Breast Cancer Monitoring

[Jim98027]

My wife is losing the battle.  She was treated aggressively seven years ago and then placed on Tamoxifin.  With HER2 cancer why are CT scans not required every six months?  By the time there was any physical indications, after five years of Tamoxifin, the cancer had metastasized throughout body.  But it never came back in the breast.  It attacked the muscle behind the breast, the left lung, liver and bones.
Abraxane/Herceptin   Tykerb/Zeloda  Navelbine/Herceptin had zero effect

[horses1016]

I am sorry about your wife. But I agree my aunt had bc 4 yrs ago and had a mastectomy. She was never scanned and now she has stage IV pancreatic cancer. It just looks like when someone has or had cancer they would have ct scans, mri's etc. Maybe someone should petittion Washington for more strict policies. Good Luck

[scaredwife]

I am so sorry about your wife. I agree with you completely! My former oncologist (he fired me because I missed an appointment) reviews my bloodwork results every 4 mos., but has never order a scan and I am taking Tamoxifen. My sister-in-law had breast cancer 5 yrs ago and she was taking Tamoxifen. She recently found out that the cancer had metastasized to her brain. It did not come back in her breast either. Her oncologist also only looked at her lab results for the past 5 yrs. and never ordered a scan. Another oncologist told her that she should have had scans every 6 mos or annually. Breast cancer follow up procedures should not be left up to the preference of the oncologist, but should be mandated by the ASCO.

[Jim98027]

I guess that is my point.  The treatment in the past did not sufficiently monitor an already aggressive type of cancer, HER2.  Being told the cancer is never cured but dormant should change some thinking based on today's findings.  If a body can resist Tamoxifen over time why would you not use scans?  Tumors under 1cm may not be detected but once an area enlarges beyond 1cm the only weapon is the scan.

[Cleveland Clinic]

Dear Jim98027:  Follow up for breast cancer is based upon the preferences of physicians as well as the specifics of the disease.  The ASCO (American Society of Clinical Oncology) guidelines do not recommend regular scanning for “screening” for metastasis.  Evidence suggests that scanning does not generally pick up metastatic disease early enough to change the course of treatment.   You may benefit from a discussion with your wife's oncologist.

[DaisyDuke06]

A related discussion, mixed up was started.

[af50]

Jim -- Thank you for your reply and for sharing your knowledge about Tamoxifen and Arimidex.  Your comments in general are very helpful.
God bless you and your wife.  

[af50]

Hi -- On the subject of Tamoxifen, it acts as a blocker to prevent the pass of estrogen.  The medicine has been in the market for 30 years.  Doctors consider administration of Tamoxifen depending on where the woman is at in terms of menopause.  If she is perimenopausal, that is if she is still producing estrogens, Tamoxifen is prescribed.  When in menopause or post-menopause, then Arimidex is preferred.  Arimidex is an estrogen inhibitor.  I feel comfortable with the idea of switching from Tamoxifen into Arimidex to get the benefit of both. Of course, each case is different and treatment these days is individualized, however, it is important to learn as much as we can to participate in the process.

As a preventive measure, I am considering removing my ovaries in two years, a simple laperoscopic procedure.  I say simple considering the general implications of bc.  Don't want to take any chances.

Meanwhile, I was told to focus on the right food.  My nutritionist emphasized on staying away from animal fat, no red meat, only skim milk, yogurt for calcium, no cheese, fiber is very important, it helps to eliminate estrogens and is good for many other things.  Lots of salmon (2 or 3 times a week), any other fish and chicken.  Seafood is OK once a week.  Seven to eight servings of vegetables and fruits.  Love berries.  Leafy vegetables spinach and khale are good.

As to PET scans and other imagery, they are important and should be part of the on-going treatments.

Hope this helps.  Good luck and my prayers are with you as well.

[lizziecee]

So very sorry to hear of your wife's spread but you sound a wonderful caring husband - she is very lucky to have you.

Regarding Arimidex, after a WLE,and  total axillary removal 5 yrs ago, I had 6 FEC chemo and 25 rads. During rads I was prescribed tamoxifen, took it for 2 months and my then Onc (discharged me after chemo and rads and since retired so I have no one now) switched me to Arimidex. He didn't explain why, and I didn't ask, as I had read that it gave a better prognosis than tamoxifen. I had had bone, chest and liver scans as I started chemo and no spread. I am intrigued as to your comment "Arimidex is usually prescribed after there has been some progress to suppress or reduce tumour growth." Here in the UK, the vast majority of patients with ER+ status, are prescribed an aromatose inhibitor, Arimidex or Aromasin, even without any spread to distant organs. Perhaps the protocol in the US is different.

However, the AI's are not without serious life limiting side effects. In particular they do not protect the bones as Tamoxifen does, and I now have osteopenia, requiring  a weekly  bisphosphonate, Alendronic Acid (Fosamax in the US), plus twice daily Calcichew/Vit.D.

After some 4 yrs on the AI the pain in my left hip, both feet and hands has become unbearable and my GP advised me to stop Arimidex for 3-4 weeks to see if the pain diminished.  It has thankfully, so I believe Arimidex was the culprit. I see him next week and hope he will refer me to a new female Oncologist at my hospital, who has an interest in both bc and gastro, as I have weekly injections of methotrexate for Crohn's. I am hoping she can prescribe tamoxifen, as this may give me the protection I need against bc spread, and prevent the osteopenia becoming osteoporosis. I had two spontaneous fractures in both feet last year, having to use a wheelchair, then crutches. A recent DEXA bone scan showed significant bone density loss since starting Arimidex - I had a baseline DEXA scan done before starting Arimidex, due to 30+ yrs of steroids for Crohn's, and this did show some bone loss, but nowhere near as much as taking Arimidex.

I, like others who have posted here, have always been concerned at the lack of scans we get on our socialised health service. When I have queried this with my bc surgeon, he said they will only order them if one has "symptoms". Pray, just what symptoms do we need to have before we get proper medical tests? I do worry about bone mets, having axillary spread, but no-one seems concerned except me, and my long suffering, wonderful caring husband.

Sorry this is so long - my prayers and thoughts are with you and your wife.
Liz in Cornwall, England.

It is a minefield for me at the moment, trying to figure out which meds I need the most.

[Jim98027]

Arimidex is usually prescribed after there has been some progress to suppress or reduce tumor growth.  Tamoxifen can become like aspirin in that the body can build up a tolerance and it becomes less effective. There are other better tests today than a mammogram.  They are usually only requested after something has been identified. In addition, when the lymph system has been compromised the breast and surrounding area, chest muscles and organs, need to have the same importance in assessment, scans can do that with bone, PET and CT.  If affected and found early all these new trials and combinations can be tried.  The promising note is new information and drugs are emerging daily in the fight against cancer.
Thanks for the comments and prayers
jim

[LoveRN]

My heart goes out to you and your wife. From a personal perspective, I say all patients should be asking for ct scans every 6 months in addition to labs. Breats cancer does not always follow a pattern and each patient is individualized. I remember for about 3 years I was never offered any scans just labs. Afterdiscussing with a close friend I asked for pet scan and then continued having same on an annual basis.
After 8 years it has returnedto ny spine and I havegone through more radiation,chemotherapy.  Currently taking Xeloda and will  be checking tumor markersi n about a week.

I would say to your wife,,, fight...fight fight..... do not give up. Ask for all options available. There is so much available in terms of clinical trials. Besides God has aplan for your wife and I will add her to my prayer list.

P U  S H means Pray Until Something Happens.

In Christ

Maggie

[af50]

Hi Jim, I am sorry about your wife. I just finished with chemo and radiation therapies and want to share my experience.  I am scheduled for follow-up mammograms every six months, and MRI on a yearly basis.  After the lumpectomy and right before the chemo, I requested a PET CT scan, for peace of mind.  It was not offered to me, I requested it.  There was no sign of malignancy in any other part of the body.  As far as the MRI is concerned, one of my doctors told me that the MRI catches only 3% of missed mammograms.  

With respect to hormonal therapies that suppress or block the action of estrogen, there is a study called ATAC (Arimidex, Tamoxifen, Alone or in Combination).  Updated results were presented at the latest San Antonio Breast Cancer Symposium (December 2007). I read about it in the Women & Cancer Magazine (Spring 2008, pg. 88).  I suggest those undergoing hormonal therapy to look into the convenience of combining the medicine, to benefit from both of them.  When you read more about ATAC, you will be in a better position to discuss the alternatives with your oncologyst.

Jim, my prayers are with you and your wife.

[AnnaE]

I am so sorry for the grief of everyone who has wriiten here. I recently lost most vision in one eye, so I know a lot about grief and shock. However, your losses are profound. I wish you and your loved ones all the comfort and support possible

The worst part of my experience was lack of support, from medical caretakers, and friends and family. Ithis was also traumatic.I hope your situation is far better. Reach out to people, if you are up to it.

[HazelLynn]

Hi Jim,  I just want to say that I am so sorry about your wife.  I read your post and it broke my heart and I am sorry for you both.  I lost my mum to breast cancer that invaded her, and I have just had a mastectomy and its terrifying and so frustrating and it seems that everyone on these posts, myself included are  not being told everything and not being given everything that we should be given to treat us.  I just want to send you both my wishes and prayers