How Often Do You Go For Scans?

[TiffanyS]

My doctor has advised that she will be sending me for CT scans every three months, in order to determine if the Perjeta is working. Once we know that the Perjeta is working though, and I am “stable” she will only be sending me for scans every six months which doesn’t seem often enough to me. She advised that she will still be taking a CEA blood test every month, and if my numbers go up, she will then send me for a scan, however, as some people never have elevated CEA levels, this doesn’t seem reliable to me. I am wondering how often those of you who are NED go for scans? Is six months the norm? I’m fine with going for a bone scan every six months, as my cancer has not spread to my bones, however, I feel like I need the CT scan more often in order to determine if the tumours on my scar line and the nodules on my lungs have come back (assuming that the Perjeta works and they shrink to begin with). I would love to go for a PET scan as well, however, I was told that I don’t qualify for one, and my doctor doesn’t think it’s necessary. She says she can see what she needs to see with the CT scan. I’m also still waiting for my first brain MRI to see if the cancer has spread to my brain. My doctor doesn’t think it has, however, I would like to know for sure!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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!
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

[Mtngrl]

Dear Tiffany,

I have a friend who's been NED in the body for a number of years. She had brain mets, too; she just gets brain MRIs. She doesn't want to keep getting zapped with radiation in her torso, so she's waiting until she has symptoms before agreeing to another scan of her body.

This may seem nuts to you. But think about it. Any drug that is effective on a little cancer will be effective on a lot. There's actually no overall survival benefit to treating mets "early."

You will find that scans are anxiety-provoking. The time leading up to the scan and then the time waiting for results is very difficult, even for us old-timers. On balance, many people find it easier to just get on with their lives between scans. If you get to NED and stay stable, believe it or not you'll be able to focus on other things besides your diagnosis. This, I think, is healthy. Denial is an under-appreciated tool for those living with stage IV cancer.

You have a very organized, pro-active approach to this. Good for you. It sounds like you're getting excellent care. Herceptin and Perjeta as a first line treatment for metastatic HER+ breast cancer can be very effective. I have a friend who's been on that (plus a hormone treatment, since she's also ER+) for four or five years now.

I haven't had a scan since May--AND I changed treatment in June. That's a little long, but now I'm waiting for the radiation treatment to my right lung to "settle down," so it may be another 6 weeks or so. Once I do get a scan, if it shows new lesions we'll figure out something else to try.

Eat well, rest well, go for walks, laugh, color, listen to music, listen to affirmations, calm your mind. Don't worry about anything until you have to.

All the best,

[TiffanyS]

Thanks Amy. I see the logic in not going for scans too often, but for me, it’s the not knowing that I’m finding difficult to deal with. Once I know that the Perjeta is working, and I’m stable, I may start to feel less anxious. Of course, I’ll probably then start wondering for how long the medication will work! I never seems to end.

I’m glad to hear that your friend has been taking the Herceptin and Perjeta for five years and is still doing well. I hope that the medication works that long for me as well!

I hope the radiation treatment to your right lung has worked for you. I read your foot-notes, and it seems like the last five years have been a constant battle for you.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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!
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

[Juls]

I was on a trial of Perjeta until December of last year. The trial protocol was 9 weekly Ct's. If I am honest 9 weekly was too much. Sometimes it was only 8 weeks between!
I am now on 3 or 6 monthly scans depending on report. This is much easier.
6 months seem to be the normal here (UK)

Great advice Amy!
I remember another post that you said "any drug effective on a little cancer will be effective on a lot" It's stuck with me!
Thanks
Juls

[TiffanyS]

Thanks Juls. I guess six months is the norm. Every eight to nine weeks does seem like a lot. It must get tiring going for scans that often.

On another note, how did you do on the trial? Did the Perjeta work for you?

­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­
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 – 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!
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

[Juls]

Hi
Perjeta worked for me for about 2 1/2 years.
2 ladies still on trial out of 15. One for 2 1/2 yrs and one 4 years.
I was really lucky to get Perjeta here.
All reports I've heard/read about Perjeta have been good.
I am Her2+ and strongly ER+ & PR + as well. Now on Xeloda, Herceptin and Zometa. So far ok.
We don't get CEA markers done here - One less to worry about!!"

Take care
Juls

[TiffanyS]

Two and a half years is better than nothing! My nurse practitioner told me that out of the people who participated in the Cleopatra trial at my hospital, one women is still taking the Perjeta, and has been stable for 5 years. She told me that on average, it worked for about two years for most of the other people in the trial.

When I was diagnosed with breast cancer, I was told that I had locally advanced breast cancer and that I was HER 2 Positive, stage 3, grade 2 (I was told after surgery that I was actually grade 3, and should have done chemo before surgery). I wasn’t given any other information, and I’m not sure what you mean by “and strongly ER+ & PR +”. I’ll have to look into this and see what it means.

­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­
­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­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!
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

[Juls]

Hi
Estrogen positive and progesterone positive.

2 years is mentioned a lot so 2 1/2 years not too bad!!

I was stage 3 when 1st diagnosed. Never given a grade! Had lumpectomy 1st and 6/20 nodes involved. They didn't think nodes involved. I only recently found out that I should have had chemo first. Didn't get any treatment after op for 3+ months either. Fortunately got removed from local hospital to do trial so treatment better since.
Wish I had been better informed at the start.

Juls

[TiffanyS]

Thanks Jules. Now that I think about it, I was told that they found a large amount of estrogen and progesterone when they diagnosed me, and I think I am both estrogen positive and progesterone positive as well. I will double check when I see my doctor next though.

I’m surprised it took three months for you to get treatment after surgery. I started chemo six weeks after surgery, and was given the standard treatment of Carboplatin, Docetaxal and Herceptin Unfortunately, I was unable to get the Docetaxal during my second treatment, as the enzymes on my liver were high, and my doctor believes that is the reason why I had a local recurrence. I did get the Docetaxal during chemos 3-6, however, I only got 50-75% of the usual dosage.

I am glad that you got removed from the hospital and put into a trial. At least you got better treatment once you were put into the trial.

I think we all wish we were better informed from the start, however, we all tend to trust our doctors, at least at the beginning. I knew very little about breast cancer or cancer treatment when I was first diagnosed, and I still don’t know as much as I should. Even my doctors disagree regarding my treatment. When I was first told about my recurrence, my radiation oncology team told me I’d have to have rush surgery, followed by more radiation, however, my oncologist said no to further radiation, and didn’t even want me to have surgery. My surgeon defers to them regarding treatment, but told me he’d be open to surgery again if the Perjeta doesn’t work. I find it very confusing at times, as all three doctors have a different opinion regarding my diagnosis and treatment plan.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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 – 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!
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

[Juls]

I have to admit I don't fully trust my Onc team anymore. Sad but true!
Someone on this site said :-
Remember
Radiologists want to do radiation
Surgeons want to cut
&
Oncologists want to do Chemo
Wish they would ask the patient!!
Juls

[TiffanyS]

I’m sorry you don’t trust your oncology team anymore. Are you able to go somewhere else? I believe you have socialized medicine in the UK, which may make transferring to a new clinic or hospital difficult. I live in Canada, and after my surgery, I asked to be transferred to a different hospital, and was told that it would be difficult because there is a shortage of oncologists, and once you meet an oncologist, you are deemed to already have one, and the other hospitals wouldn’t take me. I finally got transferred because my radiation oncologist pulled some strings for me. If it wasn’t for him, I’d still be at the original hospital. My oncologist and radiation oncologist seem to disagree about a few things, even though they are friends and work closely together. My surgeon tends to agree with my oncologist, but is open to surgery if I ask for it. Right now, I’m following my oncologist’s advice, but I’m glad to know that my surgeon is open to surgery if I feel the need for it down the road.

­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­
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 – 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!
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

[Juls]

Unfortunately not easy to do here.
You are assigned a Consultant but you don't see them at every appt. Not a complaint - just the way it is.
The only reason I got out of local hospital was that the Oncologist, who saw me 3 months after my op, was not happy with the way I had been treated & he went out of his way to get me on a trial at his main hospital.
Unfortunately he is at local hospital on the day I am at the City Hosp., so I haven't seen him for over 3 years! A pity because I liked him!
I could move back there but would have to leave a great nursing team. They are the reason I stay. My Nurse Practitioner is the nurse that the staff want if they are patients!

I have had a few problems with tests etc and lack of info. This week I saw another Oncologist who let me see my Ct report and x -rays. This is only the 4th time in 3 1/2 years. When I mentioned that I found this interesting and informative. Her reply "Maybe we should ask patients if they want to see reports & not assume all patients don't want or can't handle this!"
Seems sensible to me !!

Juls

[TiffanyS]

I’m sorry you can’t find a new oncologist Juls, but at least you like your nurse practitioner.

My surgeon has always showed me my test results and images, and has even pointed out what he was looking at when I couldn’t see what he was seeing. My oncologist has not shown me anything, and will only give me a copy of my blood work if I ask for it. I have only asked for it a few times though, as I don’t understand what it means half of the time. I can get a copy of my CD, with all of my images on it, however, if I want it for myself, I have to pay for it. On another note, I got a call from the hospital around 4:00 p.m. yesterday, telling me that they had a cancellation for a brain MRI, and that they could fit me in at 8:30 p.m. that evening. I’ve been feeling a little anxious since I took the test, as I’m scared of getting more bad news, i.e., the cancer has spread to my brain! I should get the results when I’m at the hospitable tomorrow for treatment, and I’m hoping for some good news for a change!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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 – 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!
10/16 – Brain MRI – Waiting for results!
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

[Juls]

Hi

it's good that you see your Ct/test reports. I think information is power! Sometimes you would think info here is "top secret"!
I have been writing down all my blood results since March. Again I feel this helpful for me. So far other than Bilirubin high they are good. Bilirubin is high because of Xeloda & is a known side effect. I found this out myself by doing some research. Oncology team never mentioned this. When I commented to my Nurse about high Bilirubin she was surprised that I knew about this side effect. Her reply " you're giving me a hard time with all your research".

I have just had a CT where the team panicked about a mark on my femur. They wanted me in hospital that night for op next day. When I told them I was not at home - they called Ortho Surgeon who said no imminent danger and that they would see me in a few days at local clinic. When I saw Ortho last Tuesday he confirmed no imminent danger & couldn't understand the panic. Unnecessary stress for all!! Only good point was that I got CT report within a day!!

I know the anxious feeling well when waiting for test results. Sometimes reports take 3 weeks here!!

Fingers crossed for good results tomorrow.

Take care
Juls

[TiffanyS]

I also received some good news when I was at the hospital for treatment yesterday. On Sunday, I got a call from the hospital telling me that they had an opening that evening for a brain MRI, which I went to. I got the results yesterday, and there is no evidence of disease, which means the cancer has not spread to my brain! Getting this news has been a tremendous relief to me, as I was really worried that the cancer had spread to my brain. That being said, I will have to go for brain MRI's, along with bone scans, ultrasounds and CT scans every 6 months for the rest of my life, just to be sure the cancer has not spread. At least for now, everything is looking good. Now, I just need to wait until my next CT scan on November 22 in order to find out if the new medication is working. Until then, I'm keeping busy, and looking forward to going to a Halloween party this weekend!

­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­
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 – Take first CEA blood test to determine Tumour markers. Asked for PET scan, but am told I don’t qualify.
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!
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!

[Juls]

Hi
That's great news Tiffany.
Enjoy the party!!
Take care
Julie

[MaineRottweilers]

Always a big sigh of relief when you're told your brain is OK.

[TiffanyS]

It sure is Tracy! Now, I’m hoping for some good news after my CT Scan on November 22!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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!

[Carol Ann]

YAY Tiffany for the news! What a relief.

Have a great weekend and time at the Halloween party!

Carol Ann