of all, Linda, you are AMAZING. Your positivity just spoke to me BIG TIME. Working in a high pressure job with all this on your plate is a testimony to your strength. I hope you have a support network for you. And please reduce your stress which is a friend of cancer and disease. I eventually retired after getting SS Disability (you would probably be approved very quickly) but health insurance is a major concern.

Jules, I hope your mother will eventually be able to talk about it with someone. This forum has been so helpful to me (aggressive uterine papillary serous carcinoma). It sure does help to know that we are not alone and to talk to others who have been there. This is a very caring place.

I am going back to basics as I deal with recurrence #2 in 3 years. The book "Getting Well Again" by O. Carl Simonton talks about his work with late stage terminal cancer patients and the guided imagery techniques that helped many patients return to health and/or halt the cancer. And to supplement this I found Drs. Andrew Weil & Martin Rossman's guided imagery CDs to be very helpful (email me if you want more specifics). I am rereading and re-listening to these myself plus exercise and plant-based diet.

I wish us all a blessed and smooth journey. Mary Ann

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

First of all, Linda, you are AMAZING. Your positivity just spoke to me BIG TIME. Working in a high pressure job with all this on your plate is a testimony to your strength. I hope you have a support network for you. And please reduce your stress which is a friend of cancer and disease. I eventually retired after getting SS Disability (you would probably be approved very quickly) but health insurance is a major concern.

Jules, I hope your mother will eventually be able to talk about it with someone. This forum has been so helpful to me (aggressive uterine papillary serous carcinoma). It sure does help to know that we are not alone and to talk to others who have been there. This is a very caring place.

I am going back to basics as I deal with recurrence #2 in 3 years. The book "Getting Well Again" by O. Carl Simonton talks about his work with late stage terminal cancer patients and the guided imagery techniques that helped many patients return to health and/or halt the cancer. And to supplement this I found Drs. Andrew Weil & Martin Rossman's guided imagery CDs to be very helpful (email me if you want more specifics). I am rereading and re-listening to these myself plus exercise and plant-based diet.

I wish us all a blessed and smooth journey. Mary Ann

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