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Topic: Advocate registration open for ILC focused educational course

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

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Posted on: Mar 27, 2018 11:07AM - edited Apr 16, 2018 05:30PM by Hipline

Hipline wrote:

Lobular Breast Cancer (ILC) and the Lobular Breast Cancer Alliance (https://lobularbreastcancer.org) will be featured on the final day of Harvard Medical School's annual comprehensive educational course.

Breast Cancer: New Horizons, Current Controversies

July 12 – 14, 2018

Boston Marriott Long Wharf in Boston, MA

This three-day annual course is organized as an educational opportunity for oncologists, oncology nurses, nurse practitioners and other health care providers interested in the care of women with breast cancer.

Lobular Breast Cancer will be the focus of this course on Saturday July 14th. Patient advocates are invited to register for and attend this course using a special discount rate for advocates only. The lobular specific agenda will include:

Immunotherapy in Breast Cancer

ER+ Breast Cancer with a Special Focus on ILC

Imaging, Pathology and Surgery

Biology and Special Subtypes

The Lobular Breast Cancer Alliance and the Importance of Patient Advocacy in Clinical Research

How to Register for this Course as an Advocate

Patient advocates must register directly through the Breast Cancer: New Horizons, Current Controversies registration page. Advocates can attend the full three-day breast cancer educational course, or the Saturday July 14 ILC sessions only.

Advocates who register can use a discount code (DISCOUNT50) on the payment page of registration for a special patient advocate registration rate of $50. This code is intended for PATIENT ADVOCATES ONLY. When completing the registration form, advocates can select "other" in their profile under medical specialty and profession, and may also write in a hospital affiliation "LBCA" if needed.

Please review the Course Website for comprehensive course description and agenda, online registration and to find information about hotel discounts and course location.

Patient Advocates: PLEASE READ BEFORE REGISTERING What is a Patient Advocate for ILC?

A patient advocate can be a patient, caregiver, survivor or co-survivor of ILC who is working to advance research and improve patient outcomes for current and future patients. Patient advocacy can take many forms:

  • Research advocates partner with researchers and institutions
  • Educator advocates share information about ILC in their communities, online or within breast cancer organizations to raise awareness and share quality information about ILC
  • Peer mentors partner with qualified peer support services to help other patients one-on-one
  • Fundraisers support outreach and ILC research by raising money to support critical needs
  • Public policy advocates work to change health policy.

LBCA welcomes all established patient advocates as well as those who are interested in becoming new patient advocates for ILC. We will share more information about ILC patient advocacy opportunities in the coming months.

Why attend this Educational Session?

Patient advocates who attend can learn about the science and clinical care of lobular breast cancer. They will meet other patient advocates working to advance research and patient care for ILC from around the country. They will learn about the Lobular Breast Cancer Alliance and how to get involved to advance ILC research and patient outcomes.

How much will it cost to attend?

Patient advocates receive a special discounted registration rate, however because LBCA is a new organization and only recently eligible to fundraise there are no scholarships available to assist with travel to Boston or hotel costs.

We encourage you to use this thread to contact others if you're looking for a roommate or to ask questions that the LBCA will try and answer. For those who can't attend, we are working with course organizers to videotape the Saturday July 14 ILC portion of this event and hope to make the content of the ILC Sessions available online in our Resource Library.

What Patient Advocates can Expect

Please know that this event is NOT an appropriate forum to seek personal medical advice from course faculty or attendees, or receive personal medical consultations. All patient advocates will be expected to REFRAIN FROM ASKING FOR PERSONAL MEDICAL ADVICE ABOUT THEIR DIAGNOSIS OR COURSE OF TREATMENT.

About the Course Content

Advocates should be aware that this course is created for and the content is tailored to physicians and trained health care workers and the curriculum and presentation is not geared for general patient education.

Patient Advocate Gatherings

LBCA plans to facilitate opportunities to gather advocates on Friday night July 13th and Saturday afternoon July 14th. We hope you will be able to join. We will communicate more details to registrants closer to the event.

Questions?

Please contact course organizers directly if you have problems registering on the website, hotel reservation questions or questions about course logistics. CEPrograms@hms.harvard.edu or call (617) 384-8600 Monday–Friday, 9 am–5 pm (ET)

Pleomorphic ILC, Onco DX score 16 Dx 11/16/2010, ILC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/13/2010 Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 1/31/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/23/2014 Femara (letrozole) Surgery 12/5/2018 Mastectomy: Right; Reconstruction (right): Silicone implant
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Mar 28, 2018 04:43PM vlnrph wrote:

Fabulous opportunity at an unbelievable price! Is it really only $50 for all three days?

I may have to rethink my summer travel plans. It is amazing to see so many specific ILC sessions on a single program. Thanks for your work in coordinating this effort and keeping us up to date

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Mar 29, 2018 06:42AM WndrWoman wrote:

Thanks for the posting. I have signed up and will probably attend some sessions each day.

Dx 10/2014, ILC, Left, 1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/15/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 11/11/2014 Arimidex (anastrozole) Radiation Therapy 12/16/2014 Whole-breast: Breast
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Mar 29, 2018 08:35PM - edited Mar 29, 2018 08:38PM by leighseattle

This Post was deleted by leighseattle.
Dx 10/25/2012, ILC, 2cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Mar 29, 2018 08:36PM - edited Mar 30, 2018 11:58AM by leighseattle

We hope to see you there. Lots of opportunity to advance research and refine treatments for ILC. We are really excited about the opportunities this meeting in Boston can bring. Also, just want to remind folks that Harvard and course organizers generously made this discount available to make it more affordable for PATIENT ADVOCATES. We ask that everyone respect the intent of this gesture and use the discount code with discretion. Thank you!

Dx 10/25/2012, ILC, 2cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Apr 2, 2018 05:33PM Hipline wrote:

Hello,

We have some updated news from the Boston main organizers:

Please contact course organizers directly if you have problems registering on the website: CEPrograms@hms.harvard.edu or call (617) 384-8600 Monday–Friday, 9 am–5 pm (ET). Questions about hotel reservations only can go directly to Claudia_Cassano@dfci.harvard.edu.

We hope to see many of you there! Thanks.

Pleomorphic ILC, Onco DX score 16 Dx 11/16/2010, ILC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/13/2010 Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 1/31/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/23/2014 Femara (letrozole) Surgery 12/5/2018 Mastectomy: Right; Reconstruction (right): Silicone implant
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Apr 2, 2018 07:12PM momand2kids wrote:

So great to see this-my surgeon AND my oncologist are both speaking. I am not sure I could call myself a patient advocate although I do walk through this process with individuals when asked. Is there any other way to register for this or is it prohibitively expensive?


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Apr 2, 2018 08:47PM Hipline wrote:

That is so great that both your surgeon and oncologist will be speaking! Advocates wear many hats and you certainly seem to fit the role of one who helps others navigate the waters. The other registrations are for medical doctors and researchers and they receive continuing educational credits - so yes, it's a little expensive.


I hope you register as an advocate and come for the Saturday presentations. Your ten years of BC experience is valuable to us all!

Pleomorphic ILC, Onco DX score 16 Dx 11/16/2010, ILC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/13/2010 Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 1/31/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/23/2014 Femara (letrozole) Surgery 12/5/2018 Mastectomy: Right; Reconstruction (right): Silicone implant
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Apr 3, 2018 05:28PM WesternGirl wrote:

Hi - I have booked a room with two queen beds for the night of July 13th so I can attend the lobular day. It was 374.25 USD with tax so if anyone wants to go halfsies let me know (1 night only) Thanks - Brigitte from British Columbia

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Apr 3, 2018 06:51PM - edited Apr 4, 2018 11:39PM by hugz4u

Looking forward to you reporting back. My hockey puck size lobular kept escaping 4 years mammos because they just said I had dense breast. Not until I got dimple did they even blink a eye. Now it's my young daughter I have to watch with her dense breasts.

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Apr 11, 2018 11:51AM WndrWoman wrote:

If you are flying into Logan, you can take the MBTA Silver Line bus for free from just outside your terminal to South Station. Then a cab or a just under a mile walk (mostly flat) to the Marriott Long Wharf. Unfortunately, it is not free going back to Logan.

Dx 10/2014, ILC, Left, 1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/15/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 11/11/2014 Arimidex (anastrozole) Radiation Therapy 12/16/2014 Whole-breast: Breast
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May 9, 2018 09:48AM momand2kids wrote:

Hi

Have tried to register several times as an advocate-but it keeps charging me $270--- so I may not be there!!! Hopefully some of you can send back the information about this conference!!

thanks


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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May 9, 2018 10:04AM Hipline wrote:

I am so sorry to hear this! On the first page of registration you have the option in the pull down menu to choose "Advocate". This should give you a Discount option later in the registration where you enter "DISCOUNT 50".

I hope you try again and if you continue to have problems you can contact the course organizers directly : CEPrograms@hms.harvard.edu or call (617) 384-8600 Monday–Friday, 9 am–5 pm (ET)

We hope to see you there. Thank you!


Pleomorphic ILC, Onco DX score 16 Dx 11/16/2010, ILC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/13/2010 Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 1/31/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/23/2014 Femara (letrozole) Surgery 12/5/2018 Mastectomy: Right; Reconstruction (right): Silicone implant
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May 9, 2018 11:31AM momand2kids wrote:

Hipline-

thanks--I had the code wrong--I was able to register!!

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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May 9, 2018 01:05PM Hipline wrote:

Great news momand2kids!! Look forward to meeting you!

Hipline aka Lori

Pleomorphic ILC, Onco DX score 16 Dx 11/16/2010, ILC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/13/2010 Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 1/31/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/23/2014 Femara (letrozole) Surgery 12/5/2018 Mastectomy: Right; Reconstruction (right): Silicone implant
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May 18, 2018 06:05PM Hipline wrote:

The LBCA (lobularbreastcancer.org) would like to invite all the Advocate attendees who will be at the Boston education course to stick around on Saturday July 14 after the last agenda item for another hour and a half to talk about ILC advocacy.

That would make the end of the day now 5pm on Saturday July 14. We are trying to get a count of how many advocates will be there. If you will be staying until 5pm Saturday (officially the agenda says adjourn at 3:30pm) please let me know. PM or here. Thank you!

Pleomorphic ILC, Onco DX score 16 Dx 11/16/2010, ILC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/13/2010 Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 1/31/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/23/2014 Femara (letrozole) Surgery 12/5/2018 Mastectomy: Right; Reconstruction (right): Silicone implant
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Jun 5, 2018 08:44AM momand2kids wrote:

I am planning to be there.... I can stay later.


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Jun 5, 2018 04:03PM Hipline wrote:

Thanks momand2kids. We look forward to meeting you!

Lori

Lobular Breast Cancer Alliance

Pleomorphic ILC, Onco DX score 16 Dx 11/16/2010, ILC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/13/2010 Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 1/31/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/23/2014 Femara (letrozole) Surgery 12/5/2018 Mastectomy: Right; Reconstruction (right): Silicone implant
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Jun 7, 2018 10:21AM WndrWoman wrote:

I will be there and I can stay. Melody Allen

Dx 10/2014, ILC, Left, 1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/15/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 11/11/2014 Arimidex (anastrozole) Radiation Therapy 12/16/2014 Whole-breast: Breast
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Jun 13, 2018 08:20PM Hipline wrote:

Thanks Melody, we look forward to seeing you!

Pleomorphic ILC, Onco DX score 16 Dx 11/16/2010, ILC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/13/2010 Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 1/31/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/23/2014 Femara (letrozole) Surgery 12/5/2018 Mastectomy: Right; Reconstruction (right): Silicone implant
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Jun 20, 2018 12:04PM Yogalady333 wrote:

Hi--just found out about this conference and am planning on attending and going to the advocate session on late Sat. afternoon.

Just made a hotel reservation for Wed July 11, Thurs. July 12, and Friday July 13--at the discounted conference rate of $349-

may stay an additional night Saturday if plane schedule doesn't work with group meeting afterwards.

Looking for a roommate for three or possibly 4 nights. Someone who's a non-smoker and does not like freezing air conditioning at night!


Dx 5/18/2011, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2-
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Jun 20, 2018 01:04PM - edited Jun 20, 2018 01:11PM by jackel

Hi Yoga Lady,

I'm so glad you found out about the conference! I may also be looking for a roommate. I was only planning to stay 2 nights in the hotel -Thursday and Friday mostly due to finances if that interests you. I did not make reservations yet. I will be attending the entire conference. I am actually coming to Boston on Tuesday for a Rr. appt. on Wednesday and have a free place to stay near Dana Farber for those 2 nights. I leave Sat night. I am on the steering committee of the LBCA and have contacted others on my committee as well, but wanted to get the conversation going with you. I live in CA nonsmoker, hate air-conditioning as well. I do Yoga!

Lets keep each other posted. I will be making final plans in the next few days.


Dx 2/2013, ILC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, 1/1 nodes, ER+/PR-, HER2- (IHC)
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Jun 20, 2018 01:22PM Yogalady333 wrote:

Hi Jackel,

I just found out that I can get a late flight out on Saturday--did not want to miss the meeting that goes till 5pm! So I've changed the reservation to the first three nights-Wed, Thurs and Fri.

That would be great if you can share a room for Thursday and Friday nights as the room rates are rather expensive even at the discounted rate.

Please keep in touch--I only found out about this conference this morning!

Dx 5/18/2011, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2-
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Jun 20, 2018 01:31PM Yogalady333 wrote:

Oh and I just noticed you do yoga too--a bonus!

Dx 5/18/2011, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2-
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Jun 20, 2018 02:55PM jackel wrote:

Great!

Just curious if you found out from the FB page or the LBCA website? I will let you know for sure in the next couple of days. My plan was to take an uber to the hotel Thursday morning (probably a bit later than the conference start) from where I am staying. I wish I could swing all 3 nights but hard to turn down the free place!

Dx 2/2013, ILC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, 1/1 nodes, ER+/PR-, HER2- (IHC)
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Jun 20, 2018 03:07PM Yogalady333 wrote:

I didn't find out from either the FB page or the website--there was an article in today's Chicago Tribune that got me googling the topic and led to discovering the conference.

I understand the preference for a free place to stay--so let's just keep in touch and we'll see how it works out!

Susan

Dx 5/18/2011, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2-
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Jun 23, 2018 09:49AM Staceybee wrote:

I just signed up for the conference. I think I will only be able to attend the ILC day on Saturday as I expect to be starting daily radiation that week. Look forward to meeting all the patient advocates!

1/2 SN w 1mm "micromet"; lots of LCIS found in surgery; oncotype=13; age 52 at dx Dx 4/24/2018, ILC, Right, 1cm, Stage IB, Grade 2, 1/2 nodes, ER+/PR+, HER2- (IHC) Surgery 5/22/2018 Lumpectomy: Right Radiation Therapy 7/10/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 8/3/2018 Arimidex (anastrozole)
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Jun 27, 2018 02:18PM - edited Jun 27, 2018 07:23PM by jackel

Hi Yogalady,

I sent you a pm. Hope you got it. Im interested in sharing the room for all three nights if you are still interested!

Julia (Jackel)

Dx 2/2013, ILC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, 1/1 nodes, ER+/PR-, HER2- (IHC)
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Jun 29, 2018 01:18PM - edited Jul 13, 2018 10:16PM by BettsCubs

Arriving on the 11th,staying at the Marriott Long Wharf,plan on attending Meet and Greet Friday night and staying for Patient Advocacy session Saturday. My husband and I added a day before and two days post conference for sight-seeing. 

Dx 9/6/2016, ILC, Left, 6cm+, Stage IIIB, Grade 2, 6/9 nodes, ER+/PR+, HER2- Surgery 9/6/2016 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left Chemotherapy 10/12/2016 AC + T (Taxol) Hormonal Therapy Femara (letrozole) Radiation Therapy Breast, Lymph nodes, Chest wall
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Jul 1, 2018 10:34AM - edited Jul 1, 2018 03:20PM by Moderators

Hi Julia,

Sorry have been out of town on an unexpected trip--yes, that would be great if you can share the three nights!

The conference fee is really reasonable but the hotel is just too darn expensive for one person--so let's do it together--

I have a friend who was going to stay the first night if you didn't, but I think she can stay with her daughter--

if not do you happen to know of any inexpensive places for her to stay in Boston?

She is not attending the conference so she is not limited to this hotel.

I will get back to you--I hope it is okay to share contact info on this site?

Susan

Dx 5/18/2011, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2-
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Jul 2, 2018 08:46PM - edited Jul 28, 2018 05:09PM by Moderators

As things have turned out, I am still searching for a roommate for the ILC Breast Cancer Conference in Boston.

If anyone else is interested in attending, I have a reservation at the Boston Marriott Long Wharf at the special conference rate for Wednesday, Thursday and Friday nights.

The conference runs July 12th thru the 14th--Thursday, Friday and Saturday. Saturday will be focused on lobular breast cancer and the two preceding days are on all kinds of breast cancer research.

Please e-mail me if you are contemplating going and would like to share a room.

Dx 5/18/2011, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2-

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