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Topic: PCR but still worrying excessively

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: May 7, 2019 06:28AM

whippetiggy wrote:

I haven't posted in a very long time. I'm at the 2.5 yr mark with TNBC. I had a pCR but every ache and pain sends me over the edge with fear and worry.

I fell out of a tow truck and twisted my knee so badly that I couldn't walk for 2 weeks. Prior to that, I walked nightly. I'm overweight so I'm not active like some people. I have a slower, shorter walking routine than pre cancer and pre steroids weight gain. But after the knee injury, I've sat around in pain, back, neck, headache, shoulders, etc. 1/2 of my brain says it's because I'm sitting in bed hunched over computer games with legs crossed for many hours daily. The other 1/2 of my brain says "back pain - liver, lung, ovarian cancer. Headache - brain cancer. General aches and pains - liver, kidney, bone, ovarian, etc". You get the idea.

I have an appointment with my PCP for my yearly physical next month.

My questions are: is this worrying about every twinge normal? And, does it ever subside?

Dx 10/2016, IDC, Left, 2cm, ER-/PR-, HER2- Chemotherapy 11/15/2016 AC Chemotherapy 11/29/2016 AC Chemotherapy 12/12/2016 AC Chemotherapy 12/27/2016 AC Chemotherapy AC Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Left; Lymph node removal
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May 7, 2019 07:49AM santabarbarian wrote:

I am not quite one year out from diagnosis with TNBC. Also pCR. I can understand your worry: Normal aches and pains, or signals of progression?

I was about 15 lbs heavier prior to diagnosis than I am now. I had several aches (hip, knee) that I attributed to aging. But now I have been on a major program of supplements/antioxidants for the last year, and regular on exercise, and my aches have gone! I think I had a lot of inflammation before that I don't have now, thanks to doing a better job on taking in the nutrients I need, particularly Omega 3 fatty acids and curcumin (my program of supplements was designed by an integrative Oncologist I saw).

Maybe you can work on lowering inflammation in your diet, adding sensible supplements, and see what else might help you get to a pain-free state. (I am glad I am starting at pain free, for a baseline!)

Exercise is one of the main co-factors with better outcomes. 3-6 hours per week of exercise is considered the sweet spot (30 mins+ per day). I am being very diligent in these areas... maybe that's where I put my "worry" energy: making sure I am following a healthy plan...

You are right, hunching in a weird position on the computer is a good way to get achy! 2.5 years is awesome!!!!

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
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May 7, 2019 10:41AM whippetiggy wrote:

Thanks for your response. I wasn't given a diet. I live on the coast of New England and seafood is a staple but we also eat a lot of beef. I'll have to look up curcumin. Does anti inflammatory food help with weight loss and energy? When I was going through chemo, I gained 40 lbs. I've only lost about 10 of it. Not happy!

Dx 10/2016, IDC, Left, 2cm, ER-/PR-, HER2- Chemotherapy 11/15/2016 AC Chemotherapy 11/29/2016 AC Chemotherapy 12/12/2016 AC Chemotherapy 12/27/2016 AC Chemotherapy AC Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Left; Lymph node removal
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May 7, 2019 01:04PM santabarbarian wrote:

You might want to see a naturopathic or integrative physician who can make a comprehensive plan for you.

Basically, my diet is to "eat the rainbow" of multicolored above-ground veggies, plus berries, nuts and seeds, and fish. I eat small amounts of eggs, dairy and meat - hopefully organic - and I also eat some beans/ legumes. Also, I avoid eating anything that isn't nutrient-dense... bread, sweets, chips, booze.

For weight loss, a low carb/keto diet can really work well. Its basically the same as above, but paying attention to limiting carbs... eating less fruit and less beans.

Any kind of "itis" is inflammation... bursitis, arthritis.... so anti inflammatory eating will help w pain. My energy has also improved-- from the supplements, I think.







pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
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May 9, 2019 09:39AM kcrd4766 wrote:

Yes, curcumin, found in turmeric, may help support a healthy inflammation response in the body. One thing you may also want to look into is the absorption of your curcumin supplement. For example, a form that is hydro-soluble absorbs better.

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May 10, 2019 06:08AM whippetiggy wrote:

Thank you. I haven't had a quiet moment to read up on it yet.

In the meantime, does anyone else worry excessively that every twinge is the cancer spreading?

Dx 10/2016, IDC, Left, 2cm, ER-/PR-, HER2- Chemotherapy 11/15/2016 AC Chemotherapy 11/29/2016 AC Chemotherapy 12/12/2016 AC Chemotherapy 12/27/2016 AC Chemotherapy AC Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Left; Lymph node removal
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Oct 31, 2019 06:20PM smc123 wrote:

Whippetiggy, I finished treatment about 3 years ago and I still constantly worry about every pain. My MO practically yelled at me at my last appointment that I was cured...and that I had a complete pathological response. Nothing really puts my mind at ease...so I just started wwith a new therapist. Good luck to you.

Dx 2/1/2016, IDC, Left, Grade 3, ER-/PR-, HER2- Chemotherapy 2/23/2016 AC + T (Taxol) Surgery 8/1/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 10/4/2016 Breast, Lymph nodes Surgery 4/3/2017 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Nov 1, 2019 05:56AM whippetiggy wrote:

Thank you smc for that. Today is my 3-year cancer anniversary and as it turns out I have my MO appt this afternoon. I hope he sees it as your MO did!

Dx 10/2016, IDC, Left, 2cm, ER-/PR-, HER2- Chemotherapy 11/15/2016 AC Chemotherapy 11/29/2016 AC Chemotherapy 12/12/2016 AC Chemotherapy 12/27/2016 AC Chemotherapy AC Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Left; Lymph node removal
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Jan 31, 2020 07:23AM Lady1741 wrote:

Dear Whippetiggy, I'm right there with you. Diagnosed with TNBC IIa, in 3/2018 at 59 - Never missed a mammo to the week for 28 years and BOOM! There it was - first stage 1 then MRI blew it up to Stage II - no lymph node involvement. Treatment was 8 rounds chemo, complete PCR even before my last treatment, BRCA1 carrier (didn't know till they tested me), even though I had been telling docs for 30 years about reproductive cancers on my dad's side of the family (including him) but no history of BC on either side of family. They blew me off and said -- No worries - Devil- BX mastectomy with reconstruction and oophrectomy 11/2018. Just finished the rest of the hysterectomy 10/2019. My head is still reeling, my heart is still broken, and everyday I wake "the gorilla is my room." I just had my 3 month onco follow-up first week of January 2020. He told me all is well. But yes, every twinge, every bit of swelling (I do have some mild lymphedma on occasion in the right arm, it's as though I'm sucked right back into the vacuum once again. I do everything I can - group support - therapist, anxiety meds, extremely spiritual and I still have my days. I will admit the past few weeks I have finally started to feel a bit like my old self again - Happy, playing with my grandkids, seeing my friends, cooking up a storm, excercising, and then something happens like a twinge in an odd place, a swelling from the lymphedema in my arm, and BOOM -- I fall back down the ladder of despair. But I do get myself up and try to go on. What choice do we have?

What I can tell you is so many others who have gone through BC and other dreadful cancers and treatments who are Survivors tell me that with each day it will get better. The fear gets pushed to the back a bit more each day, but then we all have those moments where were just sucked right back in to where it all began. It doesn't last as long each time for me anymore, but you are not alone, and it will get better. There are many wonderful women on this board who have such kind words of encouragement and strength. I suggest you seek them out but stay away from people (not saying they are on this board) you may encounter in daily life who feel the need to tell their story of the friend of a friend of friend who......... --- I hate that and I walk away.

I wish you peace, continued good health, a lightening of your heart and spirit and most important is to find joy in each day that we have been blessed with. I pray for you and me and all these kind ladies that we will be given Grace and Peace and continued good healthHeart

Love and prayers,

Diana






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Feb 14, 2020 10:59PM Eauburn1234 wrote:

i made it to 5 years from Dx last July. I spent entirely too much of that time worrying. My anxiety was causing physical ailments. I got on Effexor last December and I haven’t thought about a reoccurrence since! The aches and pains also disappeared... it’s crazy what anxiety can do to your physical self. Take care of yourself!

Dx 7/10/2014, Both breasts, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 8/1/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 1/1/2015 Mastectomy
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Feb 18, 2020 05:38AM ddweedee wrote:

Thank you for your post. I hope our other member was able to see it as I was. Bless you!

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Feb 18, 2020 05:44AM whippetiggy wrote:

Congratulations!!! I have been on Prozac since this started. I am three and a half years out from diagnosis and most times I'm okay but when I have random aches and pains I still freak out.

Dx 10/2016, IDC, Left, 2cm, ER-/PR-, HER2- Chemotherapy 11/15/2016 AC Chemotherapy 11/29/2016 AC Chemotherapy 12/12/2016 AC Chemotherapy 12/27/2016 AC Chemotherapy AC Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Left; Lymph node removal
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May 5, 2020 10:54AM santabarbarian wrote:

Never have I been more acutely aware of a body part's internal sensations than I am of my left boob! Think its Mammo coming up in a few months?

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes

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