ADH Club
Comments
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think you!!!
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Good luck Robinda I guess we will be starting tomaxifen at the same time. I don't know what the treatment for dcis is but 3 mm is very tiny.
I'm doing my count down , 2 weeks til mri. I got my approval letter from the insurance company yesterday. SMH!!! Thank God...
Hang in there!!
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thank you!! Good luck on mri!! The actual procedure is not bad at all..
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why is my super top dog Breast Oncologist at Dana Farber Cancer Hospital telling me that MRIs no longer indicated yearly for ADH DX? New studies out from MSK in anew York suggesting 2-3 professional exams per year, 1 Mmogram and MRI ever two years?
Anybody else heard this
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My surgeon said mammogram every 6 months Mri once a year for 2 years. I have adh with 3 mm dcis.
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not what I am hearing from two MOs so I wish there was some standardized protocol
Here
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Robinda, I'm guessing that there actually would be no difference in treatment whether ADH or low grade DCIS. The 3mm size is probably too small for the recommendation of radiation. In my own case, although 3 different pathology reports from different institutions yielded 3 different conclusions, every doctor I consulted with (and there were a lot!) assured me that the treatment would be the same regardless.
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Ddw, the protocol I have followed for the past 5 years is very similar to new recommendations: mammo in the fall, US in the spring; following year, mammo in fall again, and then MRI in spring. So, yes, MRI every 2 years. What doesn't make sense to me is why the MRI would be eliminated after 2 years when the risk actually increases with time
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Hi my mri appt just got moved up to March 15 something to do with me getting my period today( I know TMI) and the 24th would be to late. I'm happy I'm going to get it over with sooner.
Praying for good results...
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yep they schedule around your period. Fingers crossed!!
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definitely wishing you a no problem
Result
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Thanks Robinda and Ddw...
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Hi ladies everything went great on my six month follow up. Birads2 some cysts and scar tissue but nothing else. Very scary day but I made it so glad it's over.
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turns out hard ill-defined lump in my left breast is stage 2 invasive lobular carcinoma. Found out with a morning call March 18. Now reeling as double mastectomy with sentinel lymph node biopsies scheduled for April 6. And reconstruction can't be right away, for risk of needing to go back in and from damage from radiation. So not the result I wanted to hear about biopsy #4. Scared about lymph node status, and long term survival rates for ILC patients.
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I just had my 6 month post op MRI..the first mass I have removed through a wire guided excisional biopsy was 3.9cm containing both ADH and radial scar.
I got the results on Friday of my MRI. They found a 1cm mass that they want to mammogram, ultrasound, and core needle biopsy, and then most likely leading to surgery.
I'm nervous that if there's already a mass that's back within 6 months of surgery to remove the first one, that I'm headed towards a viscous cycle of constant scans, biopsies, and surgeries ):
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Good luck to all of you. I wish you the best. I am also on the roller coaster.0 -
I have my local pathologist saying I have adh but borderline and Yale saying dcis grade 1 with necrosis. had lumpectomy with close margin.Now I have to decide on radiation or not? First oncologist said yes because of my age I'm 46. What to do??
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Oh Robinda, I am thinking of you! I am 49 and last you and I exchanged comments I was still awaiting more biopsies. I am now scheduled for an April 6 double mastectomy with biopsise of sentinel lymph nodes. I chose this more conservative approach due to biopsies showing lots of ADH clusters in one breast and ALH, LCIS and stage II ILC in the other. MRI is tomorrow. You know what's right for you--if it were me I would go with the radiation. It's not as debilitating as chemo cabn temporarily be, according to what I've learned, and can really target areas to protect you. I wish you warmth and positive energy whatever you decide.
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thank you!! I see another oncologist soon and will most likely go with radiation. Wishing you well!!
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Dear Robinda: I am glad that you are going for a second opinion. I know that radiation is warranted for DCIS but I have not heard of radiation being recommended for ADH. ADH significantly increases one's chances of getting bc but it is a benign condition. Once an area is radiated, it cannot be radiated again. You may want to talk to your doctor about hormone therapy (tamoxifen or AI's). It sounds to me that radiation may be over treating ADH. I am not a doctor but there are serious side effects from radiation. I don't even know whether radiation works for ADH because ADH is not cancer. Please ask your doctor this question. Good luck.
I am telling you this because I was diagnosed with extensive ALH. (ALH is in the lobules and ADH is in the ducts. It is not the same thing but it is similar.) I had a double lx which removed my two primary bc's as well as removing the ALH (and FEA and PASH). I had whole breast radiation after my surgery. I have been subsequently dx with more ALH in the breast that was radiated. My MO told me that the AI's that I am taking should prevent my ALH from becoming malignant. Hormone therapy may be a viable option for you. I wish you the best and I am sending you hugs.
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Thank you for your response. I was diagnosed by Yale with dcis grade 1 with necrosis. Another pathologist said adh but very close to dcis and could be interpreted dcis. So I have to decide which way to go. I am also going to talk to an oncologist about tamoxifen.
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Hi Robinda I have had you in my thoughts as these days. It's good you are getting a second opinion even a third is good. You have to go with your instincts on what is right for you. There have been women according to the tech that did my mammogram that she sees women that have been dx with dcis and just come back every year. I think that's crazy but I do think tomaxifen is a good option . I know with dcis radiation is recommended but not in all cases. This is a very difficult dx and I've learned that when it comes to bc nothing is easy. I hope you can get all the answers you need so you can make the best and right decision for you.
Good luck
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Dear Robinda: Good luck. You have to do what is right for you. I am sorry that you were diagnosed with DCIS. I am glad that you have good doctors who will recommend the best course of action. With DCIS, I would take hormonal therapy and rads. Hugs.
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thank you!
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new information suggests that DCIS be treated more conservatively . Lots of women now take a more watchful approach to DCIS. It is though in some circles that this usual protocol of radiation may be over treatment. There are very recent articles about it. Good luck. It's a very hard call for everyone
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very interesting
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I forgot where I read it. Maybe somebody else here can provide the sitation
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Ddw, treatment recommendations haven't changed.
The medical community is starting to believe that in the future some women with DCIS (perhaps small & low grade) MAY be able to just be closely monitored and observed IF & WHEN they have figured out how to determine which DCIS have the potential to become invasive cancer and which are likely indolent and will never progress. We are not there yet
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Ddw79 I'm With you I have read the same thing. I guess it's like taking tomaxifen for adh and radiation for dcis. My mammogram tech did say they're a lot of women taking the 6 month approach. I really don't know what I would do.
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I've been reading a lot about docs who are reconsidering DCIS lately . I will post the next time I see it
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