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Topic: Letrozole

Forum: Hormonal Therapy - Before, During and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Feb 9, 2017 03:40PM

Artista928 wrote:

Well, today my labs showed I'm officially in menopause and onc wants to switch me off Tamox and on this. Scared because of joint issues so many get. Already have it. Anyone here on this and care to share experience? I have 2 weeks of Tamox left in my bottle so I'm going to finish it before taking the plunge. Ugh.

Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/1/2017 Reconstruction (right): Fat grafting, Silicone implant
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Feb 9, 2017 04:57PM Kicks wrote:

I've been on Femara/letrozole for 7 yr. When I started Femara, it was not available in the generic form - letrozole - so it was Femara until it became available in generic form - letrozole - and have been on it since it became available. Since then, it's been letrozole (different brands at different times).

I was 63 when DXd and started Femara. I had gone through natural menopause at 44, so was 19 yrs post menopause when I started Femara. Except for a few weeks when my PA wanted me to try HRT because of a huge family HX of osteoporosis, I didn't 'do' it. I didn't like HRT SEs, so quickly stopped it.

Do I have 'aches and pains' - 'ya betcha I do'. They have gotten worse over the yrs on Femara/letrozole BUT were there before (thanks to being a very active horsewoman all my life and active in a lot of different outdoor activities) and would have progressed anyway. So now at 70 - the more active I keep myself, the less 'aches and pains' I feel. Of course, 'they' would have progressed over the yrs anyway, even without Femara/letrozole.

A lot comment on 'hot flashes' on Femara/letrozole. I didn't/haven't had any - but then I never had any when I went through menopause.

Others will have different experiences to pass on to you. My experiences are mine - others are theirs. We are each so unique that there is no way to 'predict' what any of us will individually experience because someone else did. Get all the input/insight you can get, but always remember that you are the unique woman you are - just as each of us are.

Winyan - The Power Within

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/25/2009 AC Surgery 10/21/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
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Feb 9, 2017 05:29PM KB870 wrote:

Good to know. I also had a natural menopause at 45 and didn't realise because I had no symptoms! Periods just stopped. No HRT or anything. Really hoping I get no SEs when I go on letrozole around March/April. Just diagnosed t 62.

Surgery 9/19/2016 Lumpectomy: Left Dx 10/6/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC) Surgery 10/31/2016 Lymph node removal: Sentinel Targeted Therapy 11/28/2016 Herceptin (trastuzumab) Chemotherapy 11/29/2016 Taxol (paclitaxel) Radiation Therapy 4/3/2017 Multi-catheter: Breast
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Feb 9, 2017 05:56PM mustlovepoodles wrote:

I started letrozole last year at age 59. I have noticed stiffness and pain in my hands and knees. However, I have had psoriatic arthritis in my hands and feet, and osteoarthritis in my knees for many years ,so it's hard to say how much of the stiffness and pain is the original arthritic pain and how much is the letrozole. I have had no hot flashes and I have no more trouble sleeping than usual (I have chronic insomnia, so I take medication to make me sleep.)

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/19/2015 Lumpectomy Surgery 9/2/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/3/2016 Prophylactic mastectomy: Left, Right Surgery 10/18/2016 Hormonal Therapy Femara (letrozole) Surgery
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Feb 10, 2017 04:17PM CidneyI wrote:

I stopped taking Letrozole this past Christmas because of the side effects. My feet, hands and knees hurt so bad to the point if being miserable. Hot flashes - you betcha. What really made me stopped taking Letrozole was how it made me feel mentally. I have never experienced depression but I now know what it feels like to be depressed. I wasn't sad, I didn't have self pity, I just no longer cared about anything anymore. I had no feelings about anything, I no longer wanted to do the things I loved or be around loved ones or people. I didn't care if I lived or died. I was content with just sitting someplace and starring off at nothing. I have been off of that damn pill for about a month and a half now and I am just now starting to feel slightly better. I go see my onco at the end of this month and I know he is not going to be happy with me but I can not live my life like that. I would rather tolerate the physical issues any day over how it makes me feel mentally.

Dx 9/11/2014, DCIS, 2cm, Stage IIA, 0/5 nodes, PR- Surgery 9/11/2014 Lumpectomy: Right Surgery 9/18/2014 Lymph node removal: Right, Sentinel Radiation Therapy 9/24/2014 3DCRT: Breast Hormonal Therapy 10/23/2014
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Feb 10, 2017 06:49PM - edited Feb 10, 2017 06:52PM by ChiSandy

My experience with Letrozole thus far (13 months) has been the same as Kicks' (except for the horsewoman part—I am a congenital klutz and dedicated non-athlete). I have “startup" joint aches (immediately after getting out of bed or up after a long session of sitting, I hobble…but 20-30 steps later I'm fine), and that's about it. In fact, I hurt much worse from knee OA, years pre-cancer, before I had my knees replaced. I got a trigger thumb (R) that eventually disappeared, but had a L one a decade ago (again, long before cancer). The closest I get to a hot flash is either sleeping with the ceiling fan on (low speed) or suddenly feeling comfortable in a very cold room. Never had them during menopause (11 yrs ago). I do have a slower metabolism and have gained about 10 lbs. since starting Letrozole…or maybe it's the carb cravings I'm finding harder to resist (the “YOLO" mantra has been playing on an endless loop in my brain). And my hair was thin-ish before cancer too. My cholesterol (mostly LDL) has increased, but my total cholesterol-to-HDL is still in the “ok” range. And both my parents had sky-high cholesterol (like me, my mom’s HDL was in freak-of-nature territory and she might still be with us instead of dying at 85 had she not smoked) until they took statins.

Maybe what's helping with my joints is that I take both my letrozole and a couple of 8-hr acetaminophen at bedtime and a Celebrex in the morning. And my Fitbit keeps guilt-tripping me into walking more.

I'd say that being very strongly PR+ might explain the mildness of my symptoms, but Kicks was PR-. Go figure. Everyone is unique.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/22/2015 Lumpectomy: Right Radiation Therapy 11/1/2015 3DCRT: Breast Hormonal Therapy 12/30/2015 Femara (letrozole)
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Feb 10, 2017 07:37PM Artista928 wrote:

Thanks--

Chi- What was your PR? Mine is 50.

Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/1/2017 Reconstruction (right): Fat grafting, Silicone implant
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Feb 10, 2017 08:08PM ChiSandy wrote:

My PR was 97%. ER was 75% (the reverse of most ER/PR+ patients).

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/22/2015 Lumpectomy: Right Radiation Therapy 11/1/2015 3DCRT: Breast Hormonal Therapy 12/30/2015 Femara (letrozole)
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Feb 10, 2017 08:17PM Artista928 wrote:

My ER was 95. Ki67 was 75.

Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/1/2017 Reconstruction (right): Fat grafting, Silicone implant
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Feb 10, 2017 08:43PM ChiSandy wrote:

My path report & ODX results didn’t mention my Ki67. My MO says it’s not as predictive as ER & PR %ages, grade, node status and ODX score—especially in Stage IA patients.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/22/2015 Lumpectomy: Right Radiation Therapy 11/1/2015 3DCRT: Breast Hormonal Therapy 12/30/2015 Femara (letrozole)
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Feb 10, 2017 10:13PM Artista928 wrote:

They didn't do an oncotype on me. I was basically told if you don't do chemo, very large chance I'd be stage IV at some point. That was enough to scare me as I was hoping to avoid that and just do rads after my mxs.

Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/1/2017 Reconstruction (right): Fat grafting, Silicone implant
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Feb 11, 2017 07:49AM KBeee wrote:

They only do oncotype if they are on the fence about chemo. They do not do it for stage III because they know the benefits outweigh the risks. I had tamoxifen and now am on Letrozole. I think for me, the Letrozole is easier. I do get frustrated having to take it since 10 years will be the minimum for me, but I know that my triple negative friends would do anything to have a pill to take that would decrease their recurrence risk, so I try hard to be grateful for it.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Mar 20, 2017 06:26PM Wendy3 wrote:

Hello Ladies,

I'm new to the letrozole it's been about a month now. I'm finding it very difficult hot flashes, night sweats , nausea, I think I have all the SE and I'm very tired. So my question for you ladies is does this normalize or is this drug not for me? I am 53 and two years gone from menopause. Thanks

Dx 5/13/2015, IDC, Right, 2cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy Faslodex (fulvestrant), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 20, 2017 06:42PM wintersocks wrote:

I am due to stop Letrozole in a few weeks as my 5 years on it will be up. I have had my share of hot flushes which I believe have been controlled by Venlafaxine (Effexor in US ). I continue to have night sweats and manage them as best I can cotton nightwear etc, I did not have nausea that was caused by this drug I believe but nausea for other reasons.

After 5 years I would say my biggest problem on this drug is hair thinning which I hope might be reversed once I am on Tamoxifen.

I would leave it to settle then review in a month or so - my advice.

Dx 2/20/2012, IDC, 6cm+, Stage IIIA, Grade 2, 4/11 nodes, ER+/PR-, HER2- Chemotherapy 3/22/2012 Doxil (doxorubicin), Taxotere (docetaxel) Surgery 8/28/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Hormonal Therapy 9/9/2012 Femara (letrozole) Radiation Therapy 9/15/2012 Breast, Lymph nodes
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Mar 20, 2017 06:55PM Luckynumber47 wrote:

Wendy, do you know which lab mfgs your letrozole? Some people have side effects from different fillers and those vary from lab to lab. Mine come from Teva and so far, (knock on wood) the side effects have been minor.

Also, many have said that after a few month the side effects go away. Hopefully that'll happen for you

My avatar is a Blue Footed Boobie. Cracked me up. ATM variant, mom died at 33 from BC Dx 2/15/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 3/16/2016, DCIS, Right, <1cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR- Surgery 4/6/2016 Mastectomy: Left, Right Hormonal Therapy 5/16/2016 Femara (letrozole)
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Mar 20, 2017 10:07PM groucho2 wrote:

I am on Letrozole for the second time, because this is my second time around with BC.

I had no noticeable side effects ether time. My first time around, I took Femara. There was no generic available. This time around, I am taking the generic. Like I said, I don't notice any side effects.

Now, Tomoxifen, speaking just for myself, was a nightmare......


Dx 12/6/1999, IDC, Left, 3cm, Stage IIB, Grade 3, 0/8 nodes, ER+/PR+, HER2- Surgery 12/6/1999 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 1/15/2000 CMF Dx 4/29/2016, IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 6/17/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Mar 21, 2017 01:40AM - edited Mar 21, 2017 01:47AM by trudy-erl

Hi Ladies:

I had Inflammatory Breast cancer and after chemo, mastectomy and radiation was put on Letrozole. I've had horrific side effects like, zero energy, insomnia, joint pain, depression, cataracts, night flashes and on and on. The worst one being the lack of energy, and generally not feeling well. I was 59 when started taking it and was told if I was very fortunate I would be cancer free for 2 years and possibly could be looking at 5 years. 5 Years came and went, I was ecstatic eventhough I was feeling rotten. In October it will be 10 years. BTW, I have extremely thin hair but know that many never get any hair back who received the chemo I did. I also had/have to take Atorvastatin as my cholesterol went very high. I went from 10 mg. to 40 mg. daily. As I had a history of blood clots I had to start Warfarin before my chemo and am still on it. My dilema is what to do? My oncologist suggested (after 5 years) to stay on it as I surely would have not been in remission that length of time without the Letrozole, my GP who is the best fully agreed and I did as well....... to stay on the Letrozole. It seems like every year I'm losing more energy and now seem to go out only when I need to. It is very difficult, but much better than getting terminal cancer. I would truly appreciate any comments and/or opinions from you Ladies. I can hardly remember how energetic and happy I was before diagnosed with IBC, and know it is the past and needs to stay there. Thank you for any thoughts you have on this. :( I do not have all the history as you Ladies do, as Canada has a very different Health Care System. I'm stage 3/ which is one ahead of terminal. If it re-occurs it definitely would be terminal. Generally speaking, IBC does not back in the other breast but rather in an organ, mostly the brain.

I know I had 3 lymph nodes involved and I got Chemo first before the mastectomy (instead the usual reversal) and this was followed by 26 radiation treatments.

With great appreciation, THANK YOU!

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Mar 21, 2017 08:21PM gardengypsy wrote:

Groucho~ You give me hope. I have been afraid to start the Letrozole..
Dx 10/29/2015, ILC/IDC, Left, 5cm, Stage IIIA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 12/3/2015 Lymph node removal: Sentinel; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 1/9/2016 AC + T (Taxol) Surgery 5/23/2016 Hormonal Therapy 5/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 6/5/2016 Whole-breast: Breast, Lymph nodes, Chest wall
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Mar 23, 2017 04:15PM Wendy3 wrote:

so

So today started having major abdominal pain this can't be part of the SE can it? I'm terribly worried that it's not working and instead it's progression

Dx 5/13/2015, IDC, Right, 2cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy Faslodex (fulvestrant), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 23, 2017 08:07PM Artista928 wrote:

After 5 wks on letro, I pulled the plug on it. Saw my onc today and with all the nasty se's I'm having from head to toe, it's not worth my being so sidelined from it. My arthritic knees pre-cancer got worse and other jts I never thought about chimed in too. Giving my body the weekend off and I'm back on Tamox where the se's were more handable than this. It was a hard decision even though I've relieved to not be as miserable going back on Tamox but mine got down to not just quality of life, but almost life itself and not just in the form of depression..

Wendy- try not to worry. See your pcp or onc and get your liver values tested. My pcp handles non-hormonal lab work and CBC,CMP. The rest is on my pcp. My liver values are still high and I do have off and on abdominal cramps so I'm getting an abdominal ultrasound done. She wants to be sure it's just fatty liver for me as I have that and not anything else. You have to talk to your docs about symptoms and if they don't offer tests, ask for it. My pcp is so pro everything that if she can't explain why something is off with me, I get tested. Good luck.

Good luck to all who keep to the AIs whatever one you take. I've never had much se's before ever in my life, not even with chemo- it wasn't terrible for me. This however was like an avalanche.


Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/1/2017 Reconstruction (right): Fat grafting, Silicone implant
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Apr 17, 2017 06:48PM Joanne_53 wrote:

Hi everyone ... I will be new to the group June 4 when I start Letrozol. I have 5 years on Tamoxifen and will take the month of May off as a drug free vacation. Looking forward tosupport if needed. I have read your posts and I can only home it is a cakewalk like a few of you and not the opposite. Thanks to everyone for being here ...

Joanne - Onco DX score 12 Dx 12/8/2011, IDC, 3cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 1/11/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Hormonal Therapy 4/9/2012 Radiation Therapy 4/10/2012

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