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Topic: Low Oncotype, node-positive and chemo decision

Forum: Stage II Breast Cancer — Meet, share and support others with Stage II Breast Cancer

Posted on: Oct 27, 2017 02:17PM

Ckat wrote:

Hi all, I've been lurking since my diagnosis in August but this is my first post because I'm really struggling to make a treatment decision in the next few days. In brief: I am 47 years old and premenopausal. I had a 1.2cm stage IIA tumor, highly ER/PR positive, HER2-negative, low ki-67(1-5%), grade 1. It was removed via lumpectomy September 18 with clear margins. Although the nodes were clinically negative, the pathology report was positive in 2 of 3 lymph nodes (macromets of 2.1mm and 3.2mm).

However, because my Oncotype score was 15, I've had different recommendations from two oncologists. The first one wants me to have 4 rounds of Taxotere/Cytoxan. The second--head of breast oncology at a major research hospital--said he wouldn't even know what to advise his own wife in my situation because the data isn't back from current studies. He left the decision to me, but said he prefers Taxol/Cytoxan and would give it on the same schedule (4 rounds, 3 weeks apart). I'm completely overwhelmed, single and don't have a lot of family support, so I'm basically alone in making every decision. What makes the decision even more difficult is that I posted a question on the Johns Hopkins board and they basically said that although they couldn't provide a consultation, chemo isn't generally recommended with Oncotype 15 scores.

My biggest fears at this point are permanent hair loss and debilitating neuropathy, since I make my living as a writer. I'm definitely leaning toward chemo but am wondering if others out there in my situation routinely skip it. Also, I'm wondering if the Taxol/Cytoxan regimen might be a little easier. I know it's not as commonly prescribed. Adding another complicated twist to the mix is the fact that the research hospital that uses the Taxol-based regimen does not offer freezers or cold caps, while the Taxotere-based one does provide both Dignicaps and freezer access. It's also geographically closer. Anyway, sorry this is so long-winded! ANY advice, insight or general opinions would be greatly welcomed. Have a nice weekend everyone.

Dx 8/12/2017, IDC, Left, 1cm, Stage IIA, Grade 1, 2/3 nodes, ER+/PR+, HER2- Surgery 9/9/2017 Lumpectomy: Left Chemotherapy Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Oct 27, 2017 02:39PM Cpeachymom wrote:

Hi Ckat, sorry you're here. I had a very similar situation where my initial pathology was node negative but final was positive with macromets. Both my surgeon and MO advised me to seek a second opinion in Boston because they were also on the fence and as you've discovered, apparently there's no "clear cut" answers in this case. Dana Farber arranged for the oncotype testing because It wasn't done initially because of the positive node. My oncotype was 14. They recommended no chemo, my MO wasn't fully comfortable with that because of my age. I declined chemo, finishing up radiation now, taking Tamoxifen with ovarian suppression, and that's what I felt was best for me. According to my surgeon, I could ask 6 different doctors and would get 6 different answers! I wish you the best, there's no easy answers here

39 at Dx. Fate whispers to the warrior, 'You can not withstand the storm.' The warrior whispers back, 'I am the storm.' Dx 6/21/2017, IDC, Right, 4cm, Stage IIB, Grade 1, 1/3 nodes, ER+/PR+, HER2- Surgery 7/4/2017 Lymph node removal: Sentinel; Mastectomy: Right Hormonal Therapy 9/10/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 9/17/2017 Lymph nodes, Chest wall Surgery 10/9/2018 Reconstruction (right): Tissue expander placement Surgery 3/24/2019 Reconstruction (right): Saline implant Hormonal Therapy Zoladex (goserelin)
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Oct 27, 2017 03:00PM Ckat wrote:

Thank you for sharing your experience, Cpeachymom. The confusion is pretty overwhelming.

Dx 8/12/2017, IDC, Left, 1cm, Stage IIA, Grade 1, 2/3 nodes, ER+/PR+, HER2- Surgery 9/9/2017 Lumpectomy: Left Chemotherapy Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Oct 27, 2017 05:12PM Cpeachymom wrote:

Part of my decision was that I was also strongly ER/PR +. Over 90% for both, and the delayed Oncotype testing that got further delayed due to insurance pushed any post surgical treatment out. I was getting anxious that we weren't doing Anything for two months, giving whatever cells were left a chance to grow! So I told my MO that I did not want to delay the rads or Tamoxifen any further when those were going to give me the most benefit in order to have treatment that would offer little benefit. That seemed reasonable to her I guess, because she didn't push after that

39 at Dx. Fate whispers to the warrior, 'You can not withstand the storm.' The warrior whispers back, 'I am the storm.' Dx 6/21/2017, IDC, Right, 4cm, Stage IIB, Grade 1, 1/3 nodes, ER+/PR+, HER2- Surgery 7/4/2017 Lymph node removal: Sentinel; Mastectomy: Right Hormonal Therapy 9/10/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 9/17/2017 Lymph nodes, Chest wall Surgery 10/9/2018 Reconstruction (right): Tissue expander placement Surgery 3/24/2019 Reconstruction (right): Saline implant Hormonal Therapy Zoladex (goserelin)
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Oct 27, 2017 06:36PM LeesaD wrote:

It's such a difficult decision. I'll share my situation. During surgery 1 of 4 sentinal nodes showed just micromets so less than 2 mm of cancer. Final pathology showed 2 of 4 with micromets. My oncologist ordered Oncotype score. While waiting for those results I was anxious about not knowing status of my axillary nodes even though both my breast surgeon and MO said with just micromets, odds are slim they'd find anything further. I was not comfortable not knowing the status of my axillary nodes so I pushed for ALND and my surgeon said he did not have an issue going back in. They took out 14 additional nodes and 2 were fully positive even moreso than sentinal nodes. My MO in a panic really set me up immediately for AC/T chemo and said regardless of Oncotype I'm getting chemo as now there are 4 involved nodes even though 2 were just micromets. So right after port placement my Oncotype comes back a 3. As it was ordered prior to my ALND the report was for 1-3 nodes and Oncotype is relevant currently for 1-3 nodes. So being so low my MO was encouraged by this score and based on this changed my chemo regime to TC and took away the A drug as his thinking the long term heart risk from the A drug now outweighed any benefit. So I had the Taxotere/ Cytoxan for four rounds. It was once every three weeks. I am 98 per cent ER + and 90 per cent PR+. My MO said with the 4 nodes he had to give it to me but he does say he feels he might have overtreated me with the chemo. He said in maybe a few years the studies will show that 4 involved nodes can skip chemo. The TC is doable. I felt crappy for 3-4 days after each treatment last treatment being the worst where effects lasted about 10 days. But between treatments I started running again and biking and could go out. My blood counts were all good and I didn't have any restrictions. I had no neuropathy and my hair is growing back. I knew the status of my axillary nodes as positive. If I did not go back in for the second surgery, I would have known just the 2 of 4 nodes with micromets, no radiation recommended as I had BMX, and no chemo at all with an Oncotype of 3 and would've been sent on my way with anti hormonals and those two positive nodes still there. The thought of that makes me ill. For me I was ok doing the chemo. Others have said to me even with the four nodes they might not have done the chemo with that low of a score. You have to be comfortable with whatever decision you make. I am comfortable with all I've done.
Oncotype Score 3, 2/4 Sentinal Nodes micromestasis so pushed for ALND for 'peace of Mind' and surprise found 2/14 positive axillary nodes Dx 2/3/2017, IDC, Right, 3cm, Stage IIB, Grade 2, 4/18 nodes, ER+/PR+, HER2- Surgery 3/26/2017 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 4/17/2017 Lymph node removal: Underarm/Axillary Chemotherapy 5/8/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/1/2017 Hormonal Therapy 9/7/2017 Arimidex (anastrozole), Zoladex (goserelin) Surgery 11/16/2017 Prophylactic ovary removal Surgery 1/29/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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Oct 27, 2017 07:21PM labelle wrote:

I had one positive node (surprise!) found at the time of my surgery and SLN biopsy-2 mm with extranodal extension, 7 mm breast tumor.

With an oncotype score of 11 both the OC at Vanderbilt and the BS/tumor board at UT said no chemo for me. Neither thought chemo would be helpful for me. As it was explained to me, the oncotype showed my BC would not likely respond to chemo and the fact that I had a deposit in a lymph node did not change that fact. Chemo brings with it some very real and lasting health risks. If it's not going to do any good, there's no point doing it. I think anything up to 18 is considered a low oncotype score. You might want to ask your OC about what the statistical chances are that chemo will actually be helpful in your situation, if and why they think it will respond to chemo despite a pretty low oncotype score. Because I had a lumpectomy, I did have radiation treatment.

Dx 9/29/2014, IDC: Tubular, Left, <1cm, Stage IIA, Grade 1, 1/11 nodes, ER+/PR+, HER2- (FISH) Surgery 11/12/2014 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy Whole-breast: Breast
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Oct 27, 2017 10:56PM Jackster51 wrote:

Ckat, that is a tough situation to be in! I was 47 at dx, although different pathology and was node negative. I had Taxotere and did not get my hair back, and that was 5 years ago :-( Not one eye brow or eye lash either and crippling neurapathy in my feet - but not hands. I am not a fan of Taxotere, but it was also before the label changed and I had never heard of anyone not getting their hair back, until it was too late for me.. There is a thread on here for cold capping. You might want to jump on their and read around.. Many women also ice their hands and feet. If I had to do it again, I would have either not done chemo at all, or asked for Taxol. Best of luck to you during this difficult time.

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Oct 27, 2017 11:37PM Rockym wrote:

It's been six years for me from dx. I don't know why I looked at your post, but I did. I will say that my stats were similar. I had micromets and back then they were saying that really didn't mean positive. My Onco was 20 (I think) and I was about your age. The difference was I had little kids and thought I needed to give it my all. I am SO glad I did. I couldn't take Tamoxifen as it made me crazy. In the end, I was happy I did the chemo and rads and thought I really did cover my bases.

As for the hair loss... that was a big thing too. Many ladies I know tried to save their hair or did cold caps and the reality was the cold caps were stressful and their hair thinned and some just didn't get what they bargained for. Me, I shaved it (really had my daughter do it) when the hair started to fall out. Yes, it sucked, but when it grew back in, it was sort of curly as first and I used a very small flat iron. Then it grew shoulder length (very, very layered) and eventually it was long and thick again. I think the eyebrows and lashes were most frustrating, but they came back too. Remember, it is all temporary. The body has a way of getting itself back together. Good luck.

Just when I'm about to make ends meet, someone moves the ends. Dx 6/13/2011, IDC, 1cm, Stage IIA, Grade 1, 2/6 nodes, ER+/PR+, HER2-
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Oct 28, 2017 01:37AM Meow13 wrote:

It may be temporary, but there is a percent that have permanent hair loss and side effects.

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Oct 28, 2017 11:53AM Jackster51 wrote:

Yes, Thank you Meow - I am one of them. It is 6-10% risk of permanent hair loss. It is not always 'just temporary"

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Oct 28, 2017 12:33PM Rockym wrote:

There also may be permanent side effects for ANY treatment (chemo, rad, meds, surgery, rehab, etc.). Since your profiles don't show what you went though, don't scare this first time poster. MOST of the ladies I know over the past 6 years went through treatment just fine and are alive today. If you want to be concerned about each and every possible side effect, pick something better than vanity. I would never want my hair to not grow back, but it sure beats mets and death. Glad my kids still have a mom.

Just when I'm about to make ends meet, someone moves the ends. Dx 6/13/2011, IDC, 1cm, Stage IIA, Grade 1, 2/6 nodes, ER+/PR+, HER2-
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Oct 28, 2017 03:26PM Ckat wrote:

Thank you everyone for responding. I'm going to go through with chemo. Just trying to decide between a regimen with Taxotere and one with Taxol at the moment.

Dx 8/12/2017, IDC, Left, 1cm, Stage IIA, Grade 1, 2/3 nodes, ER+/PR+, HER2- Surgery 9/9/2017 Lumpectomy: Left Chemotherapy Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Oct 28, 2017 03:59PM OCDAmy wrote:

I just finished four rounds of TC (taxotere). I had very few bad side effects and still have some hair. I iced my fingers and toes during this drug and have no neuropathy or nail issues. It's totally doable!

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Surgery 11/14/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Surgery Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole) Surgery Reconstruction (left): DIEP flap Radiation Therapy Whole-breast
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Oct 28, 2017 10:32PM Jackster51 wrote:

Rocky, with all due respect, I'm not trying to scare anyone. However, I was treated in 2011 with Taxotere (I'll fix my treatment section) and at 47 years old, with no kids, it was beyond shocking when I did not get my hair back. I live in So Cal where it has been over 100 degrees all summer. Try wearing head covering in that for the rest of your life. I'm certainly glad your children have their mother, but if I had I known about this potential side effect, I would have asked for Taxol, as I stated above, I wish so so so bad that someone would have warned me of this possibility, therefore, I am warning the OP. It's called Informed Consent and it is the Law. I'm sorry you have a problem with that.

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Oct 28, 2017 10:54PM - edited Oct 28, 2017 11:43PM by Sara536

Anyone trying to decide how to proceed with treatment finds themselves in the stressful position of weighing the pros and cons of each drug and treatment available to them. Everyone's priorities are different. I know my priorities are different at the age of 72 than they would have been when my children were young. I think it is appropriate for people to document both negative and positive experiences.To withhold information so as not to scare someone, although well-meaning, is not fair. Only when we are aware of all possibilities can we decide if we are willing to take certain risks. Even then, as has been said by many, it will still be a crapshoot. We make the best decision we can and keep our fingers crossed. There is nothing worse than being lied to.

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Oct 28, 2017 11:29PM Jackster51 wrote:

Thank you Sara536!! Amen to that!

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Oct 29, 2017 12:09AM Rockym wrote:

Jackster, your post, piggybacking with Meow, looked like a scare situation to me. I recall years ago women jumping in and trying to get ladies to change their minds about chemo and making those poor ladies decisions worse at the time. Most of the doctors mention the hair loss, although not all will bring up that some side effects can be permanent. I do get that, but that was where I was coming from. I'm sorry your hair loss was permanent and that does truly suck. I have 100+ weather for 6 months out of the year and although my wig was breathable, I would not want that forever. Like I said, I don't have a problem with letting ladies know, but it looked like a gang up with one post after another. If you were offended by my post I am sorry.

I am glad for you Ckat, that you have made an informed decision. I wish you the best with treatment and an easy recovery.

Just when I'm about to make ends meet, someone moves the ends. Dx 6/13/2011, IDC, 1cm, Stage IIA, Grade 1, 2/6 nodes, ER+/PR+, HER2-
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Oct 29, 2017 12:16AM Meow13 wrote:

I have heard many women complain that doctors did not warn them of the risk of permanent hair loss there is a lawsuit although I don't think it is a class action. People should be informed and make their own decisions.

Not trying to change anyone's mind. There are questions to ask your oncologist.

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Oct 29, 2017 07:23AM - edited Oct 29, 2017 10:57AM by Moderators

This Post was deleted by Moderators.
Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 29, 2017 07:24AM dtad wrote:

Hi everyone...why can't we have honest discussions about side effects of BC treatments? To call someone vain about losing their hair is mean spirited. We are here to support each other, not to name call. These are very difficult decisions and we all need all the information we can to help us decide what is best for us. Good luck to all navigating this complicated disease.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 29, 2017 08:16AM pupmom wrote:

I guess I'm vain, cause the idea of losing my hair is very upsetting. I haven't had chemo, but if I had, or do someday, hair loss would be a concerning s.e. And it's not just women. Men are just as worried about this. Look at the multi-billion dollar industry for male hair restoration.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Oct 29, 2017 02:48PM - edited Oct 29, 2017 06:19PM by Sara536

I would think that MO's would be really, really careful about letting patients know about potential side effects. Maybe they're uncomfortable with having that conversation because they can't reconcile it with their image of themselves as benign healers. I think a number of us have had the experience of their MO feigning surprise when we report that we experienced a debilitating SE. Then it almost feels like a "blame the victim" situation or an accusation of exageration on the patient's part. Thank God for these threads, but be careful not to mention that you got information from the dreaded internet.

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Oct 29, 2017 02:51PM Peregrinelady wrote:

Yes, you can see it on their faces when you say, "I read online," that they totally dismiss you, even though practically everything I know about this disease, I learned here!

Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/18/2015 Mastectomy: Left Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/19/2016 Mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 8/1/2016 Arimidex (anastrozole) Hormonal Therapy 7/20/2020 Femara (letrozole)
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Oct 29, 2017 03:11PM - edited Oct 30, 2017 02:04AM by Sara536

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Oct 29, 2017 06:03PM - edited Oct 29, 2017 06:08PM by Bliss58

This Post was deleted by Bliss58.
Dx at 56 06/2015, IDC left, 4cm, de novo mets to bone; dx 04/2020 progression to liver. Dx 6/1/2015, IDC, Left, 4cm, Stage IIIA, Grade 2, ER+/PR+, HER2+ (FISH) Dx 6/30/2015, Stage IV, metastasized to bone Radiation Therapy 12/16/2015 External: Bone Surgery 2/17/2016 Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy 5/8/2016 External: Lymph nodes, Chest wall Hormonal Therapy 2/1/2018 Aromasin (exemestane) Dx 4/2020, IDC, Stage IV, metastasized to liver, Grade 3, ER+/PR+, HER2+ (IHC)
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Oct 29, 2017 06:07PM - edited Oct 29, 2017 06:08PM by Bliss58

This Post was deleted by Bliss58.
Dx at 56 06/2015, IDC left, 4cm, de novo mets to bone; dx 04/2020 progression to liver. Dx 6/1/2015, IDC, Left, 4cm, Stage IIIA, Grade 2, ER+/PR+, HER2+ (FISH) Dx 6/30/2015, Stage IV, metastasized to bone Radiation Therapy 12/16/2015 External: Bone Surgery 2/17/2016 Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy 5/8/2016 External: Lymph nodes, Chest wall Hormonal Therapy 2/1/2018 Aromasin (exemestane) Dx 4/2020, IDC, Stage IV, metastasized to liver, Grade 3, ER+/PR+, HER2+ (IHC)
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Oct 30, 2017 02:15AM Meow13 wrote:

oh Sara, I know my MO said I would probably have no side effects from AI drugs. I was crippled in pain when I finally called my doctor he said stop the anastrozole today. The side effects were cumulative, my mo said why didn't you tell me sooner your pain was bad. Well, I didn't think I should complain about my pain. He immediately switched me to exemestane then it had different se's. I feel almost good now I am off drugs.

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Oct 30, 2017 11:39AM Sabina1974 wrote:

Hi Ckat

I had 6 rounds of TC and I have say I found it ok. I had chemo 25 years ago for a different cancer which included the famous A drug and was very ill on it. My onco nurse said to me if you were fine when you were pregnant with not much nausea you will find TC regime fine and I did. I wish you all the best.


Sabina


Dx 7/7/2016, DCIS/IDC, Left, 1cm, Stage IIA, Grade 2, 2/21 nodes, ER+/PR+, HER2- (FISH) Surgery 8/1/2016 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left Chemotherapy 11/4/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Liquid tamoxifen (Soltamox)
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Nov 4, 2017 08:21PM swg wrote:

My situation is similar to yours. I'm 50. Single. No kids. Extended family who really care about me..lots of friends.. a guy I'm KINDA seeing..a cat I love..but no reason I really wanna blast myself with dangerous chemo just to maybe get a couple more years or something.

I feel fortunate my 2 tumors are hormone positive. I'm getting a unilateral mastectomy, end of this month, and my BS says I probably won't need chemo. BTW I saw a study that suggested if you're hormone positive and have 1-3 positive nodes, chemo really isn't gonna help all that much more.

Maybe ask your dr about radiation..that's what my BS is talking about, if I have positive nodes.

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/27/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Dec 5, 2017 08:30PM Nurse4u2day wrote:

Ckat I have no clue what you have decided to do but let me say this, my very dear friend was ER/Pr positive and one node with macro mets . My oncologist recommended that she have chemo but after a few more referrals she found an oncologist that did oncotype that came back low so he said no no and no to radiation. Well 1 1/2 years later she was just diagnosed with a recurrence . ShE will now have chemo. Now we are just waiting to see how much it has spread

Inflammatory Breast Cancer ( IBC ) stage 3c Nov 2013.
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Dec 5, 2017 08:43PM Ckat wrote:

Thank you everyone for responding. I ended up doing chemo--12 weekly Taxol with 4 Cytoxan. I'm halfway through and using cold caps. I will do radiation afterward.

Dx 8/12/2017, IDC, Left, 1cm, Stage IIA, Grade 1, 2/3 nodes, ER+/PR+, HER2- Surgery 9/9/2017 Lumpectomy: Left Chemotherapy Cytoxan (cyclophosphamide), Taxol (paclitaxel)

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