Team ILC Warriors
Comments
-
Hi everyone. Thank you for the welcoming words. Galsal, my understanding is that you have the option of going the Lupron route or having an oophorectomy to shut down hormone production by the ovaries. As long as you don't mind the Lupron shots, I believe that approach is considered as effective as having an oophorectomy. The only debate I'm aware of with Lupron is how long you have to continue to get the shots to ensure you are in a permanent menopause.
At 55, I still had regular periods. I began my periods at the age of 9. Furthermore, my thyroid probably never worked properly. I had my period for 2 weeks out of every 3 weeks all my life until I was diagnosed with thyroid cancer at the age of 37. My doctors think I was exposed to excessive estrogen due to the number of years I had periods and the irregularily of my thyroid function. My MO never suggested Lupron for me. I'll ask her why at my next appointment. She recommended an oophorectomy. She thought I ought to leave my uterus in place to prevent pelvic floor disorders. My BC surgeon recommended having a total hysterectomy. She said, "Get all the reproductive organs out of there." My hysterectomy was done by a gynecological oncologist. I told the gynecological oncologist to feel free to remove anything extraneous in there! The fewer non-essential organs I have, the fewer organs I have that can develop cancer. I haven't received the pathology report yet, but expect to get it early next week.
Boy, Amy, have you seen the world! And way to go on the dietary changes. I'm working on that, constantly battling my sweet tooth. I've been a vegetarian for 30 years, but during many of those years I considered myself more of a "Pop Tart vegetarian" than a fruit and vegetable consuming vegetarian. I ate nothing with a face, but frequently made poor dietary choices. I'm making better choices recently. My 90 year old mom still lives in Livonia. She wouldn't consider moving to Cincinnati or San Francisco (where my younger sister lives) when she started falling frequently almost two years ago. She lives in an assisted living center in Livonia called Oakmont and she is so happy there. She loves the other residents and the staff. Her room is lovely and she has never had a fall since she moved there.
Claire, my MO explained that the ovaries, adrenal glands, and body fat all produce estrogen. The estrogen produced in the adrenal glands is actually comprised of three types of hormones: estrone, estriol and estradiol. My understanding is that the body needs an aromatase enzyme to convert these hormones to estrogen. By taking an aromatase inhibitor (like Arimidex or Femara), the production of estrogen is blocked, starving estrogen positive cancers of the estrogen they need to thrive. Please, anyone who sees any inaccuracies in my explanation, feel free to jump in and correct. Claire, I would think, in terms of reducing the chance of having a recurrence of breast cancer, having only one adrenal gland would actually be a good thing.
Thinking of all of you today,
Julie
0 -
After my last post, I just read all of the recent posts. Lemon, my doctor used to send me for ultrasounds every other year or so for seven years as my "goiter" grew larger and larger. By the seventh year, my goiter was the size of half a golfball projecting from my neck. It was constricting my breathing and causing me to have a chronic cough. I researched thyroid doctors and found a renowned one. In my research, I also discovered that ultrasound alone can't determine whether the nodules are benign or malignant; only a needle biopsy can do that. The thyroid expert did the needle biopsy and saw calcifications on a bunch of lymph nodes in my neck. I had papillary thyroid cancer and it was attached to most of the structures in my throat (esophagus, vocal cords, parathyroids, trachea), making me stage IVa (widely spread within the neck, but no distant metastases found). By the way, lymph node involvement in thyroid cancer doesn't worsen the prognosis as it does in most other cancers. I'd have that goiter needle biopsied, Lemon. If it is cancer, it's likely to be papillary cancer, the most common kind, which is easy to eradicate. Thyroid cancer is exquisitely sensitive to radioactive iodine treatment. It's much easier to completely eradicate than most other types of cancer.
Julie
0 -
With all I am dealing with now I hate to keep adding things to my list. Feels like I am falling apart. I have a MRI w contrast on lower back on Monday to see if pain is caused from mets.. I know it isnt I have a bluging disc but for peace of mind I will go and do it. Strange before this all started I was just a normal happy 43 year old with no health issue of importance. Now I feel like a walking time bomb.
Mets.. has anyone found a percentage of mets in Stage 1, 2, or 3? Isnt it the lower the stage the more unlikely? I know IVF/nodes plays a role also, what about isolated tumor cells? Is it true we all cancer or not have them?
Guess for me its just another day trying to dig deeper to find some answers and figure out how to best protect myself.. answers are not easy to find.
0 -
Lemon - you will drive yourself mad! Stats are just stats and we are all individual so please focos on strengthening yourself instead of sharing yourself - we all have moré real power against cáncer than we believe xx
0 -
Yes we all have circulating tumour cells - but we can deactivate or destroy or prevent them from becoming mets
0 -
Lemon, I apologize for suggesting the thyroid biopsy. You have too much on your plate right now. The vast majority, more than 95%!, of thyroid nodules are benign. So don't even think about it now. Some day, when time allows (when will that day be, right?), you can schedule a needle biopsy. On the very slim chance that it could be malignant, thyroid cancer is very slow growing and highly curable. Take it right off your plate for the time being. I'll watch for the results of your MRI next week and pray it has nothing to do with mets. {{{hugs}}}
Julie
0 -
No Julie, dont apologize I am okay and know this is reality. Just a scary reality.
Lily- your always around for good advice or to get me back in line.. Thank you. xo
I am stronger than I seem but I do have my moments of OMG.. anger..sadness and sure panic. I do have meds for those times too. Feeling a bit nervous with the MRI and should get my brca results this week. Big week I guess, I did enjoy this past week with no DR appts all week! Its all coming at once now.
Dreaming of Spring and Sunshine.. still snowy and gloomy here in Ohio, enough already!
0 -
Ironic the topic of thyroid came up. Perhaps it is the Estrogen connection. I'm clinically Hypothyroid, due to poor conversion. The Free T3 is at the very bottom of the "normal" range which apparently isn't optimal for me and Free T4 is only slightly above that. Yet, my Mother who had BC did not have a thyroid problem.
A few years ago, I'd lost 30 lbs. It was coming back on quickly too, like 8lbs in 6 weeks. That's when we found the thryoid thing. That's when all my hormones went to hell in handbasket. I'd been at the gyn 5-7 days a week, seriously working out with weights and cardio and was getting quite trimmed up. Folks thought I was losing weight. No way...my belly was getting larger as the rest of me was getting toned. The trainers could not understand it, they saw how much I worked out and I tracked all my food too. Took almost two years to find that my Glucose is out of whack. My Cousin has had each side of her thyroid removed due to pre-cancer growth. We get the thryoid problem from our Maternal Grandmother. Sadly, that Cousin's mother also died of colon cancer.
I'm on the Lupron because the hormone tests show me to be post-meno yet I was still having periods about every 3-4 months for the past two years. Since I was almost done any way, the shot worked. I think no one wanted me to have to go through more surgery at that point. If there's any doubt of a problem along the way, I say take it out. Mom had BC and her Aunt died of Ovarian cancer.
Not once in my menstruating phase of life were cycles ever "normal". Short, on the light side, and no birth control pills ever regulated me. Used to envy those who knew approximately what they theirs would start. Only thing I knew was that once every calendar month it would be there.
0 -
Galsal,
You are more knowledgeable about Free T3 and T4 than I am. Since your periods were never predictable/normal, I bet you anything your thyroid never functioned normally, similar to mine. I wasn't able to maintain a pregnancy until my hypothyroidism was identified and treated, at age 37. I was diagnosed with thyroid cancer 15 years after that. Wacky thyroid levels can disrupt so much and make the effort to lose weight so frustrating.
By the way, I've heard doctors often recommend women use Lupron initially to suppress estrogen levels. As some doctors say, we can always start with Lupron then move to an oophorectomy if needed; we can't go in the other direction.
Listening to 1960s Motown music tonight and swaying my swollen, post-hysterectomy belly to the tunes gently. It ain't a pretty picture over here, but it's making me happy.
Take care,
Julie
0 -
Oy, I feel so badly for some of you who have just been diagnosed. I remember those days of being nervous about absolutely everything! I think once you've gotten a shocking diagnosis from out of the blue, you just expect the other shoe to drop, shy not more bad news. My husband thinks its like PTSD (Post traumatic stress disorder) and I think he's right. If you think about it, if we had been in a bad accident, we'd be skittish about driving afterwards. How normal then, to be anxious about health issues after getting that unexpected dx. I went in for my 10th mammogram without a care in the world. Even baked cookies for the staff as my husband (a dr) had just come on staff at the hospital. I had always had to have a follow up US after a mammogram (though I never thought to ask why as everything was always ok) so I didn't get upset when the mammographer said she needed one. When she said there was something she needed to check, I began to wonder, and then things began to move quickly and the world spun out of control. I'm sure many of you have similar stories.
I spent months being in shock. I would like to give you newbies a hug and say that life does begin to go back to normal. Its a new normal, for sure, but you don't stay on that threshold of constant tension. Most likely, not all results will be bad, though I don't think we'll ever go into a test without anxiety. Ever again. I've had, thank God, two normal mammograms and two normal MRI's post dx. Though I know it can come back, I dwell less and less, some days even go by now without thinking about bc , all the time:) Good luck going thrugh these tests. I will be happy to be here and help with decisions, and jst to listen.
There are threads on bc.org of long term survivors. Nothing is more inspiring and I decided early on to read those as often as possible. Important to remember that we are all posting our problems and anxieties on this board, and I am grateful that we all have a place to go to, but what you aren't seeing are the wealth of good stories, or even just boring stories of women who've moved on. You can get a skewed feeling if you spend too much time focusing on the awful possibilities. I think there are statistically many more good stories, you just don't hear about them.
Sending you big hugs, lots of love, Shari
0 -
Hi lemon!
They did suggest standard of care for me. When I showed my MO a MD Anderson study on how chemo/ rads and tamoxifen don't help ILC as previously thought...she agreed. She said I need to control hormones, obviously. Lemon, I'm surprised Diep is so uncommon near you! Check out the Nola threads here for better info. I'm a natural girl at heart, so very much into juicing and supplements...I feel the iodine protocol is very beneficial...check out www.breast cancer choices.com0 -
Can you send me the link to the article that says rads don´t help lobular cancer as I had rads and and left feeling almost disabled and constantly uncomfortable to being in pain. I was told Rads were really important for me due to nodes being involved and they did rads on node area too.....
Which make of juicer are you using please?
0 -
Can I just respectfully say something about research. One has to be careful, not all research is created equally and one study showing whatever does not mean for sure it means more research needs to be done. There are so many variables to be taken into account when looking at studies and there are so many things that can confound study results. That said I would be interested in seeing that study re lobular....
0 -
Yes, a breast cancer dx and tx can push us into a state of PTSD. If you google PTSD and read the symptoms, many of us are classic. As well, this Science Daily article discusses b.c. and PTSD
http://www.sciencedaily.com/releases/2013/02/130228124030.htm
I'm not one year out from ending tx--and I'm not done with tx--since I'm having a BMX/recon in late June--and I do suffer from PTSD, but not all the time. When I do feel anxious or feel like I'm becoming too hypervigilant (feeling like I'm being consumed), I go for a long hike or go to yoga or or make bread or play with my animals or read a really good novel (something that ISN"T required reading for my university students !) or go to church or mass.
Yesterday my hubby and I did our annual polar plunge in Sedona. I never felt more alive and present after getting out of an ice cold pool and drying off in 70 degree sun... point is do something that makes you feel present and happy. You have to know what those things are, though.
I'm getting all my hair cut off this week. I thought pre-dx I'd hate short hair, but I love how empowered I felt last summer when it was about 3" long (post-chemo). I like the idea that my "enemies" can't grab my warrior hair. I thought that cutting my hair was simply believing that it wouldn't hurt so much if for some reason I had to have chemo again and it all fell out again, but I've turned it around. And I thought I'd dread a bmx, but when I remembered that Amazon women used to cut their breasts off so they could be better archers, I like that vision of empowerment too. I guess what I"m trying to say is that I'm turning what could be hypervigilance into empowerment.
I've gone on too long. Just trying to turn negatives into empowering positives, as much as I can. And I hope all our newbies will understand that they can do that too, when they are ready. I was in shock for months with my dx. It does get better, though.
Claire
0 -
Joellelee- Thank you. What a tough decision you had to make, but I can understand why you made the one that you did.
I am in a holding pattern.. The DIEP is what I want if I go that way. I am wondering if the surgery or rads come first? My RO wouldn't start rads because once he knew I was waiting for brca he said whats the point? Well, I dont know isnt he supposed to tell me? So, hoping for news this week and I will take it from there. Lots of questions right now. I didn't find my RO to be bursting with much info or energy. Just standard protocol as if we are all the same. I do think that's more to protect themselves than us. Patient education is key I learn more each day.
PTSD- I agree 100%. I have a friend stage 4 anal cancer, its been 5.5 yrs. She has been diagnosed with PTSD, she suffers daily both mentally and due to rads physically. She regrets the rads and if it comes back would refuse all TX. Her life is hard everyday, before her DX she was able to do whatever she wanted, its so hard to see her suffer daily. She was severely burned by the rads from anus to vagina, blisters and open wounds. I am certainly not downplaying having rads to the breast but where she had them and then having to use the bathroom was excruciating and has never healed. She needs a knee replacement but they wont do it as they removed the nodes on taht side and refuse to do surgery. She is alive but her QOL is poor. I try to be the best friend I can be to her, she is my rock and always gives me a sunny outlook to my DX. She is supportive and never compares her DX to mine and supports my choices. She took my DX very hard. Strange to me we met by chance and I helped her though her journey, she is now helping me and she "gets it" when most dont..I know now our meeting was more than just by chance. I just know PTSD is real, they shouldve come to the boards to find out how real.
Its 24 degrees here and I am not going out there, thanks all of you for keeping me company this weekend. My anxiety has been high but you all help so much.
much love to all of you Warriors (((HUGS)))
0 -
Lemon - using a hyperbaric chamber has been shown to help rads burns in genital area.....wonder if she knows about it? It is worth pursuing and is a standard treatment in various couintries, it helps healing and creates helaing where there is none.
RADS are often downplayed compared to chemo but some people do have a LOT of negative ongoing effects from it and it affects the scar tissue - I now have the main nerve to arm and shoulder bound up in the scar, main muiscle around shoulder is also now caught up, so limited movement on my shoulder, pain under my arm. Before rads I was totally normal feeling, yes I had the scar and occasional tightness but nothing like this, ribs are painful too
0 -
I agree, Lilly. I think that because the side effects of radiation are not as visible on the outside it is easy to label the treatment as easy. People have come to "expect" a bald head and that illicits immediate sympathy. Although, when actually getting the treatment, chemo is generally more disabling, I have come to think of rads as the gift that keeps on giving.
The difference between my "good" side and my radiated side is night and day and requires ongoing stretching and massage to maintain decent range of motion. I'm not complaining, rads may well save my life.......but, without the visible side effects it seems to be a bit dumbed down.
Kind of the Rodney Dangerfield of treatment.....
0 -
Oh, lemon68, my heart aches for you and your friend. I don't know what to say other than she will be in my thoughts and prayers. You are blessed to have her in your life. She is blessed to have you in her life. Sending hugs!
0 -
Wow, what a busy thread - I'm so glad I found it. I do know quite a lot of you from other threads.
I'm one of the very special ILC ladies grade 3 and triple positive. I noticed a couple of you are too. Over 90% for both ER and PR. Also, it is thought I was exposed to DES in vitrio, but my mother is too old to remember everything. Lots of cancer deaths in my father's family but BRCA came back negative. I was lucky to be diagnosed by mammo when the tumour was still small.
I also believe in a strong link between bc and thyroid issues. The breasts compete with the thyroid for iodine. I have a large goitre which I refused to have removed as I had had enough with 2 lots of bc in 2 years. It has been biopsied and is ok. Time to start thinking about that surgery.
Anyway, the ILC forum is usually very quiet - nice to see a big response to this thread.
Sue
2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009
Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+0 -
THe iodine issue is an interesting one as I am allergic to iodine and have hypothyroid.......so not sure if iodine supplementation is possible for me........
0 -
Hmm, I am allergic to iodine as well.
Just got a call from the ob/gyn with results from an u/s last week to follow up on an ovarian cyst. She said the cyst has changed and appears more complex than the simple cyst it was a couple of months ago. She also said that the lining of my uterus was thicker.
She wants to do a uterine biopsy and a CA 195 (or was it 125?) blood to check on that.
She is the Dr who had to tell me the news about the bc and lymphoma and says that with my luck (and tamoxifen and ILC) she wants to check everything.
Can anyone tell me about the biopsy? She said it can be uncomfortable....0 -
Kestrelgurl- I think Lily knows abouy the CA125 I am sure she will be around to help soon. I am sorry you are having to have yet another test! Is the tamoxifen causing the lining to become thicker? I thought I had read that somewhere, I am still so unsure if I am willing to take it. I would think that the hormones or change in hormones would also be affecting your cysts?
I do have BIG News today... my MRI of lower lumbar showed NO SIGNS of cancer!!! I was a wreck this morning, truly scared to the point of panic, they called at 4:30 to tell me I have my bulging disc that I knew about and sciatica with nerve inflammation. No sign of mets!! So they scared the hell out of me for nothing, or as my DH says about $6,000. I feel so releived and I truly do know how lucky I am.
Welcome Sue- I am glad you found us here, we are a busy board, I am so glad
Lily- I dont know if she knows it but I will call her and mention it, thank you for the tip. She is scared of a MRI, wonder what that chamber is like? She is so desperate for some relief.
Amy- Thank you so much, I know everyday how blessed I am to have her. I know I wouldnt be half as strong without her.
Came back to edit, I wouldnt be nearly as strong either without each of you sharing and caring. Much love...
0 -
Glad to hear your very good news lemon!!!
0 -
Lemon, congrats on the MRI results! Fantastic news! We are celebrating with you! 😃
Kestrelgurl, I haven't had a uterine biopsy but I've had a cervical biopsy and can tell you that was very uncomfortable. A pinching sensation but stronger than pinching. After the dr and nurse left the room, I started to dress and promptly passed out. 😟 But, I think that part may just be me. I've passed out from a blood draw (now I know not to watch procedures! LOL!), passed out after getting my Mirena IUD put in (thank God that piece of crap is out of my body), and passed out after my lumpectomy (second day while taking my shower 48 hours post op). Please let us know how it goes. I'll be sending positive, calming thoughts your way in the meantime.
Welcome Sue! 😊
Hugs to all! Have a good night! 😴0 -
I have had a few uterine biopsies, 4 over the last 3 years, the last one she took two because she wanted more tissue as the lining was quiet thick. It hurt more the last time. What my obgyn does is tells me to cough as she is taking it and it does help,. I bleed for a little bit afterwards so bring a pad incase they dont give you one and I had some cramping for a few hours afterwards and took extra strength Ts. It was fine its all over very quick
0 -
Lemon, I'm happy for you!
Kestrlgurl, I'm also waiting on the results from my CA 125 test. I wasn't dx with an ovarian cyst, but my gyno wants to make sure I've got some kind of baseline, I guess, since ILC likes ovaries and I'm high risk with my 6/11+ nodes, darn them.
I've had punch biopsies on my cervix and as I remember they weren't too bad.
Good morning, ILC sisters! I feel very hopeful for all of us today.
0 -
So, I met with the Radiologist yesterday and he admitted that the benfit would only be 3-5%...not enough for me considering the side effects! Have any of you heard about the genetic mutations called MTHFR?...Very interesting! Similar to BRAC and could explain alot...here is a link...
Plus there is a very active MTHFR group on Yahoo groups! I willbe investigating this much further...sounds promising.
0 -
Claireinaz, nice to hear your positive message. I like you signature, too.
0 -
WooHoo! Great news, Lemon!
If you ever need a back surgeon, I have the best....although I hope it never comes to that.
Thanks everyone for the info on the biopsy. I am a bit less wigged out than yesterday and very glad that my docs are keeping such a close watch. Although I am getting a bit tired of all the prodding and poking. Being mid-way through the TE phase of recon doesn't help either.....but I will get through it.
Got cleared to start running today so that always helps!0 -
Lemon,
I thought of you all weekend. I'm THRILLED to hear your news that the MRI showed it isn't mets. On the other hand, your back must still be causing you a lot of pain with the bulging disc, sciatica and nerve inflammation. Ouch!
Kestrelgurl, I'm sorry to hear you have to go through more poking and prodding. I had an endometrial biopsy a couple of weeks ago, prior to my hysterectomy (it's the same thing as a uterine biopsy, just a different term for it). I didn't think it was too bad at all, but my OB/GYN said reactions to it run the whole gamut. If I were you, I'd take a good dose of Advil (600mg or so) an hour before the biopsy to lessen potential pain. I didn't know my doctor was going to do an endometrial biopsy at that visit, but it caused minimal discomfort even with no Advil.
My doctor actually took three samples and your doctor may do the same. They want to make sure they get enough tissue to provide a representative sampling of your uterus for pathology. Taking all three samples took about 3 minutes total. The doctor sticks a skinny tube thing (much narrower than a straw) through your cervix, into the uterus. She then inserts a long, thin metal probe that has a very tiny brush on the end of it through the tube and the little brush catches a bit of uterine tissue. She did that three times. It was very mildly uncomfortable, kind of crampy.
My doctor was such a sweetie in how she did it, though. She told me ahead of time she was going to tell me a story at the same time she did the biopsies, to help keep me distracted. It was a funny story about a Christmas tradition in her family called "Elf on a Shelf" that delights her two little boys. She started the story and would throw in little comments like "the little tube is going through the cervix now" to keep me apprised of where we were in the procedure. I thought the story was very helpful in distracting me. I had next-to-no cramping after the procedure, and just a little blood discharge over the next couple of hours. Your doctor should give you a pad to use after the biopsy.
Rdrunner's tip of having the doctor tell you to cough when the biopsy is taken sounds like a great idea. It's another form of distraction. I think the key to an easy uterine biopsy will be to take the Advil ahead of time and ask the doctor to distract you, either by telling you when to cough or by telling you a story, whichever you think would help you more. I hope you find it to be no big deal.
0
