Team ILC Warriors
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Tamoxifen for 10 years here as well, although if my cycle doesn't come back they will eventually move me onto an Al
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Tamox for 10 years here too. No SEs on Tamox now although I did start with warm flushes and having trouble staying asleep. Everything seems to have fallen into place now
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This is my take on AI's and side effects. I would rather have long term side effects than not have a long term.
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Kar, that is pretty much how I think of it too, lol. That said, my SEs really are minor now (although the first 6 months were a bit rough), and I do understand that for some patients it really can be a difficult decision to continue the AI.
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hello everyone
Im so glad I read thru this page of the thread ! I was also scared to take tamoxifen because of the side effects I read about. And I was definitely afraid of losing my sex drive, my bf and I have a very healthy and satisfying sex life and I don't want to lose that. But, after reading this page my fears are not so much anymore. Just wanted to say thanks ladies, I love this website, I don't know what I would do without it. I had an oophorectomy a week and a half ago and so far I don't feel any different as I thought I would because this surgery can also send you flying into meno. I started tamox on 11/18 and havent had any SE's ! I hope it stays that way
Jojo..good luck and I will be praying for you. xo
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Need help ILC Warriors, I started Tamoxifen on Monday this past week, this is friday, I have had some side effects one being a cough. Is anyone experiencing that?
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Fun, I've never had a cough as a SE although I have others. On tami 1 1/2 years. If you haven't already, please check out the Bottle 'o Tamoxifen thread. Lots of great info on SEs. Good luck! I hope your cough goes away soon. I know I tend to get them in winter when it's dry so I'll have to run a humidifier.
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AmyInMich - thanks for the input, I am hoping the cough will go away, I am paranoid and hoping the month while I was not on anything the cancer didn't spread. I have a humidifier on my furnace so I will adjust that to see if that makes a difference. I pulled up side effects and a cough is on the list. Will keep an eye on it. Thanks for replying have a great day!
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ILC is a slow growing cancer, that is why its often grade two when its found.......so one month is neither here nor there......i started only three months after diagnosis two and a half years ag
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Agree with Lily, it's known to be slow growing so I wouldn't be too worried. It could be a side effect from the Tamoxifen or did you finish radiation not long ago? Sometimes that can cause a cough that can last up to a couple of weeks after treatment.0
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Cough I had is going away, allergies aparently! Just now have to take another pill for that.....Tamoxifen is getting better, except now that our weather is yucky I am waking up like I am 80 yrs old, with alot of aches. Especially where I had my bilateral. Hoping things get better. Thanks all for your input on the cough!
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So glad the cough is going away! I hope you feel better soon
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thanks amyinoakrid for replying have a great weekend!
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I am a new member. I had a second occurance of ILC in my left lymph nodes 6/5/14. Opted for left mastectomy and lymph node removal 8/7/14. Got a left tissue expander. CT scan studies showed ovary involvement. 10/10/14 had da Vinci Robotic hysterectomy showing multiple involvement: ovaries,fallopian tubes. utererus. omentum, and washings. Am now Stage 4.
Had to have tissue expander removed due to recurrant seroma drainage required.
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S**t, whtmtnmama, I'm so sorry. I hope they feel they "got it all" this time. It is just so unfair.
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whtmtnmama, so sorry to hear that. Also hope they got it all.
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whtm - so sorry you have to be a member here, but welcome to our group. Sending hugs and healing energy to you!
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Hello ILC Warriors!!! And that we are my friends!!! I haven't been here for a couple of years. I find myself coming back to the most informative and compassionate friends. A person can ask for input here and everyone relates. Dont get me wrong- I love my husband,friends and family, they have been my backbone in support, but with bc community you can vent all you want and you feel okay doing it.
LOBULAR-it's grows differently then ductal. Its not as common. I had pain that led me to the disease. I will celebrate 5 YEARS in August!!! I would like for someone to tell me what test/scan can pick up lobular??????I am having pain below my collarbone(actually have hadd it for 3 yrs) that put off heat now. It has widened -toward my armpit and also down towards my implant. Tender to touch on side of implant. I am calling my PCP for a test and dont know what to ask for, any suggestions????? I bring this up to my oncologist and he tells me I have no more breast tissue-ugh......It's so frustrating because you hace a fine line on telling your dr what should be done b4 he might be affended. So that is why I am going to my primary dr.. I did tell him at my appt yesterday(6 month appt) I have had a lot of night sweats and seem to be bruising in places I dont know that I have hit... He said there werer no concerns with that. I chaulked it up to the awesome arimidex. Cant wait to be free of it and be free of side effects that come with it! Any hoo any suggestions on what scans to ask for maybe a sonogram? Also anyone else have similr issues? Thank you for listening. You all are
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you are wonderful!!!!
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mtks, I am an ILC patient as well. I was having shoulder pain a few months ago and went to see an ortho, thinking I had bursitis or something. He ordered an MRI, which showed my shoulder pain was metastatic cancer spread to my bones.
So, I don't know if an MRI will detect all ILC, but it did find mine. And the bone biopsy did confirm that this new tumor is also ILC.
Hope this helps!
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Dianne, I am both sorry and angry to hear your news. This bastard is a sneaky one. I hope treatment is being gentle on you.
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I was diagnosed with ILC on March 9, 2015. I was wondering if anyone could recommend a medical oncologist in the Marietta Georgia area (about 20 miles north of Atlanta). I have been reviewing a few physician but not sure who to decide on. Can you share how you researched information to determine which MO to use?
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mtks - so sorry to hear your having problems getting your MO to take your concerns seriously. SHAME ON HIM! Hopefully your PCP will help out here or refer you to another MO. I was told by my NP that ILC does not show up well on scans, meaning ultrasound, I think. However that is what they use on me for any little area of concern during my follow ups. As I recall, she said CT scans would be better for looking at the bones. And of course, MRI's are good for picking up on this. I hope that you pursue it and don't let anyone put you off. Best of luck to you!
Dianne - sending gentle hugs! It makes me so sad whenever I read of an ILC sister with a recurrence. Wishing you strength to get through this! Stupid cancer!
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hartrish, my oncologist is Hillary Hahm - and I love her! She's not the huggy/touchy-feely sort but she's caring, detail oriented, and very up-front with information (even when it's not what you really want to hear). There are other MOs in the practice, North Georgia Oncology Center, which is located inside Kennestone Hospital.
I was referred to her by my breast surgeon who works out of Northside Hospital, Jenny Amerson. She sent my path reports to Dr. Hahm and texted her about my case immediately after my diagnosis. As I was sitting there, they texted back and forth, set me up for my MO consult and discussed an initial treatment plan. Any time an issue or question came up, they would communicate directly between them, which made it really easy for me.
Good luck with your MO search. I'm sure you'll find someone great, being so close to a Wellstar hospital.
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DianneNC I am so sorry to hear of your reoccurance. It just makes me so angry and sad at the same time. Prayers and hugs to you and THANK YOU for reaching out to me. I greatly appreciate it. If you dont mind me asking- did you have any other symptoms other than shoulder pain? the reason I ask is when i press on the area it has pain but it has heat and pain with no rhyme or reason at times. And it can trigger tinge electrical feeling in my back shoulder blade when I press on it at times. I know that sounds strange but true. I hate to be a weinie or overly cautious about the area(my oncologist told me to forget about it-quit worrying AND quit touching it!) but i dont touch it unless it catches me off guard and once a month when i do my exams. I will address it with my pcp and see where it goes. She listens to me but hate to do a test when ILC is so dang hard to find in certain scans. Gentle hugs and prayers to you
bc101- Thank you for your kind and informative words. If your dr uses ultrasound for your concerns maybe thats a good step in a direction to start with.
I am so glad I have you ladies to communicate with ,although I wish we all werent here, its gives me knowledge, some peace and guidance that I appreciate so much!!
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DianneNC did they do blood work? and if they did did the blood work have any flags
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It is so scary to think every little pain is mets, and here I was blissfully unaware! My shoulder pain started off pretty minor last spring, really it just hurt when I put too much weight on it or reached over my head too quickly. It was easy to ignore, and I did ignore it for months. Then it got to where using my left arm for anything was uncomfortable, then finally got to the point where it hurt all the time. I had always heard bone mets were extremely painful, so it simply never occurred to me that this was mets. It hurt, but more of a dull ache that was easy to ignore but the pain never went away. I have since been told that if I have pain in the same place for two weeks, then I need to have it looked at.
So I guess, that is my only help to offer. If the pain you are describing is in the same place every day and it is not going away, you need to have it looked at. ILC doesn't image well in the breast, but it was clear as a bell in a bone scan, even to my untrained eye. I've had MRI, CT, PET and bone scan since November, and this "sneaky" ILC is showing up in every scan. Fortunately, my organs are still clear, and I still only have the one tumor. For a stage 4 diagnosis, I do have the best possible bad news.
I have blood work every month, but there is no indication of anything wrong in my blood. Even my tumor markers have never been above 22. Perfectly normal, even with known cancer going strong!
I appreciate all of your hugs, prayers and warm thoughts. xoxo
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Diane - what are they doing about the ILC in your bones? I have had pain in my shoulder for the last year, Oncologist not even interested in it jsut said oh its the radiotherapy,,,but it is getting worse and now I have a lump in front of my shoulder that is growing........the whole area hurts increasingly........?
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My treatment for my shoulder was cyber knife radiation to the tumor directly, plus I get Xgeva injections monthly and take Femara daily. I was told the radiation treatment was to address the pain, and the other drugs are to stop/slow the growth.
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Ladies I am so sorry to hear that mets has been found
Reading this scares the crap out of me, my left shoulder has been aching for a few weeks now. Also my left lower leg. I went to my pcp, she did u/s to check for blood clot thankfully there wasn't one. So she sent me to an orthopedic dr yesterday who did xrays, which showed nothing..now that dr wants to send me to a neurologist for a nerve conduction test and mri on my back ?? Uggh Im so sick of doctors,I wish I could see just ONE dr. I jave so many that I cant keep them straight lol.After reading your posts Im scared to mention the shoulder pain..
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