CSN Login
Members Online: 6

Newbie in need of support

warriormum
Posts: 20
Joined: Mar 2011

Hi everyone, I hope it's ok to be posting here as I don't yet have a diagnosis of cancer, but I've benn reading the boards for a few days now and have been so reassured by all the in formation and support offered here. After feeling a large lump on my Thyroid last December and having many ultrasounds, 2 biopsies and seeing endos, surgeons etc, I've been diagnosed with a follicular neoplasm and am undergoing a hemithyroidectomy next Wednesday to determine if it's cancer or not. I've been told there is a 20-30% chance it's a malignant growth (does anyone know how accurate that is?), and am here really because the waiting, the not knowing and the "what if's" are driving me nuts!!!!! I'm a 32 year old midwife and mother of two and everytime I even mention I'm worried or upset at potentially having cancer I'm yelled at for being negative. Surely it's normal to be anxious and worried at this time??

Anyway, I'm keen to hear of others experiences before cancer diagnosis. As I mentioned my surgery is next week, then I'm to wait a week before seeing the dr post surgery for diagnosis (MORE waiting). My tumour is approx 2.5cm, I have this feeling, deep inside me that it's cancer, but I haven't dared mention that to anyone is real life. So, that's me.

Catherine

lesliemarie8
Posts: 2
Joined: Mar 2011

I understand that the thought that it could be cancer is scary. Like you, I had this knowing that it was cancer; like God was preparing me for the news. Even when the doctor told me the results of my biopsy, he still wasn't calling it Thyroid Cancer (I think he was afraid to tell me because I was at the appointment alone and somewhat young). The surgery confirmed what the biopsy showed and what I thought: it was Stage II Papillary Thyroid Cancer. I wasn't really shaken though, oddly enough. I am so grateful for the research and treatments that have been developed over the years and as a somewhat young person (age 28), with the type of Thyroid Cancer I had, the prognosis was outstanding. I dare not say that any type of cancer is easy to deal with but I definitely know that what I went through as far as treatments were nowhere close to what I have seen so many family members endure with other cancers (breast, ovarian, etc).

Is your concern a result of negative thinking? No; you have to prepare yourself just in case it is cancer. Is it worth allowing anxiety and fear overtake you? No; you have so much to look forward to. This will just make you hold your children a little tighter and appreciate everyday a little more than you have before. Don't be afraid to ask your doctors these questions you have about what if it is cancer; they should be discussing the plan with you and answering any and all questions that you may have. I found the Thyroid Cancer Survivor's Website to be a great resource for me when I was going through diagnosis, surgery, treatment, and follow-up. The site is www.thyca.org.

Many blessings on your upcoming surgery. Prayerfully, it isn't cancer, but if it is, you can defeat it!

nasher
Posts: 507
Joined: Apr 2010

I am 1 year out now and its been a long year.

yes it is perfectly fine to post here, honestly I wish i knew about this board prior to being diagnosed.

on myself i had a 7.1 cm follicular neoplasm. and they did a partial thyroidectomy and removed that 1/2 the thyroid later they found out that i had both follicular and papalary.

I dont know how accurate the 20-30% is honestly.

are you hypothyroidic as well. yes its normal to be anxious.

I hope it is not cancer but eithor way keep posting here.

yes it drove me nuts cause in 5 december of 2009 they found the growth and it wasnt till 12 febuary 2010 before they operated they were wanting to do a wait and see on me but it was interfering with my breathing so it got pushed up...

make sure the surgen has permission to remove the entire thyroid if they find its cancer while in surgery... sometimes they can tell while they are still in there and it prevents another surgery.

ask thousands of questions both here and to your doctor, become informed.

sure there will be lots of people who tell you that your being negitive.

Oh and if it is cancerious... when the doctor tells you something like "this is the best type of cancer to have" or something of the like... ask him if he wants a transplant of your thyroid tissue...

if its not cancerous then keep posting and talking about your experiance as you want to. and remember anyone who dosnt have cancer is where most of us want to be.

also make sure they do blood tests afterwords for calcium and vitimin D. cause your parathryoids may stop working for a few days (or in my case they 2 of 4 of mine were removed)

also remember if they take your thyroid out and it is cancerous then you are now a survivor.

definatly get informed though and if they mention about you being negitive tell them its cause your thyroid is not working right (and honestly it may be).

find some friends and faimly to support you through this.

definatly go to thyca.org and register there as well they will probably find someone to talk to you eithor localy or on the phone who is farther along then you are. I didnt serch out these places till after i was told it was cancer and it would have helped me so much.

good luck and keep us informed

Craig

warriormum
Posts: 20
Joined: Mar 2011

Craig and Leslie, thanks so much for posting, it really takes away that sense of "I'm the only one in the worls going through this".

Craig, I have declined the frozen section during surgery and will not give permission to have a total thyroid removal until after the official pathology report, as I've done a bit of research which calls into question the accuracy of it, and would rather risk a second surgery than unecessary medication for the rest of my life! To be honest I fear the disruption to my body caused by the loss of Thyroid hormones almost as much as I fear the cancer, from what I've read here it seems to take such a toll on people as they struggle to find the best level of thyroid hormone for them

Will keep you all updated and thanks again for welcoming me into this community.

sunnyaz
Posts: 582
Joined: Oct 2010

I am hoping for the best outcome for you. I am a Papillary Thyroid cancer survivor; thus far. I have been through three surgeries and two Radioactive Iodine treatments since November of 2009. I have a B-RAF mutation gene, so my cancer is more aggressive and more difficult to treat with higher risk of recurrence and metastasis. I am getting ready to go back for another Fine Needle Aspiration on another Lymph node only five weeks after my last RAI treatment. Some of us battle this for life and others have surgery, one treatment and are done with it. If this is cancer in your case I pray that you are one of the ones that gets through it without recurrence.

I haven't had a problem with my Thyroid levels since being put on medication. My Dr. got it right the first time. I am lucky in that aspect but unlucky in others. Be aware that with half of a Thyroid (if it's not cancer) they still may want to put you on replacement hormone therapy at smaller doses to make up the difference. Some patients go for years without the replacement and then later in life find that they need it.

Some surgeons can tell if the tumor is cancer in the OR if they have a Pathologist/Biologist present. If this is the case you could opt for the total Thyroidectomy at that time. If it is cancer the best course is to remove the whole Thyroid in one surgery. The longer cancer is present the higher the probability of later stages and metastasis.

This is a good support site. I hope you will keep us posted on your progress and lean on us whenever you need. I wish you had more support in your home. The possibility of any cancer is very uncomfortable and you really need someone you can talk to. Expression is the first step to beginning the process and facing fear. Negativity is one thing, fear and mental discomfort is another. I think your family needs to understand the difference. Don't be afraid to tell them what is on your mind.

Blessings and prayers,
Julie-SunnyAZ

LizP
Posts: 17
Joined: Aug 2010

Hi,
Good luck with your surgery on Wed. I had my first thyroid surgery on July 27,2010 to remove a large nodule. It was very scary not knowing what to expect. My tumor was fairly large, turned out to be 4.7 cm. so my Dr advised a partial thyroidectomy within 6 weeks of my ultrasound. He also recommended a frozen section while I was in surgery. If the pathology came back positive during surgery they would remove the entire thyroid. If inconclusive they would not.

From my experience, the Dr.s don't perform TT if they are not certain of cancer. I had a small thyroid nodule 6 years ago. I had fine needle aspirations that showed no cancer. I was scheduled to have a partial thyroidectomy and my surgeon at that time didn't think it was necessary. I put it on the back burner and did not have it checked annually.

The results from my frozen section during surgery did not show cancer. They did not remove my thyroid. A week after surgery, I went back for my check up and the pathology showed cancer. I had my 2nd surgery on Aug. 10. The Dr. wanted to do it quickly before any scar tissue formed.

All in all I am doing well. I recovered quickly. I was back to work 4 days after my total thyroidectomy. RAI came 6 weeks later.

I would advise you to talk to your dr. about the frozen section. My experience is that the Dr.s err on the conservative side and will not do a TT if they are unsure of cancer.
If they are positive of cancer, (and your odds are that you wont have it) you can avoid a 2nd surgery if you agree to the TT in advance.

nasher
Posts: 507
Joined: Apr 2010

On my surgery the frozen section came back inconclusive and the final tests showed 2 types of thyroid cancer so I had the 2nd surgery.

@ warriormum - If you have decided to opt-out of the frozen section and opt for the 2nd surgery if needed later I am not going to argue with you about it, and it sounds like you have done your own research and have made up your decision and that YOU are taking charge of your surgery so I am happy with that. Prior to the positive for cancer they had already determined that the 1/2 of my thyroid that I had left would not make up to normal thyroid levels so I would have had to have been on medication for the rest of my life either way (just a smaller dose).

yes it can take a toll on you for the thyroid hormones not being the same as before but in my case my thyroid was going bad cancer or not and it was the cancerous section that was keeping my levels in the normal range (all 7.1 cm of it).

It is true that your body normally recovers faster from smaller surgeries and it will give your parathyroids a chance to start working again from surgery shock.

the only thing I will advise is that you give them permission that is there is 100% no doubt that there is cancer while you are under that they do whatever is necessary. Again I am only advising you from my history and what I have read but the choice is yours and don’t let the doctors steer you away from your choice.

Good luck and keep us informed on how things go

Craig

warriormum
Posts: 20
Joined: Mar 2011

Thanks for your words of advice Liz and Craig. Re the frozen section, I discussed with the surgeon not wanting a Thyroidectomy unless there was an absolute 100% diagnosis of cancer and he agreed then that there was no point doing the frozen section with this surgery, and I'm happy with that decision as I contemplate my surgery tomorrow.

Craig, I really like the way you are supportive of me making my own informed decisions, I think too often patients submit to whatever it is the drs suggest, often with regrets later on. I too am a healthcare professional and always advocate for my patients in a way that puts them at the centre of the decision making, after all it is THEIR body. I also have a keen interest in natural healthcare and approaches to healing so if this turns out to be cancer I will have a lot of decisions to make regarding further treatment. Before you all jump on me and tell me I'm crazy lol, I'm not saying I wouldn't go the tradition RAI route, I'm just saying I would research ALL options and make a decision from that. Heck I'm probably jumping the gun here as the odds are with me that this is not cancer ;)

Blessings everyone, will let you know how the surgery goes tomorrow.

nasher
Posts: 507
Joined: Apr 2010

No matter what anyone says is best for you. You need to be the one in control of the situation.

Yes at the start of this all, prior to them determining it was cancer, I was submitting to whatever they thought was best and probably would have done the wait and see if it didn’t start giving me problems with breathing.

If you know of any natural healthcare and approaches to healing I am sure we would all be interested in reading about them.

The doctors at the time told me i "probably didn’t need to go through RAI" but I pushed for it and reading about the reoccurrences in people who didn’t go through RAI I am glad I did.

And aren’t we all crazy in our own way.

Hoping the surgery goes well, hoping its not cancer
Either way stay around and keep chatting with us all and especially inform us about any other things we should all think about especially other possible treatments and plans

Craig

warriormum
Posts: 20
Joined: Mar 2011

Hi everyone, surgery apparantly went well gotta love those discussions post op in recovery when you are barely conscious! Recovery has been pretty good so far, barely any pain, it's the waiting that is doing my head in, get the pathology results in 3 days time.

LBlackman
Posts: 113
Joined: Mar 2011

So glad things went well with your surgery! That's a major thing you can put behind you now. The waiting is the hardest part, you have to be strong no matter the outcome. When they did my surgery they told me it wasn't cancer and I had no idea they were doing a three day study of the part they removed until my Dr. called two days after christmas and said I had cancer. Hopefully they will call with good news for you. Keep us posted and you are in my thoughts and prayers for a postivie outcome!
Lynne

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Mum,

I had the same experience following my lymphadenectomy. They were wheeling me out of the OR and the surgeon was telling me the preliminary result of the biopsy. I wasn't all there and the main thought going through my head was, "Hey! I woke up!", this was my first surgery. Anyway, all I heard was "[mumble] thyroid [mumble] 20 years [mumble]". I guess it served its purpose, I wasn't surprised when I was told an hour later. In one way I was lucky, I didn't have to wait anxiously to hear it. Hang in there!

I also had very little pain, if any, following the total thyroidectomy & radical neck dissection. I was stiff and sore, but no sharp pain, which I did have following the lymphadenectomy. But even that wasn't too bad, I think I told the nurse 2 or 3 out of 10. I'm guessing the difference was the lymphadenectomy was done through the sternocleidomastoid muscle, while during the neck dissection it was exposed and retracted.

I don't know if you have a drain or drains in. Once they remove them, the swelling in the area will increase. Also, I suggest you prepare yourself with a pain pill before you go to have them removed. I had two, one came out fine, the other was painful and I'm guessing may have been very painful if I hadn't fortified myself. I'm almost two months post-op, and the swelling is still there, not as bad as immediately after he removed my drains, but very noticeable to me. There is very little restriction of movement but I can feel it when I move my head. I'm 51, so I'm guessing it'll take a little longer than normal for the swelling to go down.

Good luck!
Alan

warriormum
Posts: 20
Joined: Mar 2011

My surgeon won't give results over the phone which is a little frustrating, but he also doesn't charge for the post op consult so I guess that is ok. I will be seeing him tomorrow so not long now, I'm keeping busy today to keep my mind off things. I keep swinging between this feeling of dread that I have cancer, but then reassuring myself that it can't/won't happen to me!

Alan your surgeries sound painful. I only had a partial thyroidectomy and no drains etc. Re those post op "conversations" I remember having a most inappropriate (though hilarious) conversation with a nurse about these tiny black shorts my suregeon had changed into before leaving the hospital. I was his last surgery for the day and I assume he was headingf off to the gym, I can only hope he was out of earshot at the time!

nasher
Posts: 507
Joined: Apr 2010

hopeing its non cancerous... I agree the waiting is the worst thing

for myself I had a drain from when they did the partial and again when they did the completion surgery.

oh and yes the swelling did go up once they removed the drain, but not my much.

Some suregons always do drains, and some almost always do not it all depends on the suregon and the amount of expected drainage.

warriormum
Posts: 20
Joined: Mar 2011

So it turns out I have follicular Thyroid cancer. I was oh so calm when the dr told me this morning (but then I had a feeling anyway as I'd mentioned) but then lost it in the car. Returning to hospital in 5 days time for removal of rest of thyroid then RAI to follow.

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

So Sorry!!!

csm2007
Posts: 25
Joined: Dec 2010

I'm sorry that it was follicular cancer warriormum. Try to get some rest the next few days, it's alot to absorb. Just know others are thinking of you.

sunnyaz
Posts: 582
Joined: Oct 2010

Catherine,

I am so sorry to hear this. Thyroid cancer isn't as rare as it used to be. Hold strong and keep your chin up. We are all here for you.

Blessings and Prayers,
Julie-SunnyAZ

nasher
Posts: 507
Joined: Apr 2010

I am sorry you have cancer as well

we are always hopefull for everyone who comes here.

I would definatly recomend going through RAI... there are alot of pros and cons of doing RAI therapy, but from the postings on this board as well as others I have noticed that the people who did not do RAI and have reocourances later are always annoyed that they didnt do it.

be sure to do your reserch and figure out every question to ask.

sunnyaz
Posts: 582
Joined: Oct 2010

My doctor told me yesterday that RAI is very successful in the prevention of Lung metastasis. I was frustrated that only five weeks after RAI (178 mCi's) I had suspicious nodes. He said that nodes are less likely to uptake the iodine but that it very well could have prevented Lung met's down the road.

Hugs to you Catherine! Remember that we are always here for you.

Julie-SunnyAZ

warriormum
Posts: 20
Joined: Mar 2011

Your words of support and kind thoughts mean so much to me. Being follicular cancer already showing vascular invasion I will definately be having the RAI...no doubt about that anymore! I'm trying to stay positive, but find my mind wandering at night when it's dark and quiet, that's when I feel alone and frankly terrified.

lec2011
Posts: 14
Joined: Apr 2011

Hi Warriormum,

I am going through the same exact situation and they gave me the 20-30 percentage as well. I have not been diagnosed and I go to the doctor again tomorrow. I am scared and people tell me I am negative as well. I am not not I am actually pretty happy but I feel there is something going on just like you did. I just don't know what. Your post allows me to know I am not the only one in the world feeling this way.

warriormum
Posts: 20
Joined: Mar 2011

Lec, thanks for your post, I'm glad that posting about my own situation has helped you in some way. I think people are so quick to discount your own intuition, afterall it's your body, surely you know it the best? I'm still cross to be honest that my diagnosis dragged on for 4 months. I found the lump back before last Christmas and although I was referred for diagnostics straight away there was never any hurry because Thyroid nodules are so common in women I guess they all assumed I would be a benign nodule as well. Let us know how you go Lec.

Well, my surgery is this afternoon, hoping recovery will be good again.

nasher
Posts: 507
Joined: Apr 2010

Well...

Talking with a lot of doctors I have found out that most will push the wait and see approach cause most thyroid goiters go away normally.

For myself, the enlarged thyroid was found Dec 5 2009 had to wait till Jan 12 2010 (came back inconclusive)

Due to the size of the goiter and the fact it was making it hard for me to breathe they finally agreed to take out 1/2 of it Feb 22 2010 (80 days). One week later they found cancer and then the next week the rest of my thyroid was removed.

its not that they are common in men or women its that thyroid issues are normaly taken nice and slow and wait and see.

Thyroid cancer dose not have large support groups like breast cancer and the like dose. Most doctors conceder it an easy cancer so again they don’t stress on it.

I remember back in September-October 2009 I knew there was something wrong with me but back then I didn’t even know about thyroid cancer or even much about the thyroid.

@ Lec2011 - Yes a lot of people will say you are being negative. You know your own body and you know there is something wrong.

Remember you need to take charge and let the doctors know you want it checked now and want to review your labs and ask thousands of questions… I honestly wish I remembered the questions I asked so I would be able to post them here to help

Please let us know how things go

Craig

warriormum
Posts: 20
Joined: Mar 2011

Well this second surgery has really knocked me for six. 3 days post op I still have terrible nausea which I'm praying is just residual anaesthetic effects and not a reaction to the Thyroxine I've started on. I also have tingling around my mouth and in my hands and feet, and have started taking calcium for this. A much tougher recovery than I had anticipated, not sure I'll be able to go back to work as soon as I'd hoped too.

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hang in there Catherine!

Just take it easy and take care of yourself. Don't worry about anything else.

Alan

nasher
Posts: 507
Joined: Apr 2010

well first thing you can take off most the worries for thyroxine... your not going to be alergic to thyroid meds like this cause its the same type your thyroid produces...

as far as the tingling and such... did they take any of your parathryroids when they took your thyroid out???

if they put you on calcium hopefully they also put you on vitimin D. the calcium and vitimin D are for the fact that the surgery probaly put your parathyroid glands in shock they will probably start working again in a few days.

definatly talk to the doctor about this and get copies of your bloodwork to determine what your issues are.

ask questions and demand answers...

good luck and keep us informed

Craig

warriormum
Posts: 20
Joined: Mar 2011

Thanks Alan, feeling slightly better today. Craig I will see the surgeon in 4 days and will ask re the parathyroids, assuming its just shock/disruption.

amorriso
Posts: 186
Joined: Oct 2010

Hi there: Just wondering how you are doing. Hoping things are progressing well. Do keep in touch.

Andree

warriormum
Posts: 20
Joined: Mar 2011

Thanks for prompting me to update Andree! Am doing ok, though very, very tired which I guess is to be expected only 4 weeks out of surgery. I'm a little frustrated at the moment waiting to hear from the nuclear medicine people as my surgeon told me to expect my RAI approx 6 weeks after surgery, which is only in 2 weeks time and I've not heard a thing. More waiting I guess.

amorriso
Posts: 186
Joined: Oct 2010

Glad to hear from you. I remember being really tired too after my TT. Did they start you on any thyroxine? I didnt start mine till after the RAI - I think that's why I was so tired.

I had a second surgery in March to remove lymph nodes - oddly though it was a much more extensive surgery I recovered faster. Even went swimming after 2 weeks! I've just come home from doing my second RAI - glad its over and my scans initially look good.

Keep on top of your nuclear medicene people and your surgeon. I found I had to be quite pushy and demanding to make sure treatment was done on time. I actually had one doctor tell me not to worry - its slow growing so I had time. I dont think he'll be telling anyone that again soon.

I did the thyrogen injections for this second round - expensive yes - but it made a huge difference in how I felt.

Hope you get treated soon and well.

Keep in touch - lots of us there to help you.

Andree

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network