Aa
Pregnancy after Cancer
I am 28 with a 2 year old son. Was dx with ThyCa last year, had a TT, radiation. Now what I can't understand is why you have to have four clean scans before you can get pregnant. I have had two clean scans so far and have a order for another one in August, but I keep wondering if I should or not.
I am not trying to be unsafe or not caring about my health. It just is that when I went in the drs appointment that I was told I would have to have a biopsy, I asked her about us TTC again. She said it was fine as long as my biopsy came back normal. Of course that didn't. Now I just keep wondering why this is taking up 2 1/2 years of my life (and I am only at the half way point). I am not getting any younger and I really did not want my little boy to grow up as an only sibling, I really want him to have companionship with his siblings like I did with mine. I don't want him to grow up the first 4 or 5 years alone and then me have another child then and that child have to grow up "alone" too. I know they won't be alone but they will be old/young enough to be intrested in two different things. If that makes any sense
I tried to talk about this with my Endocrinologist and thought we were on the same page but the very next appointment I had brought it up she said that I misunderstood her and that she recommended that I follow her orders and do two more scans. I am very sadden by this.
Sorry I am rambling, just been having this issue on my mind for a long time now.
I am not trying to be unsafe or not caring about my health. It just is that when I went in the drs appointment that I was told I would have to have a biopsy, I asked her about us TTC again. She said it was fine as long as my biopsy came back normal. Of course that didn't. Now I just keep wondering why this is taking up 2 1/2 years of my life (and I am only at the half way point). I am not getting any younger and I really did not want my little boy to grow up as an only sibling, I really want him to have companionship with his siblings like I did with mine. I don't want him to grow up the first 4 or 5 years alone and then me have another child then and that child have to grow up "alone" too. I know they won't be alone but they will be old/young enough to be intrested in two different things. If that makes any sense
I tried to talk about this with my Endocrinologist and thought we were on the same page but the very next appointment I had brought it up she said that I misunderstood her and that she recommended that I follow her orders and do two more scans. I am very sadden by this.
Sorry I am rambling, just been having this issue on my mind for a long time now.
I'm tired - sorry.
The references for RAI (and Tg followup) begins on page 9 of the article I referenced.
The last paragraph should say "usually *BY* some doctor . . . "
Yeah - must sleep now.
take care
Utahmomma
(too well versed in papillary carcinoma and RAI)
The references for RAI (and Tg followup) begins on page 9 of the article I referenced.
The last paragraph should say "usually *BY* some doctor . . . "
Yeah - must sleep now.
take care
Utahmomma
(too well versed in papillary carcinoma and RAI)
Uptake in the bowel (and bladder, and liver) is to be expected - it's the body expelling the radiation (it's not so much "uptake" as just where it is collecting to be eliminated).
Since there was a bit of uptake in the thyroid bed (which is normal - there is always tissue left after surgery) and it sounds like there was no spread; the protocol now would be to check your TSH and Tg levels. Your TSH level should be suppressed to <.1 and your Tg should be <2. If your levels stay stable at that for a few months (and you are cleared to TTC by your OB/GYN who should be very aware of your radiation treatment) then you should be fine.
Unless there is distant metastases or you have additional recurrences there is no need to repeat the RAI *treatment* as long as your TSH and Tg stay in range - it would be exposing you to radiation needlessly.
Please, find another endocrinologist. You *do* need to be followed by an endo because of your cancer diagnosis but it sounds like yours is a bit TOO aggressive or just doesn't know the protocols for RAI treatment.
I'm attaching the protocols from the American Association of Clinical Endocrinologists regarding thyroid cancer treatment (including RAI and Tg monitoring).
http://www.aace.com/pub/pdf/guidelines/thyroid_carcinoma.pdf
Research quoted in this article shows that routine WBS (whole body scans) may not be a good indicator following TT and RAI - at least not as good as following Tg levels.
They do recommend a WBS a few years following surgery but if you plan it right (and don't breast feed) that shouldn't be an issue - you'll just have to be isolated from your kids for a few days but you've been there, done that.
As for not getting lab results and trusting your doctors as "experts" - we've *ALL* been there, done that. We all have to learn the hard way too (usually but some doctor messing us up). Don't worry - you've been forgiven. :-)
Welcome.
Since there was a bit of uptake in the thyroid bed (which is normal - there is always tissue left after surgery) and it sounds like there was no spread; the protocol now would be to check your TSH and Tg levels. Your TSH level should be suppressed to <.1 and your Tg should be <2. If your levels stay stable at that for a few months (and you are cleared to TTC by your OB/GYN who should be very aware of your radiation treatment) then you should be fine.
Unless there is distant metastases or you have additional recurrences there is no need to repeat the RAI *treatment* as long as your TSH and Tg stay in range - it would be exposing you to radiation needlessly.
Please, find another endocrinologist. You *do* need to be followed by an endo because of your cancer diagnosis but it sounds like yours is a bit TOO aggressive or just doesn't know the protocols for RAI treatment.
I'm attaching the protocols from the American Association of Clinical Endocrinologists regarding thyroid cancer treatment (including RAI and Tg monitoring).
http://www.aace.com/pub/pdf/guidelines/thyroid_carcinoma.pdf
Research quoted in this article shows that routine WBS (whole body scans) may not be a good indicator following TT and RAI - at least not as good as following Tg levels.
They do recommend a WBS a few years following surgery but if you plan it right (and don't breast feed) that shouldn't be an issue - you'll just have to be isolated from your kids for a few days but you've been there, done that.
As for not getting lab results and trusting your doctors as "experts" - we've *ALL* been there, done that. We all have to learn the hard way too (usually but some doctor messing us up). Don't worry - you've been forgiven. :-)
Welcome.
I would get VERY specific with her. Especially with how much this means to you! And maybe even get a second opinion. I think the "TTC" thing would be ok unless you have a metastasis. Don't get scared. Maybe your doc is following old protocol. Utahmomma is pretty (ok, REALLY current) on all this stuff...
Thanks so much. I know I am going to hear gasp all around and probably some telling off too. But I have always assumed my drs know more than I do so just do what they tell me to do. So I have never been one to ask for copies of anything. Honestly the dr never seemed concerned about the uptake in other parts, just said it was normal (for what ever that means). It kinda worries me that it could be cancer and she wouldn't express those thoughts to me. Even when I asked her if we could "talk" to someone else about TTC (which your right pregnancy....Trying To Conceive), she said we can talk to the oncologist, but it was her recommendation (that she follows from the thyroid association) that I have two more scans.
I don't know. Maybe I should have one more scan and go from there. I just hate waiting :-(
BTW Thanks so much for your comments!
I don't know. Maybe I should have one more scan and go from there. I just hate waiting :-(
BTW Thanks so much for your comments!
K, so I'm a little slow on the uptake, but what's a TTC? From your remarks, it sounds like pregnancy, but I can't think of any acronym that fits.
If you have uptake in your bowel, it may be that the cancer has spread and that's why she doesn't want you to conceive. But she should be handling you much more aggressively if that's the case. I'm not one who's been there but I'm sure Utahmomma can speak to that... I spoke with both my endo and gyno about waiting 12 months and of course the gyno about a specialist (if I wanted to persue it) because of my age. No one ever mentioned waiting any longer. My cancer was small and encapsulated and had not spread. (Pap cancer with follicular variant) Do you have your scan results? I can't imagine why you'd have to wait unless the cancer had spread.
If you have uptake in your bowel, it may be that the cancer has spread and that's why she doesn't want you to conceive. But she should be handling you much more aggressively if that's the case. I'm not one who's been there but I'm sure Utahmomma can speak to that... I spoke with both my endo and gyno about waiting 12 months and of course the gyno about a specialist (if I wanted to persue it) because of my age. No one ever mentioned waiting any longer. My cancer was small and encapsulated and had not spread. (Pap cancer with follicular variant) Do you have your scan results? I can't imagine why you'd have to wait unless the cancer had spread.
Thanks for the comments, and sorry about the information. A lot going on in my head all at once..
Early of last year after my son was a year old I was complaining to my PCP that I was still tired and and not sure if it was from having a little one or something else (I had been previously dx with Hypothyroid and was on meds). She wanted an ultrasound done on my thyroid which I guess a mass came up cold. When I went in for my results of the ultrasound I had asked her about TTC. She said because my ultrasound came back iffy she wanted me to get an biopsy. But if my biopsy came back negative for cancer than I had the okay to TTC.
-Dx with Papillary Cancer on April 12, 2007
-TT on May 1st, 2007 (after my TT I met my Endocrinologist for the first time. She asked me if I was wanting any more kids and I said yes, she said I would have to wait 2 1/2 years. I was on a morphine drip at the time..not a good time to discuss specifics with me). 1 cancer mass was 3 CM and their was another one really tiny like 3 mm or something like that.
- RAI June 25th, 2007
-Whole Body Scan July and January 2008 and one scheduled for August
At my first official dr.s office with my Endocrinologist I discussed with her that I wanted to TTC again after the 6 months waiting time from my last scan (which would be July, 2008). Thought we were on the same page. So the next time I went in I asked her about it because I wanted to know if there was anything different I needed to do. She kinda freaked out and said I must have misunderstood her and that I was to wait till I had another two scans done. She said there was a little uptake still in my thyroid and some in my bowel (I think. I am not really good on details). But she said it was normal (and she said this before we got into the discussion of TTC). She said that it was recommended by the Thyroid Association to have 4 scans and the 6 month wait period before we should TTC.
Not really interested in going to see her again. Is it possible for the PCP to handle my Thyroid issues??? But anyway I can't figure out for the life of me why I must have four scans???? I keep wondering if we should talk to my PCP, but after last year I am just not willing to make another dr.s appointment that isn't right now necessary. But I am just about to hit my 6 months mark from my last scan and just would love to TTC again. I just don't know how important it is to do all these scans.
Early of last year after my son was a year old I was complaining to my PCP that I was still tired and and not sure if it was from having a little one or something else (I had been previously dx with Hypothyroid and was on meds). She wanted an ultrasound done on my thyroid which I guess a mass came up cold. When I went in for my results of the ultrasound I had asked her about TTC. She said because my ultrasound came back iffy she wanted me to get an biopsy. But if my biopsy came back negative for cancer than I had the okay to TTC.
-Dx with Papillary Cancer on April 12, 2007
-TT on May 1st, 2007 (after my TT I met my Endocrinologist for the first time. She asked me if I was wanting any more kids and I said yes, she said I would have to wait 2 1/2 years. I was on a morphine drip at the time..not a good time to discuss specifics with me). 1 cancer mass was 3 CM and their was another one really tiny like 3 mm or something like that.
- RAI June 25th, 2007
-Whole Body Scan July and January 2008 and one scheduled for August
At my first official dr.s office with my Endocrinologist I discussed with her that I wanted to TTC again after the 6 months waiting time from my last scan (which would be July, 2008). Thought we were on the same page. So the next time I went in I asked her about it because I wanted to know if there was anything different I needed to do. She kinda freaked out and said I must have misunderstood her and that I was to wait till I had another two scans done. She said there was a little uptake still in my thyroid and some in my bowel (I think. I am not really good on details). But she said it was normal (and she said this before we got into the discussion of TTC). She said that it was recommended by the Thyroid Association to have 4 scans and the 6 month wait period before we should TTC.
Not really interested in going to see her again. Is it possible for the PCP to handle my Thyroid issues??? But anyway I can't figure out for the life of me why I must have four scans???? I keep wondering if we should talk to my PCP, but after last year I am just not willing to make another dr.s appointment that isn't right now necessary. But I am just about to hit my 6 months mark from my last scan and just would love to TTC again. I just don't know how important it is to do all these scans.
Six to 12 months is the standard (my sister got pregnant at, I swear, 6 months and 1 day after her last RAI treatment).
Maybe it was because of your type and/or spread of thyroid cancer?
Can you give us some details about your cancer?
Utahmomma
papillary carcinoma '03
recurrence and RAI '06 and probably '08
three sisters with papillary carcinoma (one with three recurrences and RAI)
Maybe it was because of your type and/or spread of thyroid cancer?
Can you give us some details about your cancer?
Utahmomma
papillary carcinoma '03
recurrence and RAI '06 and probably '08
three sisters with papillary carcinoma (one with three recurrences and RAI)
I've always heard that you must wait 6 mos - 1 yr. I'm not sure why she'd make you wait so long. The biopsy situtation is unclear to me... What did they biopsy if you had a TT and RAI? Have you had a reoccurance that they did a biopsy on?
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