Posted December 24, 2008 By DorisG
I was just diagnosed with lobular breast cancer and wanted to hear about other experiences with the decisions related to this type of cancer.
Any one out there?
Posted December 30, 2008 By Willow
Thank you for your message. We notice your message has not had a response as yet. Willow-talk is a new community and our membership will grow quickly. In the meantime, should you wish to discuss any aspect of your diagnosis, please call us toll-free at 1-888-778-3100 to speak with a peer counselor who is a breast cancer survivor . If you prefer, you can email us at support@willow.org. And please, keep checking back! As the Willow-talk.org community continues to grow, more and more people affected by breast cancer will be sharing their stories.
Posted January 24, 2009 By Jo
I have no words of wisdom as I have just been diagnosed myself. Maybe you have some for me....I am feeling very lossed .
Posted January 29, 2009 By chickie
Hello ladies,
I can't believe that it is my turn to help. I was diagnosed on December 19th Jan 2 had a mastecomy and I hve my first chemo scheduled for Feb 9th. I can tell you that a positive attitude is your best bet but lately it has been hard. But it is also ok to have a hard day. Surround yourself with those you love. Be kind to yourself and seek out as much information as you can. I have lobular carcinoma as well. Stage 2.
I enjoy using the website for comfort and support. My best advice is to love yourself right now and do for yourself whatever brings you peace.Welocme to the sisterhood!
chickie
Posted March 4, 2009 By Lisa
What an amazing insipiration for women coping with this bridge to cross. I had a lumpectomy on Feb.17/09 and senitinel lymph node dissection. I will be receiving my results of pathology tests on Thursday. I am 36 years of age and have a son 7 years of age and a daughter 4 years of age. I was diagnosed in Jan. 2009. No history of breast or any kind of cancer in our family.
I have a follow up appt. this Thursday with the surgeon and will have more info. as to treatment path.
Any kind of postitive encouragement is greatly appreciated!
Posted April 6, 2009 By carm
13 years ago I was dx with DCIS and following my biopsy i was told that i also had lobular cancer. I want to give you encouragement because I have not had a recurrance in 13 years and I am doing wonderful. I had 8 chemo treatments & 25 radiation
treatments ...some days were good others not so good. Later I had my other breast removed since they told me that lobular cancer can possibally spread to the other breast within 2 years. keep positive...ok to have an off day too...give yourself a hug.
carmelita
Posted January 11, 2010 By esperanzas
I was diagnosed with ILC in November'09. I have had a lumpectomy and sentinel node biopsy, and I met with my oncologists last week to discuss the patholgy report and treatment to follow. My tumour was an odd shape and turned out to be larger than I was first told, and there was also quite a bit of LCIS present. (LCIS is basically considered a "pre-cancer", and would probably be dealt with by the treatment fo the ILC - you oncologist can answer that) But I had the great good fortune to be 100% ER+, node negative and HER2-, so this was a pretty low-risk, slow-growing, non-aggressive cancer. I'm almost embarrassed to talk about it here, with so many others whose results were so much worse.
Because of the low risk and my age, I told my oncologist that I would prefer not to have chemo - a quality of life decision that I hope I will not come to regret. My oncologist was not surprised by this, and agreed it made sense for me. (That's something only the individual and her doctor can decide, so I'm certainly NOT suggesting it as an alternative for anyone else.) So I will be doing a course of radiation starting next week, followed by 2 years of Tamoxifen and then 3 years of AIs.
Nevertheless, it's still pretty scary. Some people are badly affected by the tamoxifen and AI side effects and they seem to be the ones who most often post on these forums - I guess it's a cry for help and support - so that's what you read about most. But I've talked to a lot of BC survivors who came through these hormone treatments relatively easily. And I've also talked to women who did the chemo, and even though it might not have been much fun, they came through and survived. That's the thing to remember - fight it with whatever weapons are available and keep positive no matter what. Try visualizing the little PacMan figure chomping away at the cancer cells and making them just disappear.
Posted January 12, 2010 By Michelle
Hi
I was diagnosed with invasive lobular bc in July 2009. I had a lumpectomy and lymphnode surgery in Aug. I just finished my 5th round (out of 6-one more to go!!) of chemo. I did 3 rounds of FEC and now completing 3 rounds of Taxotere. I found the first round really scary but, it did get easier after I knew what to expect. I will be undergoing a mastectomy following the chemo because my tumor was odd shaped and bigger than exepected (often the case with lobular). I am very much leaning towards a bilateral mastectomy. Then the surgery will be followed by radiation and the Tamoxifen.
Like many of you, I am also a mother of two young children (4 yrs and 18 mths)- I have found that part the most devasting. I too was a complete control freak before all this happened. I find very difficult to deal with this and keep things as normal as possible for my kids. I have a great support system in my husband, parents and friends. I asked for my chemo to be on Fridays so my husband would have the next two days off (without affecting his holiday/sick days as much) and my parents take the kids on those weekends so I have a couple days of quiet when I can just recuperate and be miserable if need be.
I see the end of the chemo in sight- like many of you, I did not think the day would come. I still have quite a ways to go but, I am holding on to putting this behind me one piece at a time.
These days, I find the hardest thing is feeling disconnected to the REAL world for too long and wondering if I'll ever fit into it again... I guess we will all have to find a new normal.
Another thing... I am totally amazed by how all of you have rallied on this board today- I am taken aback by our spirit as women. We are much stronger than we think or feel some days.
