Stage IV and totally stressed

valleygirl · 10-15-2016, 04:20 PM

Stage IV is so stressful. I'm HER2 ER- PR-. I stress about what I should be eating. I stress about if I should continue to work. I stress about money, should I take the vacations now and use my savings or hold off, what if I live 10 years I'll need the money. I just saw on Facebook were a person with stage 4 had tumor marker of 31, then was dead 3 weeks later. How often does that happen? I've been stage 4 2 years now, so scary. If only I knew my future. How do you deal with the stress?

Ceesun · 10-16-2016, 07:53 AM

Valley Girl, I share your stress...believe me....but I try to live the best life I can and just pray for guidance a long the way. I also see many people with health situations worse than mine and tell myself if they can push on so can I. I have been stage four for 10 years now and though I have had my ups and downs, I would have missed a lot of the joy in my life if the stage four diagnosis stopped me in my tracks. I am sure you can push on and enjoy your life! As one of my nurses commented to me years ago, breast cancer is very unpredictable....and how! Love, Cathy

thinkpositive · 10-16-2016, 08:09 AM

Valleygirl,

Oh, if we only knew what the future was. Life is so precious and SO unpredictable. I recently lost my husband suddenly. He was perfectly fine one minute and dead the next. He was only 60 years old. When I was diagnosed with cancer I was so sure that I would die before him. However, that didn't happen.

If you are responding to treatment, you can look at this cancer as a chronic disease that needs continual care. However, it doesn't mean that you are on deaths doorstep. Managing the stress and finding effective coping mechanisms is really important. Continual stress isn't good for you. You might try yoga, meditation, visualization, walking, etc. anything that calms your mind. Find something that helps you cope with the stress.

As far as what you should be eating, the recommendations are no different for you than anybody else. You are ER/PR negative so you don't have concerns that those that are positive have in avoiding certain foods.

As far as working, taking vacations, spending money, I wouldn't let being stage 4 determine what you do as long as you are responding to treatment. None of us can see into the future and you can live many many years with this disease.

I hope that others chime in with some ideas and suggestions for you. I'll be sending positive thoughts your way.

Take care,
Brenda

MaineRottweilers · 10-16-2016, 10:03 AM

Constant stress and worry will do you more harm than good but it's difficult not to worry when faced with uncertainty.

Life is uncertain for everyone, healthy or otherwise, none of us knows what tomorrow will bring. It's important to live in the now. Take the vacation if you can afford it. Retire if you can afford it. Don't wait to do things if you can do them now.

I will share with you a few things that you may want to check into which could make those choices easier for you.

If you have life insurance, ask your company if they have an accelerated death benefit. They won't make it easy for you so be persistent. Your retirement plan may also have an option to draw penalty free in the face of terminal illness. Again, they won't make it easy for you. And, finally, if you have been in the workforce all your life and have been paying into social security, you may be able to collect disability. Many stage IV patients are able to.

I take each day as it comes. This is challenging for me because I am a planner. Instead of planning years out, I have been planning three months at a time. I've been taking those trips and making those purchases. I even plan to have a new puppy in January. I have plans and contigency plans. It satisfies my need to plan. My biggest plan is to out live my money.

I hope you are able to worry a little less and live a lot more.

tricia keegan · 10-16-2016, 01:09 PM

Valley girl, I'm not stage iv, but like Brenda we recently had a sudden death in the family of my brother in law who was fifty seven and in great health as far as we all knew. One minute he was here and the next gone and simply found in his chair unable to be woken. I don't have any advice as I'm not where you are obviously, but this sudden death has reminded all our family that nothing is guaranteed for anyone in life.I think if I was stage iv I'd nonetheless assume I was going to be in remission for a long time and live life on a positive note if that's not presumptive of me. .... Brenda sending my condolence's to you too.

thinkpositive · 10-16-2016, 10:10 PM

Thanks Tricia. I'm sorry for your loss as well. Gotta treasure each day for sure.

TiffanyS · 10-17-2016, 05:51 AM

Hi valleygirl, I am going through the same thing as you right now, so I know exactly how you feel. When I was first diagnosed, I was only stage 3, and was very positive that treatment would work, and that I would beat cancer! That changed once I was told that I had a recurrence and that it had spread to my lungs! Now, I live with constant anxiety. I worry non-stop that it has spread to my brain (I’m still waiting for a brain MRI) and that the new medication I’m taking will not work. I also wonder if I should continue to save for retirement, or just cash out now and go on a trip of a life-time, as I probably won’t be around for much longer. I love travelling and had to cancel a trip to Europe after I found out about my recurrence. I’m already planning two trips to Europe for next year, but I keep wondering if I’ll still be around to go on them. I spoke to my family doctor about this, and he advised that he will prescribe me Ativan if the anxiety doesn’t get better. Until then, I just try and stay busy in order to keep my mind off of my health situation. At least I feel good, which means I can continue to work and live life like I normally would. I don’t feel sick at all, and if I didn’t know I had cancer, I wouldn’t know there was anything wrong with me! I think the worst part about cancer is the not knowing, and I just keep reminding myself that there are people out there with stage 4 cancer who are still alive after 10 years. At least that gives me hope that I could still be alive in 10 years from now too!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer)
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. Also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
07/16 – First radiation treatment – 24 more to go!
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local reoccurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Take first CEA blood test to determine Tumour markers. Asked for PET scan, but am told I don’t qualify.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scare line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – Waiting for brain MRI to confirm that cancer has not spread to brain!

valleygirl · 10-17-2016, 01:48 PM

Sorry you're going through this to, it sucks. I'm forever second guessing everything I do. am I eating right, seeing the right doctors, should I start alternative treatments, keep working. I can't get away from it. I wish I knew what the future holds. Cancer really sucks

Bunty · 10-17-2016, 04:06 PM

Hi Valleygirl and TiffanyS

I hear, and totally understand your anxiety. When I was diagnosed Stage IV, (with three lung mets), I felt my world had collapsed. I was offered a voluntary redundancy from my job, as I believed I probably had a couple of years left, and figured the money would see me through. I had a lot of treatment in that 2 years, but I got stable, and then found that I needed to go back to work, as I was very well, and very happy to be living 'normal' again. So it's now 9 years since my Stage IV diagnosis, and even with a few ups and downs during that time, I'm well, and give thanks each day, and value how amazing life can be. However, stress can drag you down, so I think at the moment, find ways to try and manage that, either through medication, meditation, or psychological help. I feel trying to lead as normal a life as possible, with regular day to day activities, can help with grounding us when the 's&*t hits the fan'. A very quick stress stopper for me is to 'come to my senses' when my mind starts going to the wrong places - just focus on hearing, seeing, touching, to bring you back to a calmer place.

Marie x

hopingmind · 10-18-2016, 02:13 AM

I agree with you! Just see the good things in anything. Eliminate the negative ones. Stress could only add to your burden and it will only worsen the situation. Keep on praying and entrust everything to God.

Whonoze · 10-18-2016, 06:26 AM

I've been living with Stage IV since diagnosis almost 10 years ago. It is not a death sentence, and new treatments are being developed all the time.

So, focus on those of us Stage IVers that have done well and on all the great research that's going on now.

TiffanyS · 10-19-2016, 04:56 AM

Thanks everyone for the positive words! It’s very hopeful to know that there are people out there who are still alive and well 10 years after a stage 4 cancer diagnosis. I saw my doctor yesterday, and she gave me a prescription for ativan, in case I need it. I’m going to try not to take it though unless it’s necessary though. I also spoke to my social worker, who’s going to email me some different techniques to try when I have anxiety, and I have an appointment with the clinic’s psychiatrist on November 7. For me, the worst part is the not knowing. Once I know for sure that the Perjeta is working, I think I will feel more positive, although, I’m sure I’ll then start worrying about how long it will work. I guess the anxiety never ends for people like us! In the meantime, I am living my life as normally as possible. I still work full time, go out with friends, walk everywhere, and I’ve started meeting my card group again. I still haven’t gone back to the gym or playing badminton because the chemo is causing the arm where I had lymph nodes removed to stiffen up and it irritates me at times. This is normal, and once I stop taking the Taxol, it should get back to normal.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer)
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. Also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Stop Tamoxifen
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scare line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – Take first CEA blood test to determine tumour markers. Asked for PET scan, but am told I don’t qualify.
10/16 – Waiting for brain MRI to confirm that cancer has not spread to brain!
10/16 – Get results of CEA blood test, and it is normal (my results were 2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me!

Whonoze · 10-19-2016, 08:13 AM

Sounds like you're doing great!! Keep it up.

Mtngrl · 10-29-2016, 04:15 PM

The one thing we can control is our minds--what we choose to think about and focus on. I have found that becoming more skillful at not letting my fears control me has given me more of a sense of mastery and has helped in other areas of my life.

It's weird, but once I came to terms with the knowledge that I have a terminal illness I quit worrying about what's going to happen to me. The fact is I never knew what the future held for me, even before I got sick.

Cancer is not a "blessing" and it hasn't made me a better person. But I am different now than I was. I know I can't control the course of my disease, beyond showing up for treatments and managing side effects. I know there's no way to predict how much more time I have. I believe I can have a healthy, fulfilled, happy, meaningful life no matter what kind of condition my body is in. I am focusing on that.

The three best tools I know of for winning the mind game over cancer are denial, distraction, and mindfulness. The appropriate one to use at any given moment depends on the circumstances. They are all useful. Anything that resets my nervous system and interrupts the "fight/flight/freeze" response of my limbic system is helpful. That can be laughter, a good meal, meditation, a walk or bike ride, good sex, literally stopping and smelling the roses, and any number of other things. Thinking about something besides myself and my situation helps too. I am far too good at fretting and ruminating. It never resolves anything.

I journal. I do affirmations. I do guided imagery. I indulge in beauty of all kinds. I try to stay in the now, because right now nothing bad is happening. Worrying about the possibility that it will start happening does no good. It doesn't ward off the looming disaster, it just spoils this moment.

You can do this. It's the one thing you can do. Live as fully and gratefully and lovingly as possible, every chance you get.

Laurel · 10-30-2016, 06:35 AM

I am not stage IV, but I do know stress and uncertainty having been embroiled in a terrible family discord that has churned away for over 5 years now. I do suggest this: take vacations. You may whittle them down to skinny adventures financially, but the act of getting away with family or friends is important. We remember the good fun and relaxed atmospheres of vacations long after the event has passed. They are a time where we pause out of our busy, stressful lives and decompress. It is time well spent.

I am sorry you are in this endless turmoil and pray you live in the land of NED, as many of our Stage 4 gals have done, for years on end. Cancer and the fear of death is a specter, a shadow or pall, over our lives, but do try to find a way to LIVE the moments of your life. That is a tough task, I know, but worth embracing.

TiffanyS · 10-31-2016, 04:51 AM

I have been managing my anxiety much better lately, and while I do still have some anxiety, it’s not as bad as it was when I was first told that the cancer has spread. I seem to be getting better at distracting myself, and I’m able to focus on something other than cancer. That being said, I do still have anxiety when I start to think about what will happen if the Perjeta doesn’t work or if it only works for a short period of time. I know I have no control over this, and it will either work or it won’t, but I can’t help but think about it every once and a while. I’m just counting down the days until my next CT scan so that I will know if it’s working!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. Also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene.
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scare line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

MaineRottweilers · 11-01-2016, 06:12 AM

I hear exactly what you are saying and am impressed that it has taken you such a short while to adjust. You are highly adaptable, Brava!

We will spend our lives living in three month spans between scans. Good scan? Breath a sigh of relief and keep on trucking until the next scan.

I admire the hell out of the long timers. They are a tough group, mentally and physically. The uncertainty is very wearing and treatment, well that's tedious too.

Isn't cancerland grand?

TiffanyS · 11-01-2016, 07:34 AM

Thanks Tracy. I have never thought of myself as adaptable, but maybe I am. I guess people like us have no choice but to adapt to our new circumstances. Some days are better for me than others, but overall, I’m doing okay. Yesterday was a bad day for me, as I was experiencing shortness of breath and chest congestion. These are both common side-effects caused by treatment, however, I started wondering if it was the cancer causing these side-effects, and not the treatment, which lead me to believe that the treatment was not working, etc. I still have a little bit of chest congestion today, however, the shortness of breath has subsided, so I’m in better spirits . I guess I should get used to the ups and downs, as I don’t think they will be going away anytime soon.

I’m sure the anxiety never ceases around scan time, even for the people who have been doing this for years. I guess this is something we all have to get used to!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene.
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

SoCalGal · 11-09-2016, 05:36 PM

"All" I want is a good quality of life. Odds of me being alive in 10 years are slim, so I'm budgeting money based on those odds. I don't worry so much about the future, but I've been practicing this for 20 years since my original diagnosis. What I do fret about is NOT BEING ABLE TO DO THE THINGS I WANT TO DO. Oh, did I shout that, forgive me.

I think I am angry most of the time, more than anything. My anger comes from frustration at always feeling like I am WAITING to feel better so I can DO THE THINGS I WANT TO DO. Overall, and all things considered, I never expected to be okay for nearly 10 years of stage 4.

Rather than stress about all the things you listed, it might feel good to make a list of what you would like to do (change diet, or get input on alternative medicine, etc) and do one or two things on the list to see if they make a difference in your life.

It does take discipline to control your thoughts but there are many very good ways to work on that. It is a practice that becomes a habit.
I'm still mostly practicing...