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Topic: Treatment Question

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Nov 20, 2019 09:28AM

Willfight35 wrote:

On Nov 18, I received the news I wasn’t ready for, and immediately had to make the decision if lumpectomy or mastectomy, surgeon suggested and provided reasons why a lumpectomy and that is what I have chosen. Currently do not know anything further on the cancer nor nodes etc and will not till after surgery. I have done so much research since being told...trying to figure everything out in my head, without really knowing fully what is going on.

My question is, has anybody opted out of rad or chemo if required and did an alternative options? Chemo scares the crap out of me....

Surgery 12/3/2019 Lumpectomy: Left; Lymph node removal: Sentinel Dx 1/6/2020, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 1/7/2020 Lumpectomy: Left
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Nov 20, 2019 09:37AM - edited Nov 20, 2019 12:50PM by Ingerp

Everyone who gets a dx has their own decision process. I'm a numbers person. When my RO told me that radiation would cut my probability of recurrence in half, it was a no-brainer. I pushed back on chemo too--I'm triple positive and asked about doing Herceptin without Taxol. I did a lot of research, as did my MO. It was a tough day when I made the decision to go ahead with it. Tools like this one can be helpful:

https://breast.predict.nhs.uk/tool

In my case (as my BS had suggested), hormone therapy is more important than rads or chemo. It's helped me stay motivated to keep taking it.

(Just adding that if you're ER+/PR+/HER2-, there's a good chance chemo won't be recommended. You'll likely get an Oncotype test to determine whether or not chemo would be beneficial.)

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/18/2018 Taxol (paclitaxel) Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Nov 20, 2019 09:49AM - edited Nov 20, 2019 11:22AM by Willfight35

This Post was deleted by Willfight35.
Surgery 12/3/2019 Lumpectomy: Left; Lymph node removal: Sentinel Dx 1/6/2020, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 1/7/2020 Lumpectomy: Left
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Nov 20, 2019 11:22AM Willfight35 wrote:

thank you Ingerp for the quick response, I have been looking at alternative options like going to Mexico concerning treatments....I know people that have gone and have come back after a couple of weeks in great health without using chemo or rad. Am I crazy to look into these options?! With the age I am I just want to make the best decisions so going forward this will not be a battle every min of everyday.

It is now the second day from when I have been told, and I am trying to hold it together....i run my own business so that comes with its own complications, I don’t want seem scared in order to not scare others...but all I want to do is scream...sorry I am just having a moment

Surgery 12/3/2019 Lumpectomy: Left; Lymph node removal: Sentinel Dx 1/6/2020, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 1/7/2020 Lumpectomy: Left
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Nov 20, 2019 11:46AM Moderators wrote:

Dear Willfight35,

Welcome to the BCO community. We are sorry for your diagnosis and all anxiety that it brings. You have reached out to a good place for support and helpful information as you move through next steps. It will be helpful for you to have more information about your particular cancer once your surgery is completed. Such will hopefully offer you more options as to what you might do next. Keep us posted and let us know how we can be of help.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Nov 20, 2019 12:31PM - edited Nov 20, 2019 03:52PM by WC3

I had 6 rounds of TCHP. The T and C were the chemotherapies, taxotere and carboplatin, and it was really nothing to be afraid of. I had very little nausea and if I had any, it was mild and only a few days of the first week. The thing that bothered me the most were the taste changes. I also got pretty runned down due to the anemia but considering it was literally killing the cancer and I have been sicker from run of the mill things, I think the chemotherapy was a pretty good deal. I had chemotherapy before surgery and had a complete pathologic response, meaning they found no remaining invasive cancer at the time of surgery.

I do know of people who have gone to one of those alternative clinics in Mexico and elsewhere and the treatment was ineffective. One of the women has died. She started out with Stage IIA IDC and died within 2 years. Stage IIA IDC has something like a 95% or greater 5 year survival rate when treated conventionally. In her case she had declined even surgery but that the cancer progressed as it did demonstrated no positive impact of the alternative treatments.


Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 20, 2019 12:55PM - edited Nov 20, 2019 01:02PM by Ingerp

All I'll say is I love Western medicine. The data backs up the recommended treatment protocols. Many (most?) women will tell you chemo wasn't as bad they'd anticipated and many (most?) gain weight through chemo. I sure did--ate a *lot* of protein, which really helped my blood counts. I also thought sweets tasted pretty normal, and conventional wisdom is to treat yourself when you're going through it, so I had chocolate chip cookie dough ice cream every day. I never felt awful--mostly just heavy, like getting up out of a chair was harder than it should be, but that was only for a few days after each tx.

It's hard to get your head around a cancer diagnosis, but it's also most often a bump in the road that you'll get on the other side of.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/18/2018 Taxol (paclitaxel) Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Nov 20, 2019 06:56PM Georgia1 wrote:

Chiming in to agree with Ingerp. My first reaction was NO - no rads, no chemo, no nothing! But the scientific research was compelling, radiation was fairly easy once the shock wore off, and an Oncotype test showed no chemo was necessary. So my advice is to get copies of all of your test results, ask your doctors as many questions as you like, and take it one day at a time.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 20, 2019 07:00PM DorothyB wrote:

It is early to be making a lot of treatment decisions. I did radiation and it really wasn't that big of a deal. After getting Oncotype results w/ recurrence score of 29, I struggled with whether to do chemo or not. I looked at research, oncotype's documentation that was targeted to doctors, etc. I did end up opting out of chemo. I am being diligent about doing cardio and strength training as the two together have been shown to decrease chance of recurrence. I'm also still working to make dietary changes.

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3
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Nov 20, 2019 09:44PM MinusTwo wrote:

Wilfight - you are thinking way too far down the line. You don't know stage, grade, whether your ER/PR+ whether you're HER2 positive. Whether it's DCIS or IDC or ILC. Talk to your doc a get a copy of the diagnosis first. There are so many other tests that might be done based on all those numbers. All of this is in your records NOW before the surgery - or should be.

Remember - surgeons cut. That's what they're trained to do & that what they do. If you do a lumpectomy, you'll likely have rads. I recommend you talk to a medical oncologist. Get your reports in order and request a second opinion. An MO can better answer questions about various treatments depending on your data.

It is my opinion along with others that the docs in the US have the latest & best treatments available.

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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Nov 20, 2019 10:54PM Willfight35 wrote:

thank you all for your reply’s, this does help me right know to calm me down...my mind is going a mile a min. Concerning my results, surgeon doesn’t have any of those details and state they can’t until after the surgery because they weren’t able to get enough to confirm when they did the biopsy. When they did the biopsy, they had an extremely hard time getting into the lump, they were only able to get two small samples. They had enough apparently to state cancer but not enough, to tell me any other details.Not sure if they do things different in Canada, sorry I didn’t note before that I am from Canada.

Surgery 12/3/2019 Lumpectomy: Left; Lymph node removal: Sentinel Dx 1/6/2020, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 1/7/2020 Lumpectomy: Left
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Nov 20, 2019 11:20PM Beesie wrote:

Where are you in Canada? Healthcare is provincial, and each province has their own guidelines. That said, the basic process is the same everywhere and whether in Canada or the U.S.. From my years on this site, I'd that by far, more of the differences we see in diagnostic and treatment protocols tend to be related to the quirks of the individual doctor or the screening facility or hospital.

Do you have a copy of your screening and diagnostic imaging (any mammograms or ultrasounds or MRIs you've had) and a copy of the pathology report from your biopsy? The imaging reports should provide an estimate of the size of the area of cancer, and the pathology report should state the type of breast cancer (DCIS, IDC, ILC...) and possibly will have hormone status and/or grade. Wherever you live, you have a right to these reports, and you should get them and keep them for your records.

As for deciding on the treatment plan, as the others have said, knowing so little about your diagnosis, it's premature to be making these decisions. Until you understand the type of cancer, the pathology and aggressiveness (or lack of same) of the cancer, and the metastatic risk from the cancer, and until you know which treatments are recommended and how much they will reduce this risk, it's all speculation. If your pathology is favorable and your risk is low, it might be an easy decision to opt out of a recommended treatment. But if your pathology is unfavorable and your risk is high, you might decide that you want the most aggressive treatment. Or you might decide at that point to look for alternatives. Find out what you are facing before coming to any conclusions or making any decisions.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 21, 2019 08:03AM - edited Nov 21, 2019 08:06AM by Willfight35

Good Morning Bessie, I am in Ontario, the size of it is between 2 to 3cm, alittle bit bigger then a marble the doctor stated. Concerning all the other details, he stated the biopsy couldn't provide that as it was such a small amount of tissue. The complete work up will be done after the surgery on the lump. Based on what he knows so far he states I will need rad for sure and he stated he would be surprised if I didn’t need chemo...but thinking he is stating it in order for me to not be surprised?!? As they don’t know what if it is in the nodes are not

I am trying to not think ahead, it is just hard not to!! It is so confusing right now...because of the lack of information...he states I have cancer but can’t give anymore info. I was an odd case to begin with apparently when I got all my testing as looked and felt my like an cyst


thank you all though for the support

Surgery 12/3/2019 Lumpectomy: Left; Lymph node removal: Sentinel Dx 1/6/2020, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 1/7/2020 Lumpectomy: Left
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Nov 23, 2019 09:27PM Bejeweled wrote:

Willfight - I agree with those above. I truly do understand the mind spinning and getting ahead of yourself. I am the same way. I definitely think that as soon as you can have your lumpectomy and get more complete pathology results, you will feel better. At least at that point, you can evaluate the plan that is given to you, and you can then determine if you need more opinions or if you want to consider alternative therapies.

Do you know when your lumpectomy will be yet?

Dx 8/27/2019, IDC, Left, 4cm, Stage IIA, Grade 3, 1/3 nodes, ER+/PR-, HER2+ (FISH) Surgery 10/28/2019 Lumpectomy: Left; Reconstruction (left); Reconstruction (right) Chemotherapy 12/4/2019 AC + T (Taxol) Targeted Therapy 1/29/2020 Herceptin (trastuzumab) Radiation Therapy 5/13/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 7/1/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy
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Nov 23, 2019 09:48PM - edited Nov 23, 2019 09:48PM by msphil

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Nov 23, 2019 10:46PM MinusTwo wrote:

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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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Nov 24, 2019 12:09AM Jackster51 wrote:

8 years after chemo with Taxotere and I am still struggling with permanent side effects... Permanent hair loss and neourapthy in my feet not allowing me to wear closed toed shoes or stand on my feet for very long. Just my experience with Taxotere as I wish I would have known this before hand. Best of luck to you! It's going to get easier for you once these big decisions are made ..

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