breastfeeding after RAI uptake

[Guest guest]

ok here is a good question. I had 100mci of I 131 and was told that

I would have to stop nursing my son in order to get treatment. I

weaned him almost a month ago and had my treatment 2 weeks ago. My

new endo told me that I could of kept on nursing up till treatment

and stopped for a short time and then restart. So question is how

many of you have been in the same boat and how did you do it. I

really want to try to get my milk back. The Leche League said that

could help me get my milk flowing again. I have a call into my endo

to see how long I have to wait before restarting, but I would like to

hear about other mothers that have gone through this and how they

handled the fear of passing I131 through the milk to the baby. Please

email me back at zulyooly@...

Yuly

Pap & foll mixed

TT 6/14/03 Merced, CA

RAI 8/7/03 UCSF, CA

[Guest guest]

Here is info from Dr. Ain regarding breastfeeding. This info can be

found in the FILES section:

Subject: RAI/Breastfeeding

(combined letters from Dr. Ain)

It is criticallyimportant to totally terminate breast feeding prior to

any radioactive iodine scanning or treatment dose. The radiokinetics

of radioactive iodine would not permit breastfeeding for at least 60

days in order to avoid destroying the baby's thyroid gland or causing

thyroid cancer in the baby. There is no sense to continue lactation,

discarding the milk, and resuming more than 2 months later

since the baby would already be weaned from breast feeding.

This is not just a recommendation. It is a necessity.

I do not believe that any nuclear medicine facility would knowingly

administer any radioactive iodine to any woman who is intending to

continue breast feeding. This does not apply to later pregnancies,

provided that there is no need for further scanning and therapy.

As a practical guideline, women thyroid cancer patients should tend to

avoid breastfeeding their children if there is any reasonable chance

that they would need to receive radiopharmaceuticals at anytime while

breastfeeding.

[...and...]

Subject: No breast feeding while I-123 or I-131 scanning.

Dear ThyCa Members

It is one of my principles of thyroid cancer management to not do

radioiodine scans on a patient unless I am prepared to give a

radioiodine treatment if the scan is positive. For that reason, it is

unreasonable to continue breast feeding while preparing for such a

scan, whether using I-123 or I-131, because only I-131 is useful for

treatment of thyroid cancer. The time it would take to clear the

radioactivity from a lactating breast, sufficient to resume breast

feeding is so long as to make weaning or avoidance of initiating

breast feeding a necessity.

> ok here is a good question. I had 100mci of I 131 and was told that

> I would have to stop nursing my son in order to get treatment. I

> weaned him almost a month ago and had my treatment 2 weeks ago. My

> new endo told me that I could of kept on nursing up till treatment

> and stopped for a short time and then restart. So question is how

> many of you have been in the same boat and how did you do it. I

> really want to try to get my milk back. The Leche League said that

> could help me get my milk flowing again. I have a call into my endo

> to see how long I have to wait before restarting, but I would like to

> hear about other mothers that have gone through this and how they

> handled the fear of passing I131 through the milk to the baby. Please

> email me back at zulyooly@y...

> Yuly

> Pap & foll mixed

> TT 6/14/03 Merced, CA

> RAI 8/7/03 UCSF, CA

[Guest guest]

In a message dated 8/21/03 1:47:21 PM Eastern Daylight Time,

zulyooly@... writes:

> ok here is a good question. I had 100mci of I 131 and was told that

> I would have to stop nursing my son in order to get treatment. I

> weaned him almost a month ago and had my treatment 2 weeks ago. My

> new endo told me that I could of kept on nursing up till treatment

> and stopped for a short time and then restart. So question is how

> many of you have been in the same boat and how did you do it. I

> really want to try to get my milk back. The Leche League said that

> could help me get my milk flowing again. I have a call into my endo

> to see how long I have to wait before restarting, but I would like to

> hear about other mothers that have gone through this and how they

> handled the fear of passing I131 through the milk to the baby. Please

> email me back at zulyooly@...

> Yuly

All of the research I have found has said you must not nurse for 90 days.

Before that your milk will be radioactive and you will be passing that on to

your baby. I delayed receiving RAI for several months so I could continue to

nurse my daughter as long as possible. I was sad to have to stop nursing before

my daughter chose to wean herself. My other 2 kids nursed until they were

ready to stop, but my last had to be weaned so I could get RAI. Remember the

reason you stopped nursing. To take care of your health so you can be around

and

in your child's life for many years to come. You want the best for your

baby. I wouldn't do anything that had the remotest chance of harming my child,

and I'm sure you wouldn't either. Despite your desire to resume nursing I

wouldn't even consider it if I were you.

Feel free to email me if you want, and good luck to you and your baby!

~Kim in NJ

pap ca 3.9 cm

TT 1/8/02

RAI 7/2/02

clean scan 7/24/03!!!!!!

[Guest guest]

> ok here is a good question. I had 100mci of I 131 and was told

that

> I would have to stop nursing my son in order to get treatment. I

> weaned him almost a month ago and had my treatment 2 weeks ago. My

> new endo told me that I could of kept on nursing up till treatment

> and stopped for a short time and then restart. So question is how

> many of you have been in the same boat and how did you do it. I

> really want to try to get my milk back. The Leche League said that

> could help me get my milk flowing again. I have a call into my endo

> to see how long I have to wait before restarting, but I would like

to

> hear about other mothers that have gone through this and how they

> handled the fear of passing I131 through the milk to the baby.

Please

> email me back at zulyooly@y...

> Yuly

> Pap & foll mixed

> TT 6/14/03 Merced, CA

> RAI 8/7/03 UCSF, CA

Hi, Yuly,

I was diagnosed 2 months with papillary post-partum in 2000 so I

understand the question you're asking. I did a lot of research,

including talking with a number of different people from LLL and

other places. We were looking to see if I could pump throughout the

entire thing (dumping the milk) and at some point resume.

Since I-131 has a half-life of 8 days, and the protocol for it being

undetectable is 10 half-lives, that means a minimum of 80 days. I

talked with two ladies who pumped, dumped and later resumed

breastfeeding. Both waited until after 80 days. One of the ladies did

this back in the early 90's and even took breastmilk samples to the

hospital where they geigercountered it. The other lady said that her

child never would go back to the actual nursing, but would take the

milk in a cup.

Obviously, this is your life, and your child. But, even as a card-

carrying member of LaLeche League with multiple food allergies in our

family, I had to admit defeat with the concept of going through all

that radiation entails, plus the getting your Synthroid level right

after (that took 5 months for me), AND deal with trying to maintain a

milk supply (radioactive, no less!). Also, my baby nursed last about

a week before the initial scan dose and then the next week I had a

treatment dose of 29.9. I can attest that iodine goes into lactating

breast tissue. IT HURT LIKE ....!

So, realistically, if you want to not pass the radiation onto your

kid, you have to wait AT LEAST 80 days. By that time your baby will

be many months older and may or may not cooperate with going back to

nursing.

Is it do-able? Well, it's certain something you could attempt if you

wanted. I don't think it's guaranteed to work, though.

Sorry not to be more optomistic,

Kathy W.

dx 6/00 papillary 2 months post-partum

tt 7/00

RAI 29.9 8/00 post-treatment scan showing uptake just in thyroid bed

scan 8/01 showing 'significantly less' uptake in thyroid bed

thyrogen scan 7/02 still less uptake in thyroid bed

5/03 bone density scan showing osteoprenia

[Guest guest]

Kathy and Yuly

There are a couple of errors here that need correcting, in case they

later become 'fact'.

Ten half lives is a convenient rule of thumb for decaying radioactive

waste. It is not an absolute, a 'safety limit' or anything more than a

rule of thumb. After 10 half lives, the amount of radioactivity is

reduced by a factor of 1000. This does not make it 'safe', it just makes

it 1000 times safer. Safety is NOT black and white, it is always various

shades of grey.

An 80 day delay in resuming breast feeding mis-represents the facts.

There are two different half-lives at work here. The first is the 8 days

that is intrinsic to 131I, the second is the rade at which you excrete

iodine from your system - usually somewhere between 6 and 12 hours.

Erring on the cautious side, I would go for 20 half lives (a reduction

of 1,000,000 in radioactivity) and I would choose the longest half life

- 12 hours. This calculates out at 20 * 12 hours = 10 days. Decay works

on top of this in your favour as well.

Is that the whole picture? Not quite. There are other half lives

present, notably the residence time of any RAI that has been taken up in

residual thyroid tissue.

If you were to ask me for a definitive statement on this I would state

that " From a radiation protection perspective only, I would advise that

expressed milk be counted in a well-type scintillation counter for the

presence of 131I from day 10 onwards. Once the amount of 131I has

dropped to background levels a further safety margin delay of 2 days

should be applied and then breast feeding can again be considered. "

My reason for the " radiation protection perspective " statement is that

there may well be other issues that are outside of my experience, and

these must be discussed with the appropriate experts.

Ian

Ian Adam

Radiation Safety Officer

The Institute of Cancer Research

Cotswold Road

Sutton

Surrey

SM2 5NG

Tel: 020 8722 4250

Mob: 07791 702 230

Fax: 020 8722 4300

EMail: Ian.Adam@...

>>> Kassiryn@... 25/08/2003 02:49:14 >>>

> ok here is a good question. I had 100mci of I 131 and was told

that

> I would have to stop nursing my son in order to get treatment. I

> weaned him almost a month ago and had my treatment 2 weeks ago. My

> new endo told me that I could of kept on nursing up till treatment

> and stopped for a short time and then restart. So question is how

> many of you have been in the same boat and how did you do it. I

> really want to try to get my milk back. The Leche League said that

> could help me get my milk flowing again. I have a call into my endo

> to see how long I have to wait before restarting, but I would like

to

> hear about other mothers that have gone through this and how they

> handled the fear of passing I131 through the milk to the baby.

Please

> email me back at zulyooly@y...

> Yuly

> Pap & foll mixed

> TT 6/14/03 Merced, CA

> RAI 8/7/03 UCSF, CA

Hi, Yuly,

I was diagnosed 2 months with papillary post-partum in 2000 so I

understand the question you're asking. I did a lot of research,

including talking with a number of different people from LLL and

other places. We were looking to see if I could pump throughout the

entire thing (dumping the milk) and at some point resume.

Since I-131 has a half-life of 8 days, and the protocol for it being

undetectable is 10 half-lives, that means a minimum of 80 days. I

talked with two ladies who pumped, dumped and later resumed

breastfeeding. Both waited until after 80 days. One of the ladies did

this back in the early 90's and even took breastmilk samples to the

hospital where they geigercountered it. The other lady said that her

child never would go back to the actual nursing, but would take the

milk in a cup.

Obviously, this is your life, and your child. But, even as a card-

carrying member of LaLeche League with multiple food allergies in our

family, I had to admit defeat with the concept of going through all

that radiation entails, plus the getting your Synthroid level right

after (that took 5 months for me), AND deal with trying to maintain a

milk supply (radioactive, no less!). Also, my baby nursed last about

a week before the initial scan dose and then the next week I had a

treatment dose of 29.9. I can attest that iodine goes into lactating

breast tissue. IT HURT LIKE ....!

So, realistically, if you want to not pass the radiation onto your

kid, you have to wait AT LEAST 80 days. By that time your baby will

be many months older and may or may not cooperate with going back to

nursing.

Is it do-able? Well, it's certain something you could attempt if you

wanted. I don't think it's guaranteed to work, though.

Sorry not to be more optomistic,

Kathy W.

dx 6/00 papillary 2 months post-partum

tt 7/00

RAI 29.9 8/00 post-treatment scan showing uptake just in thyroid bed

scan 8/01 showing 'significantly less' uptake in thyroid bed

thyrogen scan 7/02 still less uptake in thyroid bed

5/03 bone density scan showing osteoprenia

[Guest guest]

Hi, Ian,

Back when I was in the position of being newly diagnosed with thyca

and having a brand-new breastfeeding baby, I spent quite a lot of

time devoted to the whole 'do I wean or not' issue.

My endo was totally uneducated on the topic. He referred me to one of

the nuclear med doctors his group uses, and besides having a horrible

bedside manner, that doc totally was against it. He gave the 80 day

timeframe.

I talked to LaLeche League International, and they referred me to

several people. At least one of the medical advisory places they

suggested I call recommended against it.

I did have conversations with at least two ladies who had actually

pumped, dumped and later resumed. Both were under treatment at

research type hospitals, so had done the geiger counter bit with the

breast milk. One of the ladies is very pro pump/dump/resume and she

had information from a number of ladies. I got a range of dates in

terms of how long it took to get the milk down to background and

while some were as soon as 7 weeks, others were longer, some very

close to the 80 day mark.

Besides being controverial medically, it's also often a very

emotional issue for the person/couple involved. In retrospect, if I

were counseling someone I knew personally who was very pro-

breastfeeding, I'd probably recommend they discuss with their doctor

(based on things like the size of their tumor, etc.) how long they

could delay the RAI in order to give the baby time to get bigger and

then wean as opposed to doing the pump/dump/resume bit. Anyway you

look at it, having a nursing infant adds an extra factor of stress to

what is already a stressful 'life event'.

Kathy W.

[Guest guest]

Hi Kathy

I agree completely that these are difficult, emotional decisions that

conflict badly - on one hand you want the best for you, but you also

want the best for your baby.

You say that your endo was totally uneducated on the topic. I suggest

that that endo is more honest than many, but that this is not surprising

as the subject doesn't come up that often, and in most cases it can be

easily resolved by a simple rule of 'stop breastfeeding before RAI'.

This gives the option of delaying the RAI for a while, but avoids the

biggest issues that we have touched on.

I'm not convinced that asking more and more people what to do is that

helpful. Only a very small number have come close to the decisions that

you faced and only a small proportion of them have the training and

knowledge to put it all in context. You need to find those people.

The core issue is 'how much RAI can my baby tolerate without harm? " A

very simple question that would take a lifetime to answer. Those who

have been on this list for a time know that I don't agree with 'walking

doses' of almost any size. Once a few days have passed most of the RAI

has been excreted in your urine, but as long as it's coming out in urine

it will also come out in saliva and milk. Your NRA approves that

patients with large amounts of RAI go home to their families straight

away, yet other experts advise months of delay before resuming breast

feeding. There is a fundamental mis-match in the risk-assessments of

these two views. My response is to say 'measure it', not 'time it'.

If you pump and dump the milk, you are presumably still mothering the

baby, and the baby is still being exposed to the RAI to some degree,

either from the radiation or by ingestion from traces of your saliva

etc. At some stage this involves making an assessment as to what is an

acceptable radiation dose. Once you have decided this, it is possible

to back calculate and come up with a maximum permissible amount of

radioactivity in your milk. This can then be measured for. I believe

that I have seen a maximum concentration of 7Bq /litre for 131I in

drinking water in the UK - but don't quote me as I can't put my hand on

it at the moment.

Ian

Ian Adam

Radiation Safety Officer

The Institute of Cancer Research

Cotswold Road

Sutton

Surrey

SM2 5NG

Tel: 020 8722 4250

Mob: 07791 702 230

Fax: 020 8722 4300

EMail: Ian.Adam@...

>>> Kassiryn@... 28/08/2003 13:17:04 >>>

Hi, Ian,

Back when I was in the position of being newly diagnosed with thyca

and having a brand-new breastfeeding baby, I spent quite a lot of

time devoted to the whole 'do I wean or not' issue.

My endo was totally uneducated on the topic. He referred me to one of

the nuclear med doctors his group uses, and besides having a horrible

bedside manner, that doc totally was against it. He gave the 80 day

timeframe.

I talked to LaLeche League International, and they referred me to

several people. At least one of the medical advisory places they

suggested I call recommended against it.

I did have conversations with at least two ladies who had actually

pumped, dumped and later resumed. Both were under treatment at

research type hospitals, so had done the geiger counter bit with the

breast milk. One of the ladies is very pro pump/dump/resume and she

had information from a number of ladies. I got a range of dates in

terms of how long it took to get the milk down to background and

while some were as soon as 7 weeks, others were longer, some very

close to the 80 day mark.

Besides being controverial medically, it's also often a very

emotional issue for the person/couple involved. In retrospect, if I

were counseling someone I knew personally who was very pro-

breastfeeding, I'd probably recommend they discuss with their doctor

(based on things like the size of their tumor, etc.) how long they

could delay the RAI in order to give the baby time to get bigger and

then wean as opposed to doing the pump/dump/resume bit. Anyway you

look at it, having a nursing infant adds an extra factor of stress to

what is already a stressful 'life event'.

Kathy W.

[Guest guest]

Dear all

I've been having an interesting off-list, discussion with Dr Ain on

this subject since I posted this. He points out that one of the other,

later half-lives is the best determinant the I-131 content in breast

milk. I thank him for this because I had thought differently.

I stand by my suggestion that measurement is better than any rule of

thumb, so please amend my paragraph below to read

" If you were to ask me for a definitive statement on this I would

state

that " From a radiation protection perspective only, I would advise

that

expressed milk be counted in a well-type scintillation counter for the

presence of 131I from day 30 onwards. Once the amount of 131I has

dropped to suitably low levels a further safety margin delay of 2 days

should be applied and then breast feeding can again be considered. "

I also believe that the emotional cost of the whole pump-and-dump

process may be too high.

Ian

Ian Adam

Radiation Safety Officer

The Institute of Cancer Research

Cotswold Road

Sutton

Surrey

SM2 5NG

Tel: 020 8722 4250

Mob: 07791 702 230

Fax: 020 8722 4300

EMail: Ian.Adam@...

>>> Ian.Adam@... 28/08/2003 10:33:18 >>>

Kathy and Yuly

There are a couple of errors here that need correcting, in case they

later become 'fact'.

Ten half lives is a convenient rule of thumb for decaying radioactive

waste. It is not an absolute, a 'safety limit' or anything more than a

rule of thumb. After 10 half lives, the amount of radioactivity is

reduced by a factor of 1000. This does not make it 'safe', it just

makes

it 1000 times safer. Safety is NOT black and white, it is always

various

shades of grey.

An 80 day delay in resuming breast feeding mis-represents the facts.

There are two different half-lives at work here. The first is the 8

days

that is intrinsic to 131I, the second is the rade at which you excrete

iodine from your system - usually somewhere between 6 and 12 hours.

Erring on the cautious side, I would go for 20 half lives (a

reduction

of 1,000,000 in radioactivity) and I would choose the longest half

life

- 12 hours. This calculates out at 20 * 12 hours = 10 days. Decay

works

on top of this in your favour as well.

Is that the whole picture? Not quite. There are other half lives

present, notably the residence time of any RAI that has been taken up

in

residual thyroid tissue.

If you were to ask me for a definitive statement on this I would state

that " From a radiation protection perspective only, I would advise

that

expressed milk be counted in a well-type scintillation counter for the

presence of 131I from day 10 onwards. Once the amount of 131I has

dropped to background levels a further safety margin delay of 2 days

should be applied and then breast feeding can again be considered. "

My reason for the " radiation protection perspective " statement is

that

there may well be other issues that are outside of my experience, and

these must be discussed with the appropriate experts.

Ian

Ian Adam

Radiation Safety Officer

The Institute of Cancer Research

Cotswold Road

Sutton

Surrey

SM2 5NG

Tel: 020 8722 4250

Mob: 07791 702 230

Fax: 020 8722 4300

EMail: Ian.Adam@...

>>> Kassiryn@... 25/08/2003 02:49:14 >>>

> ok here is a good question. I had 100mci of I 131 and was told

that

> I would have to stop nursing my son in order to get treatment. I

> weaned him almost a month ago and had my treatment 2 weeks ago. My

> new endo told me that I could of kept on nursing up till treatment

> and stopped for a short time and then restart. So question is how

> many of you have been in the same boat and how did you do it. I

> really want to try to get my milk back. The Leche League said that

> could help me get my milk flowing again. I have a call into my endo

> to see how long I have to wait before restarting, but I would like

to

> hear about other mothers that have gone through this and how they

> handled the fear of passing I131 through the milk to the baby.

Please

> email me back at zulyooly@y...

> Yuly

> Pap & foll mixed

> TT 6/14/03 Merced, CA

> RAI 8/7/03 UCSF, CA

Hi, Yuly,

I was diagnosed 2 months with papillary post-partum in 2000 so I

understand the question you're asking. I did a lot of research,

including talking with a number of different people from LLL and

other places. We were looking to see if I could pump throughout the

entire thing (dumping the milk) and at some point resume.

Since I-131 has a half-life of 8 days, and the protocol for it being

undetectable is 10 half-lives, that means a minimum of 80 days. I

talked with two ladies who pumped, dumped and later resumed

breastfeeding. Both waited until after 80 days. One of the ladies did

this back in the early 90's and even took breastmilk samples to the

hospital where they geigercountered it. The other lady said that her

child never would go back to the actual nursing, but would take the

milk in a cup.

Obviously, this is your life, and your child. But, even as a card-

carrying member of LaLeche League with multiple food allergies in our

family, I had to admit defeat with the concept of going through all

that radiation entails, plus the getting your Synthroid level right

after (that took 5 months for me), AND deal with trying to maintain a

milk supply (radioactive, no less!). Also, my baby nursed last about

a week before the initial scan dose and then the next week I had a

treatment dose of 29.9. I can attest that iodine goes into lactating

breast tissue. IT HURT LIKE ....!

So, realistically, if you want to not pass the radiation onto your

kid, you have to wait AT LEAST 80 days. By that time your baby will

be many months older and may or may not cooperate with going back to

nursing.

Is it do-able? Well, it's certain something you could attempt if you

wanted. I don't think it's guaranteed to work, though.

Sorry not to be more optomistic,

Kathy W.

dx 6/00 papillary 2 months post-partum

tt 7/00

RAI 29.9 8/00 post-treatment scan showing uptake just in thyroid bed

scan 8/01 showing 'significantly less' uptake in thyroid bed

thyrogen scan 7/02 still less uptake in thyroid bed

5/03 bone density scan showing osteoprenia