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Topic: GRRRRRRRRR I HATE LE..........

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Oct 14, 2010 10:56PM

Estepp wrote:

EVERYONE can tell I have it... my arm just looks so fat..... I have been to.... and going back to.... therapy..... with a LE specialist... I wrap... I wear compression garments when flying.. exercising... BLAH BLAH BLAH......

I do it all, and I do it right. As a Stylist..... I was told... My job was a good profession to be in as it will help my lymphatic flow.... well....... MY FREAKIN' body... MY personal LE gets MUCH WORSE when I work........

I have to vent this....this is just such an angry spot... such a bad thing.....

If I change the way I dress..... if I do not work in my field...... if if if......................... my LE is ok.

REALLY????????????????????

I pray for a cure for this... I PRAY we all can get NODE replacement SOON... PLEASE allow science to figure out a way to REPLACE our nodes.. SOON.

I would rather have chemo all over again... than deal with LE.

Just a post.... to vent.... for ALL OF US. I do not need a pat on the back here sisters.. I need you ALL to get mad with me....... Post YOUR pain in this trip we call LE.......

We are the Ta Ta Sisterhood! Her2+ BC is what I had.... and yes sisters.. I had lymph node involvement...Plus Radiation AND Implant only Reconstruction. DX 6/25/08
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Jul 24, 2018 04:57PM - edited Jul 24, 2018 05:00PM by JO-5

Diane,

Hi....I gained on Arimidex and it is hard to lose.

I've been off Arimidex for 9 years and went up and down in weight several times, trying all kinds of diets....low carb, protein, etc. etc.

I am almost at my goal weight and I've done it mostly by cutting portions. I cut sugar except for fruit and angel food cake. Occasionally I will eat a graham cracker. I eat mostly vegetables chicken fish and turkey. I have beef but very lean and no more than the size of my four fingers put together. The only bread I eat is sourdough bread made by the local Amish because it is a natural probiotic. I drink about 5 sometimes 6 16 oz glasses of water a day. I drink no pop or sweetened drinks. I have one cup of coffee a day with fat free half and half. It is amazing what cutting out most bread and sweets has done. Nothing fried if it is fried it's in olive oil. It has worked for me.

Up until this arm situation I was up and moving as much as possible.

Since I'm having to sit with my arm up so much I have just cut my portions more.

Good luck...losing weight is so hard.

BTW.....nothing on the MRI yet.....but it's only been one day.....can we say impatient? ;)

I just wish I knew what to do about doing Lebeds and/or massage. If this is lymphedema and inflammation I really need to be busy on it. If it is cancer I should not. Dr will not say until he gets results from an MRI that may not happen.

I've about decided to just go ahead and do Lebeds.....massage AWAY FROM THE FOREARM not touching the red (pink now) place and just see what happens.

None of my careteam knows what to tell me except elevate and rest it.

It seems like they have all forgotten A FLY BIT ME ! I was fine before this. It IS BETTER.....not completely gone but BETTER!

ok I'll stop screaming.....Just want to know what to do.

If you can do Lebeds....do it. You don't want to end up like me. If I would have been more diligent with Lebeds and massage perhaps there would not have been as much LE to trap the fly spit.

Joanne




Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Jul 24, 2018 05:24PM ReadyAbout wrote:

I have not been diagnosed with LE, but I am currently trying to kick a bout of cellulitis in left foob and from what I gather on this board, having cellulitis increases the chances of getting LE later. Is that accurate? A friend who is a lymphedema specialist urged me to wear a compression sleeve when I lift weights, which is several times a week. Haven't decided if I should wear one when playing tennis or running. Any advice on this? Am I smart to wear a sleeve just in case or is it overkill? And does having cellulitis once make you susceptible to getting it again? I am a teacher and a trail runner, so I am surrounded by germs ALL.THE.TIME.

Dx 2/1/2018, IDC: Papillary, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+ Surgery 2/22/2018 Lumpectomy: Left Surgery 5/15/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant, Tissue expander placement Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 24, 2018 05:29PM - edited Jul 24, 2018 05:32PM by JO-5

I can only tell you that I never had LE until after my first bout of cellulitus.

This is my 6th time with cellulitis (or whatever this is) and EVERY time the LE got worse.

I was lax on wearing the sleeve and I can tell you now.....when this saga is over I will be wearing it for anything the least bit strenuous.

Once you've had cellulitis I think you are more prone to get it again......but others will be along that know more than I do.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Jul 24, 2018 05:31PM - edited Jul 24, 2018 05:31PM by JO-5

This Post was deleted by JO-5.
Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Jul 24, 2018 05:53PM Binney4 wrote:

Hello, ReadyAbout, and welcome!

There is research that supports the fact that cellulitis is one factor that increases your risk of LE. And on the other hand, cellulitis can itself be an indication of subclinical LE that already exists in the area (and increased your risk of cellulitis in the first place.) Goes in both directions, unfortunately. Once the infection clears, it'd be good sense to make an appointment with your LE-specialist-friend (or someone she recommends) for an evaluation and to learn a gentle self-massage (Manual Lymph Drainage) that can help you prevent any repeats. If she does suspect breast LE is involved, she can also help you find a suitable bra to provide compression.

Arm compression during exercise is one good help with reducing LE risk, but ONLY if the fit is good. Have your friend or a well-trained LE therapist check that out, then use the sleeve for exercise, heavy work (gardening, vacuuming, pitching hay bales, etc.) and travel. More risk-reduction tips here:

http://www.stepup-speakout.org/riskreduction_for_l...

And information about breast LE (also called truncal LE) here:

http://www.stepup-speakout.org/breast_chest_trunck...

Hope you never have to join our Swell sisterhood! Hugs,
Binney

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Jul 24, 2018 08:19PM Vargadoll wrote:

Swell sisterhood ♡♡♡♡

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 25, 2018 08:57AM Vargadoll wrote:

New bra...I love it! Walking out the door. I'll let you know if I feel the same way when I get home.

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 25, 2018 10:39AM JO-5 wrote:

Love the look of that.....is it tight? Anxious to know more about it when you have time. I need one that comes way up under the arm, but can't stand anything too tight.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Jul 25, 2018 10:43AM - edited Jul 25, 2018 10:46AM by JO-5

Binney, or anyone that has this.

Does arm LE ever go up into that side of the neck and/or in front of the shoulder.? Very slight....but seems different than other side.

My whole right side is bigger than the left, especially since the mastectomy and lat flap. so maybe that and not LE. Just never noticed my neck before. Can't hardly see it....just feel it slightly.

JOANNE

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Jul 25, 2018 12:40PM tsoebbin wrote:

The bra looks great. Is it pocketed?

Jo... Yes, my swelling can move like you are describing. I just use my hands to pump my nodes in my neck very gently. Seems to take care of it.

FYI... I'm sending you positive vibes everyday! I don't post much since I don't have a lot to add, but I look for your posts everyday. Your arm sure looks better to me and I'm hoping you get connected with the right doc soon!

I am 54 and Love Travel, My Family and Friends, and Life in General! Dx 4/4/2016, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 5/10/2016 Lumpectomy: Left Dx 5/11/2016, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2- Surgery 6/27/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right
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Jul 25, 2018 12:52PM - edited Jul 25, 2018 12:52PM by JO-5

Thank you tsoebbin,

I looked up that bra. It is a compression bra and I cannot wear that.....but it looks great for anyone with breast lymphedema.

I did the Lebeds and my neck actually went down.

Thank you for responding . It helps to know that someone else has the neck swelling. I probably have had it all along and I'm just more sensitive to everything right now.

Thanks too for the encouraging words.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Jul 25, 2018 02:05PM tsoebbin wrote:

I went to a new lymphedema physical therapist this week. I'm not having any big changes, or major issues, but my old therapist retired and I decided I should get in to see a new person so we were familiar with each other if I did have an issue. It was nice to see somebody with fresh perspective on my body.

Sometimes I feel like finding a medical professional is like dating. Part of its personality and connection, mixed with just the right amount of of experience fast and current knowledge So I guess I can say our first date went well, and we'll see each other again.

I am 54 and Love Travel, My Family and Friends, and Life in General! Dx 4/4/2016, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 5/10/2016 Lumpectomy: Left Dx 5/11/2016, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2- Surgery 6/27/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right
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Jul 25, 2018 02:57PM - edited Jul 25, 2018 02:59PM by JO-5

Ha Hope it is a long happy relationship.

I've been through 2 so called certified LE therapist. The first one wrapped me so tight that my fingers turned blue by the time I got home and my arm was killing me. The second time she wrapped me it all started falling off on the way home.

The last therapist started doing my arm without clearing and when I asked her about clearing she asked what I meant.....and then after I showed her what I had learned (from books and videos) she said I knew more than she did.

Dr's nurse says that last therapist is still there but they have had a lot of complaints about her and there is an alternative one I can see,

but not until after the MRI and they figure out what is going on.

So congratulations on finding a good one.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Jul 25, 2018 06:47PM HersheyKiss wrote:

Hello everyone! I am so thankful to have found this thread.

I've recently returned home from a series of long flights to care for my aging mother. This last trip, I was in the air for nearly 12 hours (flights were redirected to numerous other airports due to weather issues). I ended up with Stage 1 lymphedema. I've seen my surgeon and started working with an LE specialist. Unfortunately, she's left town for vacation for 10 days.

I was fitted for a compression sleeve, but it just seems to push fluid from one body part to another. The nighttime garment leaves marks in my arm. That can't be good, can it? I do not feel like I am reducing at all.

Joanne, I've been following your posts. Please know that I am thinking of you and praying for you a lot. You have been through so much.

Dx 3/1/2017, ILC, Left, 2cm, Grade 1, 3/16 nodes, ER+/PR+, HER2-
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Jul 25, 2018 07:51PM - edited Jul 25, 2018 07:51PM by Binney4

Hi, HersheyKiss (delicious screen name!),

It sounds like you've been through a wringer lately--I'm so sorry! If you've already seen a well-trained lymphedema therapist, you know that compression garments are only one part of caring for this new vexation. Have you learned the gentle "massage" technique (called Manual Lymph Drainage, or MLD) that helps clear the fluid from your arm? If so, finding a time each day to do that would be a help in keeping this under control. You also didn't say whether your therapist was wrapping your arm with layered bandages?

I'm not clear on what's happening with the compression sleeve pushing fluid to other areas. If it's pushing fluid to your hand or fingers DON'T WEAR IT AGAIN UNTIL YOU CAN BE SEEN BY YOUR THERAPIST. You don't want lymphedema in your hand if you can avoid it.

The night garments work differently than day garments to control swelling. If they're fitted well and working as you sleep, you will see marks on your arm when you wake up. They indicate the direction of flow that the sleeve is designed to create. What you DON'T want from a night garment is pain, so if it's rubbing at the wrist or elbow and causing you discomfort, redness or pain, that's something you need to take up with your therapist.

Believe it or not, this actually gets easier with time! Hang in there!
Binney

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Jul 25, 2018 11:18PM HersheyKiss wrote:

Hi Binney, and thank you so much for your response!

I was never bandaged (the surgeon and LE specialist both felt it was overkill). I have not learned MLD. Is this something the LE specialist would teach me?

The sleeve seems to push fluid to my wrist from the arm. The wrist feels full and "stuck" when this happens. The nighttime garment rubs the inside of my elbow, and yes, the skin becomes irritated.

Thanks again for your words of encouragement. They are greatly appreciated.


Dx 3/1/2017, ILC, Left, 2cm, Grade 1, 3/16 nodes, ER+/PR+, HER2-
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Jul 26, 2018 10:33AM Binney4 wrote:

Good morning, HerheyKiss,

Learning MLD is one of those "tools" you'll definitely want to have in your LE toolbox. With any chronic condition, knowing how to do self-care is the way you take your life back into your own hands. Yes, your therapist is the one to teach you. Wrapping is another skill (steep learning curve, but doable!) that's a huge help when there are flares or the need to prevent them, so talk to your therapist next time you see her/him about having the skills you need to manage this crummy condition.

Until you can see your therapist, best to avoid the sleeve that's pushing fluid into your wrist. Sounds like either the fit is wrong or you need a glove or gauntlet (fingerless glove) to avoid further LE spread. As for the elbow irritation, try dumping some cornstarch into the toe of a clean cotton sock, tie off the top with a rubber band, and use that to dab cornstarch onto the elbow area before putting on your night sleeve.

Gentle hugs,
Binney


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Jul 26, 2018 11:42AM JO-5 wrote:

MRI is scheduled Saturday August 11...at 10:30.

2 more weeks of waiting.

I'm doing just 1st 15 minutes of Lebeds every morning. Arm does not seem to be as swollen or as red when it is elevated.

Using it much causes it to be what I would call dark pink....certainly not angry red as at first.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Jul 26, 2018 12:21PM Binney4 wrote:

Joanne, that sounds like progress! Onward!

But, waiting? ROTS!!!

Hang in there, and keep us posted,
Binney

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Jul 26, 2018 01:52PM JO-5 wrote:

Thanks Binney!

I am not the best "waiter" but am learning.

Can't even have chocolate! Sad

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Jul 26, 2018 11:57PM MinusTwo wrote:

Oh no Jo - no chocolate? It's terrible that you have to wait another two weeks, but glad that the test is finally scheduled.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jul 27, 2018 08:10AM Vargadoll wrote:

Joanne - slow progress is still progress no matter how dang slow it is! Maybe a cancelation will come up and you will get a call to come in earlier?..if you can't have chocolate how about peanut butter! That's my favorite! I have a supervision this morning will check back in this evening.

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 27, 2018 11:48AM - edited Jul 27, 2018 12:01PM by JO-5

Yes it is slow, and I'm trying to take comfort in that it is NOT WORSE...and is improving some.

I've been wondering if ANYONE or anyone you've ever heard of has had red swollen issues from a bug bite in their LE arm that lasted over 2 months?

I've read several things about deer fly bites that take months to go away and tend to wax and wane...but nothing about in a lymphedema arm.

The actual bites have healed long ago but took about 2 weeks. This red swelling (I should say dark pink) is on the inside of my forearm...bites were on the back of my arm.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Jul 27, 2018 05:33PM MinusTwo wrote:

Jo - I had a bite of some kind on my leg some years ago before I had LE. Red, swollen, throbbing... I ended up in the hospital for a week on IV antibiotics. Probably not relevant, but it worked.

If some of your docs are thinking cancer, why haven't they ordered a PET/CT? This nuclear test will show up any hot spots of increased cellular activity in the body. I know lots of docs don't like to order them because patients can get frightened, and if I understand correctly, there is a higher percentage of false positive than some of the other tests. But that's how they confirmed my recurrent cancer.

Wish I had some better ideas for you.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jul 27, 2018 06:34PM JO-5 wrote:

My dr says the MRI August 11, will show him what he wants to know.....and he does not want to do a CT scan because of the radiation.....since my radiation treatment caused the secondary angio. I don't know if a pet scan uses radiation or not, but I think it does. It is not the same kind of radiation but is accumulative.

Thanks for the reply.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Jul 28, 2018 01:01PM JO-5 wrote:

So much for doing Lebeds. I did them gently because of this lat flap and constant pain from all the scars.

I even skipped a day so as not to cause that area to hurt.

I had to stop. The burning stabbing pain in my arm pit, the flap on my chest, scar on my back hurts so badly I can hardly breathe. The pain in my upper arm is bad.

I'm back to just elevating and waiting.

Sorry to whine...I am well aware of how this sounds....but every word is true.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Jul 28, 2018 01:10PM MinusTwo wrote:

Jo - whine away. Of anyone you know WE understand the pain & the frustration.

For those of you who want to attempt more exercise, Hugz has issued a 5/2 challenge on the LE exercise thread. Check it out.

https://community.breastcancer.org/forum/64/topics...


2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jul 28, 2018 02:02PM Binney4 wrote:

Oh, Joanne, good on you for knowing to stop and back off.

And for what it's worth, it doesn't sound like whining to me--or likely to anybody else here either. This is a safe place for sounding off about the frustrations and the challenges. Just know we're all rooting for you. Wish we all lived close enough for hugs!
Binney

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Jul 29, 2018 09:14AM ohio4me wrote:

if you are near Canton, I have two therapists I go to when needed. One is more for myofascial stuff related more to radiation. The other was trained, cuz her mother had LE, but never tested. She was very helpful and gives reduced rates if you schedule multiple appointments. I learned technique from her. My first therapist was in Barberton and was excellent, she moved to California.

PM me if you are local and I will give you names and numbers.

Dx 3/29/2011, ILC, 5cm, Stage IIIC, Grade 2, 14/15 nodes, ER+/PR+, HER2- Surgery 7/11/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 8/29/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/23/2012 Surgery 7/23/2012 Prophylactic mastectomy: Left
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Jul 29, 2018 02:12PM tsoebbin wrote:

Jo... Please keep sharing here. It's the perfect place to share frustration, fear, and worry... It's also a great place to share good news and I hope you have some great news to share soon! 🌻


I am 54 and Love Travel, My Family and Friends, and Life in General! Dx 4/4/2016, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 5/10/2016 Lumpectomy: Left Dx 5/11/2016, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2- Surgery 6/27/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right

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