First, I had lumpectomy on Sept 4 09 and second trying to clear margin on sept 29, 09. I had DCIS from stage #0 go up to I because micorinvavise 1mm. I just wonder any women out there get treatment with herceptin drug or any other type with the same my condition ER- , PR- and her2+. nuclear grade #3.
3 Oncologists I talked to they said I don't need any other drug or chemo, or herceptin. I only need radiation and follow anually check up. I am not sure these are good ways. Please give me advice with your expericence. I am still worry especially I have 2 young kids 8 and 5 yrs old.
However, Oncologist told me if I want to have hercetin she can give me 2 does around 6 weeks but she doesn't know it would help prevent recurrent because no data it show help. Right now, studying for DCIS in trial 2 does heceptin durg. That why I am thinking but don't know for sure. do you have any idea?
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dee1961 Joined: Dec 2008 Posts: 1,172 |
Oct 29, 2009 06:03 pm
dee1961 wrote:
I have same dx as you except I was ER+PR-HER2+++. No chemo, no herceptin, no tamox or radiation. I had bilateral mastectomies which were my treatment. With a lumpectomy they may suggest radiation but that's all I have heard with a 1mm microinvasion. The side effects from other treatments outweighed the benefit with the mastectomies. Good luck to you. Love is never wrong
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LizM100 Joined: Mar 2008 Posts: 302 |
Oct 30, 2009 02:52 pm
LizM100 wrote:
K- just want to let you know that I had excatly the same diagnosis as you, Stage T1-mic (DCIS with a focus of less than 1 mm of a microinvasion) Er-,Pr-, but her2+++. I was 38 when diagnosed with 3 young children ages10, 5 and my youngest was only 8 months old. I consulted several oncologist who also consulted other oncologists ALL the oncologists said that the risks of chemo and/or Heceptin outweighed the benefits. I was healthy and had to no health concerns to consider. Some of the oncologists that I consulted with were Eric Winer from Dana Farber in Boston, Yale in CT, and I even e-mailed John Hopkins. To the best of my knowledge, there are no studies to support Herceptin's effectiveness without chemo and that's what my oncologist told me at my last visit a few months back. I had a lumpectomy and a re-excision to clear a margin and 33 radiation treatments. Negative sentinel node. I see a doctor from my team at least every 3 months. My team refers to medical oncologist, radiation oncologist, or surgeon. Annual bilateral mammograms, and a mammogram on the breast that had the cancer every 6 months. Also since my breasts are dense and very lumpy, my surgeon has done an anual breast MRI but I think that she said the she may not continue the MRI's for insurance reasons, which I plan on pushing for if possible. I also am followed by a naturalpathic physician who specializes in women's health and treats many of my surgeons breast cancer survivors. My advice is to seek out opinions and then follow your heart and make a decision that you can live with and never look back. I'm sure you've noticed that our particular diagnosis is VERY rare. Feel free to PM anytime. Wishing you the very best, Liz LizM
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daisy6 Joined: Sep 2008 Posts: 284 |
Oct 30, 2009 08:55 pm
daisy6 wrote:
I have the same diagnosis as you. I was told that only 6% of cancers have this diagnosis. I also sought out a second and third opinion, and my case went before the tumor board here in Milwaukee. I am not on any type of treatment plan other than seeing my ocon. every 4 months. I did have a BLM rather than a lumpectomy. I did ask for a referral for a dietitian. I have a wonderful one who specializes in breast cancer. This might be a good route for you. She is very up to date on studies and has a wealth of information on diet, supplements, exercise and cancer. A recent study showed that women that are ER/PR - and HER+++ can reduce their chances of recurrence by 43% by dietary changes alone !! Take Care - best of luck to you Pic is the REAL Daisy, we won an owner/dog lookalike contest !
Diagnosis: 8/15/2008, DCIS, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2+ |
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khanh Joined: Oct 2009 Posts: 6 |
Oct 31, 2009 12:14 am
khanh wrote:
Thank you very much to everyone. I am so happy and appreciate to hear from your experience. Now, I feel more confident than ever with radiation treatment and without other drugs. Liz, I am going to 36 yrs old. What year did you have diagonsis? After knowing you and other ladies I think I am on the right track now. Your Info is very valuable for me. Did you know anyone recurrent? Daisy, I would like to learn more about dietary you are talking about. Where can I get this info? Best to all (:))(:)(:)
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khanh Joined: Oct 2009 Posts: 6 |
Oct 31, 2009 12:35 am
khanh wrote:
By the way, did your doctors mention to you that if you have any symtoms like joint pain or long cough..... you need to report to doctor right way. Thanks |
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LizM100 Joined: Mar 2008 Posts: 302 |
Nov 1, 2009 02:17 pm, edited Nov 1, 2009 02:47 PM
by LizM100
LizM100 wrote:
K- I was diagnosed in 2008. Initially when I was diagnosed, I felt like such a misfit since I couldn't find anyone in the exact same boat as me. I didn't belong on the her2+ forum and yet I didn't in the DCIS forum either. As I stated earlier, finding others who are hormonally negative, her2+++, and having such a tiny miniscule microinvasion that is her2+ just didn't happen often at all. A little more common is being hormonally positive and her2+ but is also very rare. Only over the last few months I found a few members with the same diagnosis and I do feel better that their treatment was the same as mine. Dr. Susan Love said that cancer is a crap shoot and she is very right. With cancer, no matter what your treatment is, it will not cure you 100% and that's a fact. You have to follow your heart with treatment choices and move on with your life. Years ago they never tested for her2. In actuality the prognosis for microinvasive DCIS could be the same as plain DCIS but we'll never know if microinvasive DCIS wasn't tested for her2 years ago. Years ago equipment such as microscopes etc wasn't as sophisticated and didn't pick up microinvasions DCIS as easily, so it got lumped in with plain old DCIS and we all know that plain DCIS has an excellent prognosis. I forgot to mention that the majority of times DCIS is her2+++. After being diagnosed, symptoms that I would normally dismiss, I no longer do. Since my BC, I have had 2 skin basal cell carcinomas which due to my my heightened awareness fortunatly I had them checked out. Now I have to see a dermatologist at least evey 6 months for an entire body skin check. I know this happened due to the fact that in my HS and college days, I used to worship the sun. Thank God, I never went to a tanning both. I have had a few false alarms due to my heightened sensitivity. Most doctors have a 2 week rule, if you develop a new unexplained ache and or pain it's definitely a good idea to get it checked out. Chances are that it's not cancer related but it's always good to be on the safe side. With time you will start to trust your body again. Wishing you the very best, Liz LizM
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LizM100 Joined: Mar 2008 Posts: 302 |
Nov 1, 2009 02:21 pm, edited Nov 1, 2009 02:22 PM
by LizM100
LizM100 wrote:
LizM
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ZOO Joined: Mar 2009 Posts: 4 |
Nov 11, 2009 02:18 am
ZOO wrote:
Ladies, I'm in similar group, t1mic and Her2 3+. But I'm Er/Pr+. Dx 3/17/2008, high-grade DCIS with microinvasion in right breast when I was 37. I had mastectomy with SNB in April 16, 2008. Negative node and no radiations. I had reconstruction with silicone implant and gotten new nipple, Yeah! I wasn't recommended chemo, like other ladies. I did no chemo. Since I am hormone positive, I'm taking hormonal therapy. No chemo is a kind of standard for our group, so far. I believe my decision is the best for me. We did everything as possible as we could when we made decision. Trust ourselves! ZOO |
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