# Suspicious for cancer, partial or complete thyroidectomy



## JadeAngel

My doctor called not long ago. My afirma test came back suspicious for cancer, after my original biopsy came back undetermined. He's setting me up with a surgeon, but I have to think long and hard about the options. I'm going in for a consultation this friday.

In some way I think I'd rather get the partial thyroidectomy, even when there's a high chance it's cancer... as there's a slim chance it's not. If it's not, I can keep the other side of my thyroid, and perhaps be spared the life long medication. If it is, well I go through a 2nd surgery. My thyroid has been working fine despite the nodules and possibility of cancer. So go for a chance of 2 surgeries but a chance of sparing myself all the medicine? Or get it all out at once. Any opinions on this? And he said it's a 40/60 chance it's cancer, but I read different statistics all over the place.

Also we've been ttc since 2013, lost 2 pregnancies last year, and were put on hold as the 2nd loss came with tumors and a risk of cancer as well. I'm not thrilled about having to put off trying for even longer again. He said it could take up to 6 months to be ready to try again, but is that just a "worst case scenario"? If I *do* have cancer, have to get it all out, and have to find the right medicine balance... given that my thyroid is working well now and has been very even for months, would that make it quicker to figure out the dosage and all? Any women out here ttc after, and how long after a complete thyroidectomy?

Thank you for any opinions and advice.


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## joplin1975

I'm sorry about the result.

I'm child-free-by-choice, so I can't comment on the pregnancy/ttc issue, but I will say a couple of things:

1) Very, very, very few people who have partials avoid replacement meds. It happens, so I'm not saying "never." I am saying I wouldn't, were I in your shows, make my decision based upon whether or not you would be taking a small pill once a day.

2) Since your dominant nodule is over 1cm, it becomes more...pesky. Once tumors are over the 1cm mark doctors do try to be more aggressive about treatment. Again, that's not a hard and fast rule and you could find a doctor who prefers less aggressive treatment, but once you hit the 1cm mark, odds are higher that cancer will be found in both lobes.

3) You are in a tricky spot in that you have low levels of antibodies. Antibodies make it hard to find a good replacement dose. If you have a TT, those antibodies don't have a place to attack, so off they more or less disappear. So, sometimes, having a TT gives you a "clean slate" and gives you a chance to regulate your hormones more quickly so you can get on to ttc.


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## KeepOnGoing

I'd second what Joplin said (including the "sorry about the result" bit!)

I'm one of those who had a suspicious FNA (no Affirma in the UK) and a partial. Then I had completion surgery when they realised it was in fact malignant. Yes, that was a pain, but not unbearable.

The point is, I did NOT feel well with only half a thyroid and was really glad when they decided to go ahead and remove the rest of it. In fact, the other half was completely clear, but I don't for a second regret having it removed. Now I've got a "clean slate" and can get on with sorting out my medication and living life. And I too would have said that my thyroid was working absolutely fine, even with the thyca.

Taking a tablet (or 3, if you're awkward like me!) every day really isn't the end of the world, and is much, much better than feeling dreadful for the rest of your life.

I'm another one child-free-by-choice, which isn't going to help you with your ttc question. However, I can't quite understand why it would take that much longer to get over a TT than a partial, assuming you don't end up needing RAI (not everyone does, even when they do find something dodgy). At least with a TT your levels are generally easier to control, especially if you have antibodies around. Hopefully, someone better qualified than I will be along to comment shortly.

I'll be thinking of you on Friday. Ask LOTS of questions and go with what seems best to you.


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## webster2

I will chime in and say if it were me, I'd go for the total. I had a partial 20 years apart. One surgery would have been preferable. My thyroid troubles, 24 years ago, were brought about by TTC. We'd had 5 miscarriages and I wanted to know why. Six probable causes were investigated without any clear results. The seventh thing tested was thyroid function, lo & behold, I had a partial and 363 days later we welcomed a whopping 10 pound boy to our family. So, we have 2 kids born 11 years and 11 days apart. I was told by the first surgeon to take replacement to protect the remaining thyroid tissue. I didn't after the birth . Who knows what might have played out if I had listened. I am three years past completion thyroidectomy and finally feel well again.

Make a list of your questions, and hopefully you will be able to decide what will work for you. Good luck!


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## Octavia

I've been in your shoes. It's a tough call. My biopsy was inconclusive, and I was told there was about 5% chance my nodule was cancerous. I opted for the partial. Wrong choice for me, as I was back under the knife a few weeks later to get the other half out.

Knowing what I know now, I would have chosen the total from the beginning. Why? Because I was in great shape after my partial. After my completion thyroidectomy, however, I could tell right away that my voice wasn't right. Four years later, it still isn't. If I don't talk, my neck feels great. But if I have a lengthy or even somewhat loud conversation, I could be hurting for days. It's a mild (sometimes moderate) pain (never too severe), but still...the thought of dealing with this pain for the rest of my life doesn't make me too happy. And no ENT can identify what went wrong, so they can't fix it. Sometimes, it makes me really angry and frustrated.

I guess what it boils down to is that by subjecting myself to two surgeries instead of one, I doubled my odds for complications. And those odds did not work in my favor.


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## KeepOnGoing

Good point, Octavia.

I too had voice problems after my second surgery but none at all after my first.

It's still not right...


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## Lovlkn

> In some way I think I'd rather get the partial thyroidectomy, even when there's a high chance it's cancer... as there's a slim chance it's not. If it's not, I can keep the other side of my thyroid, and perhaps be spared the life long medication. If it is, well I go through a 2nd surgery. My thyroid has been working fine despite the nodules and possibility of cancer.


I would opt for a total. One and done and get on with your life.

Eliminate the "what if's" and move on with your plans to begin a family.

Your thyroid is not working fine - you have nodules and possibility of cancer - this is not what I consider working fine.

I hope for you -it's not cancer - the nodules will always cause issues so having it removed and having it not be cancer is not necessarily the "wrong" decision.

As far as dialing in your replacement medications. Free T-4 and Free T-3 will be required at every lab draw and the only 2 tests that should be used to dial in replacement medications. It took me awhile to find my optimal dose, but my situation was hyper for many years and anti thyroid drug induced hypo for 4.5 years until I had a TT, 11 years ago. Life is good and I have no regrets - I did not have cancer and never had an ultrasound or any labs looking for cancer. My thyroid was filled with nodules and completely confused throwing out excess thyroid hormone.


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## kadalikay

I too, was in your position. My biopsy report came back as a Follicular neoplasm. I opted for entire removal. I received the call 3 days later&#8230;.Follicular Cancer. That was two and a half years ago. Despite the craziness of it all, managing the 1 pill a day was the easy part. I am getting ready to go for a WBS next week. Don't over think it. You probably know what you need to do deep down inside. I know I did. May God bless you and protect you as you start your journey.


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## JadeAngel

Thank you  I saw the oncologist and he's very adament on only doing the lobectomy for now, and crossing the tt bridge only if we have to. He thinks it's a very good chance I won't need medicine if I don't need the 2nd surgery. I did my research on him before going in, and could find nothing but positive feedback about past surgeries and his extensive experience. I trust his judgement, and hope that it comes out benign, or at least that RAI is avoidable. I have the pre-op today, so I'm going there in an hour for some blood work and to talk to the anesthesiologist (perhaps something else, but that's all I was told). I did get my endo to order a t3/t4 test at least, so hopefully I'll have those results within the next few days. I just want to find out if my symptoms are likely related or not. I'm so sick of all the doctors appointments and tests ontop of the endless pain and fever. I want to get back to life.


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## KeepOnGoing

Do you have a date for surgery? I expect you feel better from having a plan of action - I always think that the waiting time is the worse.

Let us know when you're going in, and we'll be thinking of you.

As far as surgery is concerned,it wasn't half as bad as I was expecting. I found it impossible to get a jumper or t-shirt on or off after the op, so open neck clothes were needed, and straws made drinking much more comfortable, but I was only in hospital 1 night and was cooking dinner the following day. Mind you, I did put my husband's wallet through the washing machine the day after I came home from hospital, in an effort to be helpful, so I wouldn't place too much confidence in how alert I was! The anaesthetic was probably the worse part - it took a while to get that out of my system.


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## JadeAngel

Sorry. Didn't see the response before. I had my surgery yesterday. Did a Thyroid lobectomy. For the first time, I had an awful reaction to the anesthesia, and was throwing up since before I regained consciousness. I was in excrutiating pain when I did kind of come to, but I'm sure that was due to me doing some damage to the incision when ll that was going on. I'm better now. I came home from the hospital this afternoon. I'm walking around fine, but I'm VERy uncomfortable and finally gave in and took my pain meds. After how much I hurt myself when I woke up from the procedure, I'm kind of afraid to move my neck much. I feel like I'll do damage again. The oncologist said it was very firm, and seems to suspect cancer a little more now. But he sai we'll get the pathology back quickly. So I guess I'll just have a few days to wait. He didn't have to remove any nodes at least.


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## joplin1975

Glad it's over and you made it. Don't be afraid to take pain meds!! Staying ahead of the pain is the best thing. I'm sorry you got so sick.


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## KeepOnGoing

I thought the anaesthetic was by far the worst part of the whole procedure - well done for being home and better than you were!

Every time I read on here someone saying how little pain they were in after surgery, I feel like a bit of a wimp. It hurt! I took the painkillers for a while - and the only time I decided I didn't need them and would do without, I regretted it hugely.

So do keep taking what you've been given and it will all settle down.

You do need to move your neck a little, otherwise it will get stiffer and stiffer. Just be gentle and look after yourself.

I'm thinking of you - the wait for the path results is horrible, but it doesn't sound like you're in for a long wait so you should know soon.


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## jenny v

Ugh, I had the same thing happen with the anesthesia! I don't know how I did it, but I willed myself into not throwing up (it was touch and go for a few hours). The anesthesiologist actually came to my room the next morning and apologized for not believing me when I told her I have bad reactions to it. I was still too sick or I would have given her an earful. It took me about 3 days before I stopped having nausea.

Don't be afraid to take the pain meds, either. It's only temporary and it's better to use them than to feel horrible.


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## JadeAngel

Thank you all. I found it's more comfortable for me to keep on my feet when I can. When I lay down for extended periods of time, my neck hurts too badly. I am doing gentle motions to keep it from getting stiff, but depends on when it might hurt or not to move it. Ah, but how itchy it can also be sometimes. I'm not touching the steri strips, but it's so hard to resisit the urge to scratch around it. It doesn't itch all the time, just here and there. Right now it is. My nurse mentioned that my oncologist might be able to get the pathology done quickly if he pushes for it. When I asked if it would take up to a week, he said "oh no, much sooner".

I have had general anesthesia several times, including once in august, but never reacted like that. But my mother does, and I think they gave me a bit more this time as the anesthesiologist mentioned redheads having a degree of resistance to it (my hair is a weird blonde/red mix). It was an awful way to wake up, because I was reacting before I came to. A bout of nausea last night, but today so far I've been dealing well with it.

They have me on calcium (extra strength tums I guess? pharmacy filled). But they seem to think my levels will be ok, and this is just a precaution, as they dipped but then went back up before leaving the hospital. They gave me a flu shot before leaving as well. I feel like I got beat up, haha. Bt on the good side, my fever has been lowering since about 1-2 weeks before my surgery. Now it won't go above 100.2 (100.6 before), so my diet and exercise changes did seem to be slowly helping out. Now to get healing and get back to them


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## KeepOnGoing

"Beat up" is a really good description! That's exactly how I felt, too.

I took calcium for a couple of weeks, cos my levels dipped a bit immediately after surgery. Then I reduced them and stopped them really quickly once the levels were back up again. When they get the path results, they should be able to say if any parathyroids were taken - it appears most people can function fairly well so long as they have one or two left (you start with 4, I think) so hopefully that will resolve itself shortly.

I seem to respond differently to anaesthetic every time I have one. It's not nice...

Take it easy, get lots of rest and listen to your body. In a couple of days, I started to feel much more like myself.


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## jenny v

I slept propped up at an angle for the first week or so (I just put a few smaller pillows underneath my main one). It helped with swelling and it was more comfortable, esp. getting in and out of bed. I remember the first time I got out of bed in the hospital I literally grabbed the hair on top of my head and hauled my head up, lol! My neck was just so weak.


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## JadeAngel

Well, got a call from my surgical oncologist this morning. It's cancer. I'm going in for a 2nd surgery on monday to finish taking it all out. Was just running around (figuratively speaking) rearranging school stuff for my daughter, and getting bills paid ahead of time so I can relax again next week. I will also need a round of RAI. I'm assuming they'll take care of that 6 weeks post surgery?

Darn, and I was just starting to get some more mobility back in my neck. I don't know any details of the pathology past being positive for cancer, though.


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## joplin1975

Bummer. I'm sorry. 

It stinks, but you will be surprised how quickly things go. Take care.


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## jenny v

Well, that sucks. At least you're going in right away for the second surgery. It's quick enough so that you won't have time to dwell on it and it's coming right on the heels of your first one so it won't be like you've totally healed and now you're having to start completely over. I imagine the oncologist's office will set you up with the RAI and treatment plan right after surgery.


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## webster2

I am sorry too but you will be okay, give it some time. Best wishes to you.


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## KeepOnGoing

Sorry to hear your news - that's horrible.

At least you can get the second surgery done straight away and have done with it. I had my second surgery 6 weeks after the first, and so had started to heal and feel better, which made it quite hard to start all over again.

Don't forget to ask for full details of what type of cancer they found etc when you see your oncologist next week. I found making a big list of questions quite useful. He answered most of them without my needing to ask them, but my head was in a bit of a spin and so I found it reassuring to know that I hadn't forgotten anything which seemed important.

I'll be thinking of you on Monday.


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## JadeAngel

Thank you. Yeah, I did make a list of questions when we were discussing the first surgery. He commented to my husband about how organized I was (in a sort of joking way) When he came in the morning of he surgery, he asked if I had any questions. When I told him I had no questions the 2nd time, he was like "..... really? ". It was a kind of funny reaction. Same when he called me the other day to give me the news. But it put my head in a fog so I didn't even think to ask (kicking myself now... I'm so curious!). I know one of the biopsies called it a possible follicular lession. Pardon my ignorance, but does that mean anything in what type it might be?

Oh well. Guess I have to wait. I hope it goes as smoothly as this one. I was in unbearable pain when coming to, but that's because my hacking up tore my incission. But I've barely needed to take any of the pain killers at home, and I've been gaining decent mobility in my neck, all things considered. But yeah, it would be better to get it done and over with now. I can imagine the 2nd time will be a little more difficult, but oh well. I got the rest of my house in order, bills paid for the rest of the month, arrange my daughter's transportation, moved appointments for her and my husband, and he went grocery shopping with mom (he doesn't have a license... NOT convenient right now). So at least the next weeks will go smoothly as far as non-medical stuff.

On the plus side, my husband is making all the meals (that is completely unheard of in this house, even when I've got a flu or something). So yeah, it works


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## KeepOnGoing

It sounds like you've got everything sorted - I never did get my husband to make meals, though he did start dealing with the washing after I washed his wallet in a fog of anaesthesia!

I don't know if your second surgery will be much different from your first - as I said, there was 6 weeks between my two ops and I found the second one worse, but then I did have some voice complications after the second one, which didn't help. It's definitely something to get over and done with, then you can move on.

As far as what type of thyca, I had "suspicious for follicular lesion" on one of my biopsies (I collected biopsies, with every possible result under the sun except for what it turned out to be!). I ended up with follicular variant of papillary carcinoma. But there are other possibilities, too, so it's definitely a question to go on List No. 2!

Best of luck - let us know how you're doing.


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## JadeAngel

25 hours until I have to be there. I hate chores, but for some reason I've been obsessed with folding laundry. We had a lot piled up in the basement from when I had 0 energy, and now I'm trying to get it all done. I find it relaxing and distracting right now (this is SO unlike me, lol). I had one FNA, and they took back up samples just in case. So the first biopsy came back undetermined, and then they sent the back up samples (thankful to the foresight of my doctor) to the afirma lab in cali. That one came back suspicious for cancer. And finally, the final pathology is positive. There was also follicular neoplasm mentioned, but I'm not sure in what wording. I only saw part of my afirma result, and now I can't find it in my account for some reason.

I've also come to hate yawning XD


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## JadeAngel

I've been doing research.
Just found my fna results. "There are follicular cells with predominantly microfollicular pattern suggesting a follicular lesion.
An adenomatoid nodule, a follicular neoplasm are alternative considerations."

Ok... so the biggest measurement of the nodule being biopsied was 1.9. But the doctor said "the cancer is 2.4cm, just over an inch" (I think I misheard one of those 2 tidbits of info, though... as an inch is 2.54). Would that mean there was vascular invasion?

I'm not *assuming* anything, nor getting myself worked up. So opinions are appreciated but they don't get me thinking poorly or anything. No choice at this point, just trying to do the only thing I know to relax, and learning more about this stuff.


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## joplin1975

Size is a factor in staging thyroid cancer, but it doesn't really equate to vascular invasion. You should look for words like encapsulated or broken through the capsule.


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## JadeAngel

From what I was reading, since I'm 28, it can only be stage I or stage II.
II if metastisized, I if not (though... I guess I might already know that as I've already had a full body ct scan... though there was a 4mm nodule on my lung, but that could/might/most likely is unrelated and harmless).

So I guess it's more than likely stage I? let's see how accurate my guessing gave has been in the morning, lol.


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## joplin1975

Very likely stage one.

I had six cancerous nodules, three lymph nodes that were positive for cancer, and the post-surgical scan showed "significant uptake" in the neck and I was still considered stage one.

As long as you are young and have a non-aggressive Cancer, it's usually stage one.


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## jenny v

Hope it went well today and they gave you some serious anti-nausea meds this time around!


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## JadeAngel

Still in the hospital. It went well. They doped me up on every anti nausea medicine they could. No nausea this time! (Though plenty of dry mouth, LOL). It was stage I papillary.


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## KeepOnGoing

Well done! It's much better without the vomiting...

Now you just need to get your strength up and look after yourself.

It's worth asking, before you leave hospital, about thyroid medication. I was put on cytomel (T3) until the oncologist had decided if I needed RAI, because cytomel clears out of your system quickly if you need to go hypo for RAI. It all depends on your hospital - best to check.

Thinking of you


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## JadeAngel

And the surgery part of this adventure is done  .
I did ask about the medicine, but he said I will need to talk to my endocrinologist, who didn't show up this time. The hospital seemed extremely busy this time as well. But I have a follow up on friday, so I'll ask again then, and a follow up with my endo on mar.31

My voice is fine after both surgeries. My calcium dipped down but then back up again. They have me on calcium temporarily anyway as I did show signs of defficiency even with good levels.

1st surgery







2nd surgery


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## jenny v

You look good! I was way more swollen after one surgery than you are now! But I had an allergic reaction to the steri strip, so that had a lot to do with it.


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## Octavia

You do look good. 

Sorry you had to go through it a second time, but I'm glad you have it behind you now.


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## joplin1975

Glad you are doing so well!!


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## Andros

How are you doing? I am so so sorry you had to go back in. Bless your heart!

You are in my thoughts and prayers for a full and complete recovery!

Hugs,


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## JadeAngel

I am doing well  . I had my follow up with the surgical oncologist. I have good mobility in my neck now, and no significant swelling or issues. I'm starting to feel the fatigue a bit, but I need to push myself to start my exercises again. I have lost a little weight since this all started, but I'm not going to complain for that. I have to give my endocrinologist a call. They are going to give me a round of RAI and my oncologist thinks my appointment should be pushed up as waiting until Mar.31st would be too long without the medicine.

But, I think considering I had 2 surgeries, it went extremely smoothly. Now... if only my left arm would stop feeling so sore (god knows how many injections I got between the surgeries, lol).


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## joplin1975

Glad you are doing well.

You have a place to isolate yourself after RAI?


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## JadeAngel

Ah, correction to earlier. It's follicular variant of papillary, not classical papillary. He printed up the summary of the 1st surgery results (no results from the 2nd yet).

And We kind of have a plan worked out. I'm basically taking over the 2nd floor of the house. Unfortunately, there is only 1 bathroom and it's on the 2nd floor, but we are going to put a baby gate up before the bedrooms so my daughter doesn't forgetfully wander around up here. Hubby and daughter are going to set up a futon mattress in the living room to sleep on to keep her further away (obviously I have 0 plans to go in her room, though). My husband is going to make food for me, but he's goint to leave it on a small table on the landing of the stairs so I can nab it up. I'm thinking of getting disposable dishes/silverware so I don't have to bother with the separate washing stuff and worrying about my 5 year old using them later. The only thing we have to figure out is transporation. My husband does not have a license, nor someone who can give him a ride to work. And me taking my daughter to the bus (as we have been doing temporarily) will mean more close contact than just driving her to the school quickly (it's a 5 minute drive to school, but normally 15 minutes of holding hands to walk to the bus stop and wait).

But it depends how strong the dose is as to how long the isolation will need to be, right? I'm calling the endo on monday. If nothing else, my husband will take another couple of days off so that I don't have to worry about dropping him off, and he can bring our daughter to the bus stop and pick her up.

Any suggestions I haven't thought of or faults in my plan? The isolation for RAI is what has had me most stumped about how to deal with so far.


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## jenny v

I didn't have to do RAI, but a friend of mine did and she did something similar to your plan. She did take it a step further--she got all plastic, throw away dishes, cups and silverware, she also got a cheap pillow and bedding and a plastic mattress cover, and some cheap clothing (pjs and laying-around-the-house wear). She threw everything away once her isolation was over. It was a little extreme, but she wanted to keep her young kids exposed as little as possible.


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