Any testimonies where cancer didn't return?

Posted by Rom828 @jgallagher04921, Jun 4, 2023

I am new to this support group ( few weeks), but from what I have read there seems to be a trend with cancer coming back ( with all different diagnosis and treatment types). As I am still in the process of deciding on treatment, I'm starting to wonder " why bother going through all the side effects and feel ugly in the process if she-devil is just going to return".

Is there anyone out there that can speak to their win of cancer not coming back. What was ur diagnosis and treatment plan.. how long has it been since u were diagnosed?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Breast cancer.org article says risk of long term recurrence depends on:
cancer size
number of positive lymph nodes (lymph nodes that contain cancer are called positive)
hormone receptor status
HER2 status
age at diagnosis

Article title

Risk of Early-Stage Breast Cancer Recurring 10 or More Years After Diagnosis Linked to Estrogen Receptor Status, Other Factors

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I'm fortunate - dx 11/21 I have TNBC BRCA2+, I had neoadjunct chemo - my cancer responded very well. My only side effect was I lost my hair - which is growing back. Next I had bilateral mast, then lymph node pathology detected small evidence so I next had radiation. Only challenge with that was holding my arms up after bilateral - chest muscles still a little tight so it was a little uncomfortable but definitely not painful or hard to hold the stretch. I'm in the process of getting approval for maintenance medicine. I'm 70 - I read about the side effects many posted - definitely and it scared me that I might have them too. I decided the risk of possibly having those side effects were a short term inconvenience to what I have to look forward to - grandbabies (3 that I want to see graduate and maybe get married); retirement, travel, and experiences that were on my bucket list before this dx. Every person has to weight what they are willing to experience for that next phase when the wild ride slows down. Fortunately everyone's journey is their own - but there are many that have gone before and can provide advice from their experiences - BUT KNOW - this journey is your own - the experiences will be your own - and the decision of what treatments you choose will be your own. Think about what lies ahead of you and the information you get from your medical team. Do your own research find out what the side effects are; are there things you can and are willing to do to minimize those side effects. How does having those treatments and potential side effects reduce your chances of recurrence - these are questions only you can answer for your self whether it is work the risk.

It is not easy to travel this path; but surround yourself, if you can with a support team - medical and family and friends that hopefully will listen when you need to talk through the decisions only you can make for yourself. Best of luck and know that everyone on this support site will weigh in with their responses when you ask questions. But know they are only speaking from their experience - unfortunately some have had it more challenging than others - but there are many that have also had great success and longevity from the treatment they had.

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@windyshores

@rom828 are you post-menopausal? Most of us do aromatase inhibitors though concerns about bones make some docs think about Tamoxifen. I did an aromatase inhibitor in spite of pretty severe osteoporosis before ever starting. I just finished Tymlos and my bones are better than 8 years ago!

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Hi windyshores:

Any side effects with Tymlos and what are they telling you that you have to take next?

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I could not tolerate a full dose and started with two clicks out of 8 on the Tymlos pen and moved up a click each week. Most of the 18 months I have been on 7 clicks. sometimes 6, sometimes 8. This last month I am doing full dose with few side effects. My gains were 20% in spine, from severe osteoporosis to almost osteopenia, and 9% in hip. I am still concerned about my femur neck.

Side effects included fast heartbeat for a few minutes (not bad at all), headache the first weeks only, mild dizziness the first weeks only, and fatigue which got better when I got up and out instead of resting. For me, side effects eased fairly quickly. Everyone is different. My doc was happy with 6 out of 8 clicks but I did get more.

My current endo wants me to do Reclast but due to my sensitivities and health issues (Kidneys aren't good) will do a 20% test dose and after 3 months I can choose the next dose.

I love my endo and he is very accommodating but I am seeking a second opinion to consider Evenity, even if just for 4-6 months, to address my femur neck and get more gains in general. My current endo says there is "no data supporting" that but many on this forum are following Forteo or Tymlos with Evenity. Then I will lock in gains with a bisphosphonate. Either partial dose Reclast more often than once/year or an oral, though with GERD not sure I can do oral.

What is your situation?

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Regarding aromatase inhibitors, many people including myself did not have awful side effects. But some do have a hard time. I don't think there is any way to predict how our bodies react. I am sensitive to so many food and meds so I didn't expect to tolerate them so well. I switched from anastrazole to letrozole and then switched to brand name but in both cases it turned out it was just the fillers used by certain manufacturers that bothered me. Joint pain improved if I walked more than 20 minutes.

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@gina5009

I hope I can give you some good news. I was 35 when I had my breast cancer. Had a Radical Mastectomy with 14 lymphs removed. Two years later I had the other breast removed. Getting too many non-cancerous lumps and having biopsies got to be too much. That was 57 years ago. I did have a new DERMATOFIBROSARCOMA, in 1988. Just took it out, no recurrence. I also recently had a squamous cell carcinoma removed, no recurrence, and now I am being followed for MCUS once every 6 months. No Chemo, No Radiation, No Tamoxifin, Etc. None of this was available at the time of my surgery. With regard to all the new treatments, I cannot give an opinion, since it was never offered to me. At the time of my surgery, not many women survived, I guess it just was not my time, but here I am. I forgot to tell you I am 92. God bless you.
Gina5009

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edaw@edaw June 8, 2023
Hi, Gina5009!
Thanks for sharing, you are a blessed 92 year older Queen! Love your story........it's one of endurance and hope that's so encouraging to many of us I am sure.
I am a very prayerful person and ask God to give me a calm Heart and Peace of Mind that surpasses all understanding by means of God's Son, Christ Jesus. (Philippians 4:6, 7) I consult with my doctors and do extensive research, ask God to help me and my doctors come up with the best therapy for me. And let the rest lie entirely with God's will!

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Thank you for your kind response. You are very wise, and I believe each of us must find their own path. Fortunately, I was quite young, and not very knowledgeable so my first thoughts were that I was going to die. My husband got up each morning before 5 a.m. to dress and go across town to pray for me before going to work. He did this for one solid year. I did not die by the second year, but I was having biopsy's for fibroid lumps, I had the second breast removed. When I reached the thrid year and did not have a recurrence I decided maybe I had a chance and decided to give the worry a rest and begin to live my life. Gradually, ever so slowly, life became more and more normal and here I am today. God had plans for me, I could not know or see like taking care of my mother for 10 years, raising two children, and caring for my husband for a very long time until he developed lung cancer from a Service Connected Disability, and now my son lives with me following his being hit by a car. Driver was on telephone and did not see him. So just know, we have no idea what God plans to do with us, and what your life becomes is not in your power to know. Just be glad for every day you are given, accept it with joy, and give this joy to as many other people as possible. You will be amazed at how wonderful your life has become.
Gina5009

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@windyshores

I could not tolerate a full dose and started with two clicks out of 8 on the Tymlos pen and moved up a click each week. Most of the 18 months I have been on 7 clicks. sometimes 6, sometimes 8. This last month I am doing full dose with few side effects. My gains were 20% in spine, from severe osteoporosis to almost osteopenia, and 9% in hip. I am still concerned about my femur neck.

Side effects included fast heartbeat for a few minutes (not bad at all), headache the first weeks only, mild dizziness the first weeks only, and fatigue which got better when I got up and out instead of resting. For me, side effects eased fairly quickly. Everyone is different. My doc was happy with 6 out of 8 clicks but I did get more.

My current endo wants me to do Reclast but due to my sensitivities and health issues (Kidneys aren't good) will do a 20% test dose and after 3 months I can choose the next dose.

I love my endo and he is very accommodating but I am seeking a second opinion to consider Evenity, even if just for 4-6 months, to address my femur neck and get more gains in general. My current endo says there is "no data supporting" that but many on this forum are following Forteo or Tymlos with Evenity. Then I will lock in gains with a bisphosphonate. Either partial dose Reclast more often than once/year or an oral, though with GERD not sure I can do oral.

What is your situation?

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Hi windyshores:

I have osteoporosis of both hips and have has to wait 2 months to get a appointment from my gynecologist referral to a nurse practitioner who works with those with osteoporosis at a bone and joint center. Gynecologist gave me referral as soon as she got my osteoporosis scores.
This NP got her degree in 2019.

I have reached the skeptic point in my BC journey.
No matter what she (NP) suggests, I am not going to jump for it and will say that I need to think about and research it and will get back to her in a few days.

I have had so many errors in my care from all fields as the medical fields are no longer focused in what they are doing or research patient’s history and needs.

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@timely

Hi windyshores:

I have osteoporosis of both hips and have has to wait 2 months to get a appointment from my gynecologist referral to a nurse practitioner who works with those with osteoporosis at a bone and joint center. Gynecologist gave me referral as soon as she got my osteoporosis scores.
This NP got her degree in 2019.

I have reached the skeptic point in my BC journey.
No matter what she (NP) suggests, I am not going to jump for it and will say that I need to think about and research it and will get back to her in a few days.

I have had so many errors in my care from all fields as the medical fields are no longer focused in what they are doing or research patient’s history and needs.

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@timely maybe you can research before the appointment not after! There aren't that many medications: bisphosphonates, Prolia, Forteo, Tymlos and Evenity.

If your bones aren't too bad and you want a more "holistic" approach, check out Keith McCormick's books. You can also do a consult with him.

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@timely

Hi windyshores:

I have osteoporosis of both hips and have has to wait 2 months to get a appointment from my gynecologist referral to a nurse practitioner who works with those with osteoporosis at a bone and joint center. Gynecologist gave me referral as soon as she got my osteoporosis scores.
This NP got her degree in 2019.

I have reached the skeptic point in my BC journey.
No matter what she (NP) suggests, I am not going to jump for it and will say that I need to think about and research it and will get back to her in a few days.

I have had so many errors in my care from all fields as the medical fields are no longer focused in what they are doing or research patient’s history and needs.

Jump to this post

Hi,
I am 70 and I had triple negative ILC in my L breast and estrogen positive IDC in my R breast diagnosed in late 2022. I had a bilateral mastectomy in March 2023. I also have osteoporosis and had spinal compression fractures about the time I was diagnosed with the bc which are painful. I wish I had gone on osteoporosis meds earlier so I could have avoided those!
Had my bc treatment at Mayo. The oncologist started me on Zometa infusions for the osteoporosis because not only does that med help with osteoporosis, but women who have had breast cancer and were on Zometa for osteoporosis have a higher 10 year survival rate than those who were not on Zometa. So it helps us 2 ways! I will have infusions every 6 months for 3 years. I am on Tamoxifen since that can help bones for the estrogen positive ILC. Praying for the best possible outcome for all of us on this journey.

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