Early Stage Her2+++ and the questions on CT scans

fondue · July 2017

Hi, I am new to the community and this is my first post. I am sorry if I missed the earlier discussions on the similar issues and repeating them. Also I am not sure if it is right place (forum) to ask these questions. I will try to be as brief as possible.

I was firstly dx as Stage 0 BC (DCIS) in late May by a needle biopsy and after several consultancies, I ended up with mastectomy of my right breast on June 15, 2017. My final pathology after surgery came as Stage I IDC together with DCIS (with 9 mm invasive area), ER- PR- HER2+++ with all nodes clear (0/6), no lymphovascular invasion.

Because of these specific characteristics of my tumor, adjuvant chemotherapy (12 weekly Taxol) and Herceptin was offered for me as a standard of care. My weekly infusion will hopefully start on July 25, 2017.

Last week, my MO requested a PET Scan before starting the adjuvant therapy. I was surprised as I know it is not a standard for early stages. I asked what would be the benefit of such screening in my case. The answer of MO was not satisfactory for me at all while she stated that they would probably find nothing with my given conditions; but they offer these scans to be on the safe side, since my type of tumor is considered to be aggressive although the size of it is too small. Because of my concerns related to high radiation exposure, I stated that I do not want any PET CT at the moment. Then she recommended Chest and Whole Abdominal CT. Then I could not resist at that moment.

After coming back home from hospital, I searched for the possible radiation exposure from all these scans and found out that even the radiation dose of abdominal CT is too high. I called a friend of mine who is a radiation oncologist to ask about it. She is from one of the most reputable medical academies and the hospitals of my country (I am from and living in Turkey). She said that they usually do not do any PET or other CT scans for the early stage patients like me before starting adjuvant chemo in their oncology hospital. They usually have ultrasound screening of abdominal and lung scintigraphy. She also stated PET and other CT screening in early stages is not an international standard, but some MOs may want it.

I am very confused at this point. Having many many family members died of or survived from different cancers (including my mom died of endometrium cancer at the age of 54, maternal uncle died of lung cancer, paternal aunt and cousin having metastatic breast cancer and many other close relatives survived from colorectal, thyroid, breast etc.), I think I might have a genetic risk of developing any kind of cancer in the long run (I am 41 yo at the moment). So, why should I increase this risk by getting high amount of radiation to my body, if it is not certainly necessary or a standard with my diagnosis?

I would really appreciate the comments and experiences of the ones especially having similar dx and treatment.

Many thanks in advance.

ElaineTherese · July 2017

Hi!

I am triple positive (ER+/PR+/HER2+) and was diagnosed at Stage IIIA. My lump was bigger than 5 cm, and one node tested positive for cancer. I was Grade 3. My oncologist ordered a PET scan for me to make sure that my cancer was only locally advanced and that it hadn't spread to other parts of my body.

Yes, there is radiation exposure from PET scans, and I do think that is a factor to consider when assenting to them. However, it is a relatively small amount, and PET scans can be very informative. For example, if my PET scan had showed that I had distant metastasis (mets to the bones, liver, lungs, etc.), my whole treatment trajectory would have been different.

I'm not quite sure why your oncologist wants you scanned when you are Stage I and have no nodal involvement. However, patients with ER-/PR-/HER2+ have slightly worse outcomes than patients with triple positive, so maybe your oncologist considers your cancer to be particularly aggressive (?).

In any case, you are perfectly within your rights to refuse a PET scan, CT scan, or any other scan if you are concerned about the radiation involved. They are probably unnecessary at this point in your treatment, and might be better saved for another time (like if you suspect you DO have distant mets).

Best wishes! I hope your chemo goes well.

NotVeryBrave · July 2017

Tests by the radiation dose

Just one CT scan of the abdomen and pelvis equals about 10 millisieverts, more radiation than most residents of Fukushima, Japan, absorbed after the Fukushima Daiichi nuclear power plant accident in 2011.

Procedure	Radiation dose (millisievert) 1, 2	Comparable exposure from natural sources, such as radon	Should you get it?
Minimal dose: Less than 0.1 millivert
X-ray of teeth (bitewing)	0.005	less than 1 day	Most people need one only every 24 to 36 months.
X-ray of teeth (full mouth)	0.010	about 1 day	Many people can go a decade between exams.
Cone-beam CT of jaw and teeth	0.06	7 days	Rarely needed for most orthodontic procedures.
Low dose: 0.1 to 1 millivert
X-ray of chest (two views)	0.1	12 days	Presurgery X-rays needed only for people with a history of lung or heart disease (or those at risk) or before chest surgery.
Mammogram	0.4	7 weeks	Needed every two years for women ages 50 to 74.
Medium dose: 1 to 10 milliverts
X-ray of spine	1.5	6 months	Rarely needed in first month back pain.
CT of head	2	8 months	Not needed for most head injuries. CTs usually aren't needed for a concussion.
CT of spine	6	2 years	Rarely needed in first month of back pain.
High dose: 10 milliverts and over
CT colonoscopy	10	3 years	Not as accurate as standard colonoscopy.
CT of abdomen and pelvis	10	3 years	For possible appendicitis or kidney stone, ask whether ultrasound can be used.
CT angiography (of the heart)	12	4 years	1 in every 1,300 60-year-olds may get cancer as a result, so it probably shouldn't be used for screening.
CT of abdomen and pelvis repeated with and without contrast	20	7 years	"Double scans" are rarely necessary; fewer than 5 percent of patients should receive one.
PET with CT	25	8 years	It exposes patients to very high radiation doses, so make sure that it is really necessary.

1. Doses are typical values for an average-sized adult. The actual dose can vary substantially depending on a person's size as well as on differences in imaging. 2. For every 2,000 people exposed to 10 millisieverts of radiation from a ct scan, one will develop cancer, according to the Food and Drug Administration.

Editor's Note:

This article also appeared in the March 2015 issue of Consumer Reports magazine.

NotVeryBrave · July 2017

Sorry about that - I was trying to copy and paste a table that I found through Consumer Reports about the amount of radiation from various procedures. For each item - the first number is the number of milliverts (radiation) exposure, the second number is how many days/weeks/months/years it would take for you to be exposed to that much radiation in the natural environment.

The article that it came from noted that there are differences in how various tissues respond to radiation and any risk of cancer due to radiation is generally small and probably wouldn't show up for 10-25 years. That's why it's hard to know if it actually occurs due to scans.

Bottom line is that scans should be used only when necessary. Like most things - when the benefit outweighs the risk.

I personally have not had any CT or PET scans. I asked about them and was told they would only be ordered if I showed symptoms of possible mets.

fondue · July 2017

Thanks a lot for your replies ladies.

NotVeryBrave, the amount of radiation exposure indicated for each is too scary for me. Thank you for sharing. I received similar info from other sources as well.

I re-consulted my MO yesterday. She is insisting on having either PET or CT. She says that being hormone negative and her2 positive with ki67 index 35 % is not a good prognosis, despite its stage.

I am not sure what to do. I may change my oncologist and center after having some more search on that.

Best,

ElaineTherese · July 2017

fondue,

Yes, it may be time to visit another oncologist, someone who will respect your wishes. Yes, you have a relatively aggressive form of breast cancer, but it's small and there's not any evidence of metastasis to distant places. Good luck!!!

BellasMomToo · July 2017

fondue: I had a similar dx (ER-, PR-, Her2+), but my tumor was larger (over 2 cm). And my Ki-67 is much higher: 70%. I only had a breast MRI before my chemo started. My MO didn't/hasn't recommended a PET scan or CT scan because there is no reason to believe that my cancer has spread (SNB was negative). And although my Ki -67 is high (70%), my MO isn't concerned about it.

I have mixed feelings. Sometimes I wish I had additional scans to see if my cancer spread or if I have other cancers in other areas. But other times I'm glad I didn't have additional scans (cause of the add'l radiation and scan-anxiety).

Perhaps with your family history of cancer, your MO is looking for other cancers?

Aquarian · July 2017

Hi Fondue

I have a very similar diagnosis to yours. I am on weekly Taxol/3 weekly Herceptin and doing well. I was not offered a PET scan due to such an early stage and SNB neg. With your Family History I strongly urge you to do genetic testing for familial cancer , if you have not already done so.You may be at risk of other cancers which can be minimised with prophylactic surgery. Good luck

FourFour3 · March 2018

I was wondering if anyone else is having severe side effects from Anasterzole that I take daily almost two years after treatment and radiation for Her2+. Is there side effects to stop this drug suddenly as I am afraid I'll end up in a wheelchair with joint pain, need right hip surgery due to necrosis.

Thanks

Early Stage Her2+++ and the questions on CT scans

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Tests by the radiation dose

Procedure

Radiation dose (millisievert) 1, 2

Comparable exposure from natural sources, such as radon

Should you get it?

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