Team ILC Warriors
Comments
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As a lurker for months, I am glad to find this forum for ILC girls.
It's 10 years for me! I was diagnosed on Nov 5th, 2004. Stage 3 ILC with 9+ nodes out of 26 and a HUGE mass (8+ cm) in my right breast. I also had nodes that were matted together. I did chemo before and after a bilateral mastectomy with the right side being a radical. My chemo was TAC x 4 and then TAC x 2. I did 30 rads with every other one using a bolus. I was 47 at the time I was diagnosed and premeno. Chemo threw me into menopause. I did 10 months of tamoxifen and then switched to 2 years of Arimidex. I have been on Femara ever since and at this point I will probably continue with it as long as my bone density holds up. My side effects are not bad at all on it.
That's my story and I am sticking with it!
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Congrats, Jillian!
Anyone here use Letrozole which is supposed to be best for ILC?
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One year out for me today! Yay!
For those who are premenopausal and facing a prescription of tamoxifen .. . I've had no problems to speak of. I had some minor hot flashes in the first few months (mostly my legs/feet felt hot), and my menstrual cycle is a little wonky, but that might be happening anyway as I approach my mid-40s. No weight gain, joint pain, etc. (I actually have noticed a DECREASE in my arthritis since surgery/treatment - possibly I was in a ramped up inflammatory state fighting the tumor). So, don't be afraid of tamoxifen - it might not cause any significant side effects for you. And if you have intolerable side effects, you can always stop / do an oophrectomy and an aromatase inhibitor.
It does get better/easier. I really have no lingering physical effects other than the obvious (lack of boobs) and some left over tan/discoloration from the the radiation. My arm/shoulder mobility took a while to recover, but at about 10-11 months post surgery and 6 months post rads, I felt like it was close to normal again.
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Jojo, yes, I am letrozole/femara (same drug, different name). However, the study that established femara as better for ILC just happened to pick that AI. Most docs assume the AIs as a class are preferable for ILC. I had my ovaries out in order to be able to go straight to an AI
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Jillian, YEEHA !
Thanks for the inspirational post....love to hear it.
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Jillian - CONGRATULATIONS!!! That's so awesome!!
Thanks so much for posting!!! 
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Hi all. I went straight on to Femara/Letrozole as I didn't want to go on Tamoxifen. They wouldn't take out my ovaries so I take monthly Zoladex injections. Side effects are okay, don't really have a choice so put up with them.
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Momine....I forget, why did you do ovaries out instead of zoladex or Lupron?
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Jojo, I was close to menopause anyway. My mom has had ovarian cancer and I was not keen on the injections. It is not as if I am going to regain ovarian function anyway.
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Are the injections uncomfortable or painful...excuse my ignorance
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I am 47, I wonder if it's just better to just take the ovaries?
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I wanted my ovaries out but they refused because I am 53 and should be nearing menopause. So I thought Zoladex injections were a good idea. They don't hurt in fact I give them to myself every 28 days, I don't even bother with numbing ointment.
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I had letrozole before mastectomy and it didn't work for me though studies have shown it can work well. I am very pleased to have found so many ladies with lobular as I think we do have a different experience because it's so sneaky. I feel really lucky as a second tumour was found by chance in scar tissue when I had a second op to remove nodes. It was not found with the various scans I have had. So just a warning to be vigilant after mastectomies as bc can appear in scar tissue. Another positive for me was that these nodes were negative. I asked about having regular MRI scans and was told they pick up too much with the result that biopsies, ops etc are done only to find they test negative. I have heard we lobular ladies do well and it's very encouraging to read the posts of ladies diagnoses several years ago. That is a great help as I go through treatment. Not looking forward to taxol. Start next week.
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Jojo, I am sure the injections are no big deal. I just didn't like the idea. I also didn't like the idea of having to worry about ovarian cancer. It is a very personal thing. You should discuss with your doctor. I would also urge you to find a good oncologist you can talk to about all this. It is a steep learning curve.
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Hi ladies, just wanted to say hello, Im also an ILC warrior. so glad I came across this thread
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Mrs. Darcy thank you for your kind words, makes me do a lot of thinking. I appreciate your taking the time to reply. I greatly appreciate all your advice
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Mrs. Darcy thank you for your kind words, makes me do a lot of thinking. I appreciate your taking the time to reply. I greatly appreciate all your advice
Tania-Thank you also....I appreciate all 3 of you responding with your comments......we are fighters and we will get through this....one day at a time for now God Bless all of you!
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Mrs. Darcy thank you for your kind words, makes me do a lot of thinking. I appreciate your taking the time to reply. I greatly appreciate all your advice
Tania-Thank you also....I appreciate all 3 of you responding with your comments......we are fighters and we will get through this....one day at a time for now God Bless all of you!
Clair in AZ thank you too for your input
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Jillian, thank you for the posting. I had positive nodes too, and hearing that you are doing so well (with a similar tx protocol as mine) makes me happy. Sometimes thinking of those positive nodes still spring up and bite me in the...well, you know. I get scared.
Claire in AZ
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i had positive nodes but see it as positive as they were bouncers.......
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Yes I worry about the positive nodes thing too. You always read about people saying " thank goodness it wasn't in the nodes" but as you say Lily they were the bouncers. I have a friend who was HER2 + and had 23 positive nodes and is 7 years out doing very well, she always says they did their job.
Thank you Jillian for coming back and sharing your story, it means so much to some of us that are fairly new to this roller coaster ride.
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Bouncers! I love that, and it helps to think of them that way. Yep, I sometimes still get a little bummed out when I see a status or hear a friend dx with b.c., but "it wasn't in the nodes". Then I think, sh*t: why did it have to be in mine? It's kind of like not being allowed to join the "good clique". Kind of.
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Claire, I know what you mean. I have learned of about a half dozen women in my community/circle of friends who also have had breast cancer, which I also learned was DCIS. In a sour-grapes spirit, I think "you got the really good kind!"
Not complaining here ... Had my annual 3D mammogram yesterday ... Uneventful (though I asked the radiologist if I still have dense breasts, and he said yes, but not the worst category of dense -- for what that's worth).
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Okay...so, I am sooo confused now.So, as some of you know, I had a bone marrow biopsy last week that came back positive for breast cancer cells. Stage 4.
I then had a PET scan last week. I have had bad back pain since surgery and had a back xray which showed extensive arthritis. I am on Dr. Wongs herbs for two years and he has been concerned that my red/white and platelet counts have not risen. They are not super low, but a tiny bit below the norm. They have always been stable. My family doctor felt my blood work was just fine but Wong wanted me to see a hematologist to get this checked.
So, today I find out I have a CLEAN scan. Marrow mets don't even show up, but they are obviously there since I had the marrow biopsy confirm this. My oncologist actually said he thinks he made a mistake ordering the marrow biopsy as my blood work was not that low and there are only 5% cancer cells in my marrow anyways. Status is still ER+/PR+ but they have suspicion I may be HER+ BUT Onc didn't get enough marrow sample to confirm! Soooo, now I am irritated. Do I push to have another biopsy to see if I am HER+ so I can be on Herceptin? Do I just do Tamoxifen which he suggests as to follow standard protocol? He didn't recommend Lupron/post menopausal hormonals as he thinks just start from the beginning with Tamoxifen and rule things out from there. He also wants me off of the herbs while I am on Tamoxifen. I am afraid to abandon the herbs as maybe this is what has kept me so stable. Wong believes this was in my marrow from get-go as my blood panels have always been low, suggesting marrow involvement.
I don't know which way to go!!!
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Jojo, I strongly suggest that you find a different onc to give you a second opinion.
It is not unusual for cells to tests ambivalently on the HER thing. It happened to me too after the biopsy they did on my breast. My doc did some second test to make sure, and that showed the cells HER-negative.
Again, you need a second opinion. You also need an onc with whom you feel comfortable discussing all this.
However, whatever the deal ends up being, a clean scan is always a good thing. Also, having cancer cells in the bone marrow does not necessarily mean stage 4 from what I can understand, but you need to talk to an onc about this. Apparently it is fairly common to have cancer cells in the bone marrow at DX, but in patients who get treatment, they often get wiped out. It sounds as if hormonal treatment could greatly improve your chances of avoiding an actual metastasis. So whether you choose tamox or an AI, with either lupron or an ooph, it could probably help you significantly. Here is a recent study on the presence of cancer cells in the bone marrow: http://jco.ascopubs.org/content/early/2014/10/30/JCO.2014.56.9327.short
You also need Dr. Wong to explain to you exactly how his herbs act in the body. Being told that they "balance hormones" is not enough. You need to know exactly how they act, in order to judge whether to continue or not. Obviously the herbs have not killed the cancer cells so far. Alternatively, have Wong talk/email with your 2nd opinion onc and have Wong explain the action of the herbs to the onc.
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JoJo - I strongly agree with Momine.
It's not easy to change doctors, or hospitals - a very daunting task - but I had to do it this year and I am very grateful. My change had nothing to do with inconsistent dx's - but more with an oncologist who never saw me or answered me. My new onc is fabulous, straight shooter and knows his stuff !! And he sees me every 4 months contrary to the old one STILL not having seen me since Dec. 2013.
Please take the time to get a second opinion - and also have Mr. Wong speak with the new onc, as mentioned by JoJo.
We are our only true advocates when it comes to our health - a supportive and knowledgeable team behind us just makes this journey a little more easier !!!
Hugs,
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Thanks Momine and Darcy!Wow, interesting info and a bit of a relief that maybe I am catching this at a great time. I am definitely going for a second opinion.
The Wong thing...I don't know what to do. He is a very respected breast cancer researcher. BUT, he is not one to call an Onc and talk about what's in his herbs...he keep a VERY low profile. I know...it is weird. And, people may think it's crazy but I totally believe in his 'protective' herbs. My lymphedema is always so much better when I take his herbs and my menstrual cycles have gone from super heavy to very light. Dr. Wong advised me to take an anti-hormonal from the beginning with his herbs. He has never been against that part of treatment. I was just so afraid of the Tamoxifen due to my family history of uterine cancer. I am also a very active/busy wedding photographer who cannot afford to have such side effects of bone pain/fatigue etc.
My oncologist was saying that the ALS have worse side effects! Is anyone here finding that to be the case? I am leaning towards Lupron and an AL and Wong prefers the ALs. My onc just keeps saying it's stupid because it would age me faster etc...
I will get a second opinion, I think that's my next step. Thanks so much for your help!!!
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Jojo...my aunt had 2b idc with 3 positive nodes, had chemo/rads...she did a ton of research about natural treatments and whatnot and found a natural supplement called IP6...shes been taking it for about 5 years now and she swears by it !! I am also going to start taking it because of the research I did on it...it seems like a no brainer...thought you may be interested in it too
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Hi ganzgirl...Yes! I have heard of IP6 and even took a cycle of it..Of course, Wong thought his herbs were enough so I wanted to save money and go off of it...I will look into it again!0
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