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Topic: Told cancer free after bilateral mastectomy but...

Forum: Pain —

Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Jan 5, 2019 04:45PM

dlittkemann wrote:

I'm getting pain in back... kind of ribs. Does everyone worry about every pain now? Or is it just me. Yes I got great news in Nov but I have a pain and had it all during chemo. Dr said not to worry buthow do u deal w the worry of every pain? I assume gets easier with time?

Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Chemotherapy 6/25/2018 Radiation Therapy 1/20/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right
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Jan 5, 2019 04:54PM - edited Jan 5, 2019 09:43PM by WC3

As far as breast cancer goes, I would be wary of any doctor who proclaims someone is cancer free as opposed to having no evidence of disease. "Cancer free" just seems like a claim that we can't really substantiate yet being breast cancer has a history of going dormant and popping up again years or decades later.

Pathologic complete response (pCR) to chemotherapy. 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 Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin) 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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Jan 5, 2019 06:25PM dlittkemann wrote:

well wow. Didn't need to hear that right now. Maybe she did say no evidence of disease??? I guess I like to think of it as being free.

Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Chemotherapy 6/25/2018 Radiation Therapy 1/20/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right
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Jan 5, 2019 06:33PM - edited Jan 5, 2019 07:29PM by dlittkemann

I'm well aware of recurrence being an issue. I was asking about the pain part. That's my question.

Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Chemotherapy 6/25/2018 Radiation Therapy 1/20/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right
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Jan 5, 2019 08:41PM edwards750 wrote:

Since I didn’t have chemo I don’t know whether back pain is the norm. Hopefully someone who has had that treatment can address your concerns.

I can say with absolute certainty that you do worry about every ache and pain once you’ve been DX. Let me rephrase that - I do however, I bet a lot of others do as well. It’s hard if not impossible to manage that fear factor when you have been branded with the C word. Goes with the territory/DX.

Mincing words like NED or cancer-free is just rhetoric. To me it doesn’t matter which term they use because the end result is the same for now. Cured is another story. There is no cure - if only. We all just manage our disease.

We have all heard horror stories about the beast coming back after multiple years. That’s not the norm but it does happen. Time does help. Btw I was 7 years out last August and I still go into anxiety mode before my annual mammogram.

If the pain persists I would get checked. Despite your doctor assurances not to worry do it for your ownpeace of mind.

Good luck.

Diane

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Jan 5, 2019 08:46PM jo6359 wrote:

dlitt- during chemo I did experience occasional pain in my back. My oncologist was not concerned at all. I did speak to several other women receiving chemo and a few of them did experienced a significant amount of pain during and several months upon the completion of chemo. If you are really concerned can you request a scan? I was told by my MO bone pain was quite common with t + C.

Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Dx 1/29/2018, DCIS, Right, Stage 0 Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Chemotherapy 2/16/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/16/2018 Herceptin (trastuzumab)
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Jan 5, 2019 08:49PM Meow13 wrote:

Don't you love it, oncologist never seems to concerned about side effects. So focused on killing the cancer.

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Jan 5, 2019 09:03PM jo6359 wrote:

Meow13- at one point my hands and forearms were covered in blisters. My Oncologist looked at the blisters and said, "hmmm". and " you heal quickly". He was mostly concerned about diarrhea, extremely low wbc's and weight.

Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Dx 1/29/2018, DCIS, Right, Stage 0 Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Chemotherapy 2/16/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/16/2018 Herceptin (trastuzumab)
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Jan 6, 2019 12:27AM - edited Jan 6, 2019 12:27AM by wallycat

I don't think WC3 was trying to scare you, just wanting to make sure you have a good doctor. Some say things to make us feel better and obfuscate facts so we don't stress. I wish I could tell you the worrying stops. Maybe for some gals but I'm going to start year 12 in April and anything unusual still brings me to the ugly place. Breast cancer is one of those incurable ones. It isn't to say we all will get a recurrence; many gals end up growing old and dying of something else/natural, but the reality is what it is. I think that is why the concerns and worries seem to persist. I hope you can find some doc that can reassure you the pain is just from treatment. And I hope you are amongst the lucky ones that never deals with this again.

On a brighter note, there are new and better and more targeted treatments cropping up all the time. Maybe those of us that fret will find some comfort in that and it will help our concerns. Best to you.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jan 6, 2019 12:29AM AliceBastable wrote:

Re: cured vs. NED vs. cancer-free: I was fortunate not to need chemo, but my attitude is that they removed the cancer surgically and mopped up with radiation. Unless and until I have proof that it's popped up again somewhere, I HAD cancer, past tense. This goes for all the cancers I've had. If something seems worrisome, I'll check with a doctor, but I just don't want to spend time or energy on "what if."

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jan 6, 2019 08:13AM dlittkemann wrote:

thank you so much. I appreciate the words of encouragement x

Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Chemotherapy 6/25/2018 Radiation Therapy 1/20/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right
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Jan 6, 2019 08:17AM dlittkemann wrote:

Thank u all. I am sure the worrying will subside a bit as time goes on. The last part of my journey for treatment is radiation so I'm still in the process. Probably normal to worry right now. Thank u to all who left encouraging posts.

Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Chemotherapy 6/25/2018 Radiation Therapy 1/20/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right
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Jan 7, 2019 12:34AM Lillo57 wrote:

alicebastable, well said. I wish there was a like button on this site👍🏻

Dx 1/2016, IDC, Right, 2cm, Stage IIB, Grade 3, 1/27 nodes, ER-/PR-, HER2- Surgery Lumpectomy: Right Radiation Therapy Chemotherapy AC + T (Taxol)
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Jan 7, 2019 12:42AM jo6359 wrote:

Alice- I like your way of thinking. I'm not there yet. Neither do I dwell on having cancer. I have one more treatment left. I don't feel comfortable saying I had cancer instead I usually state I'm receiving treatment for my cancer.

Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Dx 1/29/2018, DCIS, Right, Stage 0 Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Chemotherapy 2/16/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/16/2018 Herceptin (trastuzumab)
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Jan 7, 2019 06:40AM leftduetostupidmods wrote:

Chemo has its own set of side effects and a lot of those are various pains. I know that at the end of it I was walking like a penguin because my lower back/hips were hurting so bad - kind of a mix between birth pain and a broken tailbone.

You also didn't mention if you had reconstruction or if you started taking AIs - those also contribute to pain.

Please don't get defensive when someone tells it as it is. As the sister who posted above, I'm 9+ years out and still any new pain brings me in that dark place. Because this IS the harsh truth: we're never cured. It's never gone. With the imaging technology they have right now they can't give us any 100% assurance. You will have to learn to live with the fear and not let it control your life. It took me more than 3 years before the first thought in my mind at waking up in the morning was not about BC.

This being said, there are two rules of thumb: if a pain lasts more than two weeks, get to your doctor. Second, if something really really worries you, get it checked. Because for one, nobody knows your body better than you, and because worrying is not good for you.

This being said, one of the known side effects of BMX is costochondritis, inflammation of the connective tissue over the ribs. Normally that appears only in young athletes after physical effort, but in our case it's because of all the trauma our torso went through with the mastectomy. I've had it since the mastectomy back in October 2009.

left this forum this time for good due to how stupid moderators are
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Jan 7, 2019 07:19AM dtad wrote:

seachain...I had costochondritis last year for about 3 months. Thankfully it went away the same way it came. The pain was debilitating. Just want to put it out there so others are aware of it. My pain was on the right side so I wasn't worried about my heart. However I was worried about a recurrence. My doc poo pooed it like so many do. We have to be our own advocates and be aware of side effects from the drugs and the treatments. Good luck to all.

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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Jan 8, 2019 11:12AM nash wrote:

If the pain persists for months or gets markedly worse, ask for a bone scan. If nothing else, it will put your mind at ease.

As far as the worrying goes, I know it's hard not to. But take it from me, try to not worry, b/c things are just going to go the way they are going to go. You don't want to waste good years with fear in your head constantly.

I had my first primary in 2007, a local recurrence in 2015, a new primary in 2018, then brain mets in 2018.

I spent several years after the first primary in 2007 worrying. A lot. Then after awhile, things faded into the background and I had a nice stretch of several years where cancer was not on my mind. Then the local recurrence hit in 2015, and things have been a constant nightmare ever since. So I'm grateful for the years I had where I just lived my life as normally as possible, and the only things I had to do were to pop my Tamoxifen and get my yearly breast MRI. Now, with the brain mets, I have more worry than I know what to do with.


Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Jan 8, 2019 04:13PM jo6359 wrote:

nash- how overwhelming this must be for you. Is your treatment regime stopping the progression of the brain Mets? Physically how do you feel?

Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Dx 1/29/2018, DCIS, Right, Stage 0 Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Chemotherapy 2/16/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/16/2018 Herceptin (trastuzumab)
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Jan 8, 2019 10:17PM nash wrote:

Hi jo6359. I had cyberknife on the brain lesion June 2018 and that knocked it down. I haven’t had any new lesions since then, but I’m having brain MRIs every three months to check.

I’m on Ibrance/Faslodex/Zolodex. None of that passes through to the brain, but it seems to be holding things below the neck steady for now.

I’m very tired, but overall feel pretty well everything considered


Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Jan 8, 2019 10:24PM jo6359 wrote:

Im glad you are doing okay. I'm especially glad you haven't developed any new lesions. Fatigue seems to be a common side effect. Hang in there.

Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Dx 1/29/2018, DCIS, Right, Stage 0 Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Chemotherapy 2/16/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/16/2018 Herceptin (trastuzumab)
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Jan 17, 2019 10:53PM Zupozi99 wrote:

hi Nash,

Do you still have tamoxifen as your hormonal therapy or use AI drugs instead?


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Jan 18, 2019 03:33PM nash wrote:

Hi, Zupozi99. I had a recurrence while on Tamoxifen. I'm on Ibrance/Faslodex/Zolodex now.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain

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