Breast Cancer spread to the skin!

Posted by ginny100 @ginny100, Dec 26, 2023

Hi there, I am wondering if anyone out there have had breast cancer returning in the skin!!! I had a mastectomy and sentinel node removed 10 years ago. A year ago the scar from the sentinel node removal started itching. My GP sent me for an Ultra Sound. Nothing showing ! 6 months later small itchy pimple size lumps had developed. US again, but nothing showing! 1 year later the lumps are a little bigger and I see my doctor at the Outpatient Surgery at the Hospital. They are not concerned but I want to know what is making these lumps in my armpit, so they do a biopsy and find "small nests of hormone positive breast cancer cells". LABC , Locally Advanced Breast Cancer. They suggest a full on radiation and chemo treatment but I am not ready for that yet!!! As I generally feel really good. Now I have also noticed thickening of the skin on my chest wall. My doctors have said this is uncommon and therefore not easily picked up by them. I would love to hear from anyone who has some experience with this. Thanks in advance😀 Ginny100

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Ginny,
I hope someone answers your question. I know for sure I would not have been seen by a hematologist if I did not ask 3 times for an appointment. I would certainly talk to them more. I feel pretty good too and my hair can now have hot rollers. Realizing i will have a bone marrow transplant and loose it again is crazy.
The fact you found it, watched it, told them amazes me. Get more info on the treatment. That is your right!!

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Thank you Katgob?
Wishing you all the best. In the meantime I will await for anyone sharing my experience with breast cncer in the skin!! Thanks for replying.

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I had a very large mass of cancer in my left breast. Stage 4 mastatic spread to lungs and liver. It has been going down but strange dark areas there now.

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You need to get treatment before the tumors spread.

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Dear @ginny100 - I am very sorry to hear of your development!

I am not a doctor and have not had this myself, but I have 2 friends who also had mastectomies; however, they, too, experienced a similar issue. It is not as rare as it may appear and can be caused by a number of cancers (Ovarian, Lung, etc.). It seems to be a more common development with Breast Cancer.

Given your diagnosis of "LABC , Locally Advanced Breast Cancer", it seems that your breast cancer has spread only to nearby tissue. However, you need more tests to ensure this site is the only one. You may have additional sites. And you do need to be treated, even if this is the only site.

As I mentioned, I am not a doctor, but please, @ginni100, don't wait; I highly recommend you seek immediate attention. If you don't have much faith in your current doctors, please go to a good Cancer Center. If you need help finding a good cancer center, let us know, and we may be able to give you good recommendations.

Some Information:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9097810/#:~:text=Locally%20advanced%20breast%20cancer%20(LABC,metastasis%2C%20staging%20exams%20are%20necessary.
Please let us know if we can help you.

HUGS,

D.

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@danielad

Dear @ginny100 - I am very sorry to hear of your development!

I am not a doctor and have not had this myself, but I have 2 friends who also had mastectomies; however, they, too, experienced a similar issue. It is not as rare as it may appear and can be caused by a number of cancers (Ovarian, Lung, etc.). It seems to be a more common development with Breast Cancer.

Given your diagnosis of "LABC , Locally Advanced Breast Cancer", it seems that your breast cancer has spread only to nearby tissue. However, you need more tests to ensure this site is the only one. You may have additional sites. And you do need to be treated, even if this is the only site.

As I mentioned, I am not a doctor, but please, @ginni100, don't wait; I highly recommend you seek immediate attention. If you don't have much faith in your current doctors, please go to a good Cancer Center. If you need help finding a good cancer center, let us know, and we may be able to give you good recommendations.

Some Information:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9097810/#:~:text=Locally%20advanced%20breast%20cancer%20(LABC,metastasis%2C%20staging%20exams%20are%20necessary.
Please let us know if we can help you.

HUGS,

D.

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Thank you very much Dee for your response. I have read the article you included and found it very informative. I have had a CT scan and fortunately nothing else showed up on it. I am however now considering getting radiation treatment. I am seeing the various specialist in the new year. Thanks again and wishing you a very good year ahead. Ginny😀🙏

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@ginny100

Thank you very much Dee for your response. I have read the article you included and found it very informative. I have had a CT scan and fortunately nothing else showed up on it. I am however now considering getting radiation treatment. I am seeing the various specialist in the new year. Thanks again and wishing you a very good year ahead. Ginny😀🙏

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@ginny100 - Hello, dear Ginny; I am glad I could be of some help. I have a couple of questions: What areas of your body were scanned by the CT? Are you being seen in a Cancer Center?

I am happy you are being seen very soon by various specialists. As you may have read, LABC does require a multidisciplinary approach. I am happy you are considering getting Radiation treatment; however, I'd like to remind you that Chemotherapy is also a staple of LABC treatment, so I encourage you to ask the oncologist as many questions as you need to evaluate what the various doctors are recommending. Your doctor may tell you that there may not be real choices. The protocol involves 3 types of treatment - Surgery (if possible or useful), Chemo, and Radiation. You can request second and third opinions, but please don't wait.

Let me tell you about my own experience and how I handled things that I did NOT want to do:

I understand how hard it is to accept chemo and radiation. Initially, I refused radiation. I didn't want it at all. Period.

My family and the doctors involved in my care were surprised I did. You know what? I was, too! I realized much later that it was my way to regain control over my life. And I was VERY ANGRY ... After three weeks, I decided I needed to be more reasonable and rely upon the "numbers". So, I waited for the results of the surgical pathology and the DCISionRT Score (Probability of Reoccurrence in time). So, I established a threshold - I picked 20%. What that meant was if the surgical pathology showed invasive cancer or if the DCISionRT Score showed a reoccurrence of around 15% (I was accounting for a margin of error of about 5%), I would do the Radiation treatment.

My surgical pathology report did NOT show Invasive cancer; however, it showed my cancer was high grade, AND some of my tissue did NOT have clear margins. I talked to the surgeon. My choices were a mastectomy or Radiation treatment. Then, the DCISionRT Score came in, showing I was at an "elevated" level (15%) for reoccurrence without radiation treatment.
At that point, I gave my OK to radiation therapy.

Ginny, the above is only my story. But it should show that while we are all different, we all may have doubts, questions, and anxieties.

Please let me know what you think. In the meantime, I hope the new year will bring you great love, peace, and health.

HUGS,

Dee

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@danielad

@ginny100 - Hello, dear Ginny; I am glad I could be of some help. I have a couple of questions: What areas of your body were scanned by the CT? Are you being seen in a Cancer Center?

I am happy you are being seen very soon by various specialists. As you may have read, LABC does require a multidisciplinary approach. I am happy you are considering getting Radiation treatment; however, I'd like to remind you that Chemotherapy is also a staple of LABC treatment, so I encourage you to ask the oncologist as many questions as you need to evaluate what the various doctors are recommending. Your doctor may tell you that there may not be real choices. The protocol involves 3 types of treatment - Surgery (if possible or useful), Chemo, and Radiation. You can request second and third opinions, but please don't wait.

Let me tell you about my own experience and how I handled things that I did NOT want to do:

I understand how hard it is to accept chemo and radiation. Initially, I refused radiation. I didn't want it at all. Period.

My family and the doctors involved in my care were surprised I did. You know what? I was, too! I realized much later that it was my way to regain control over my life. And I was VERY ANGRY ... After three weeks, I decided I needed to be more reasonable and rely upon the "numbers". So, I waited for the results of the surgical pathology and the DCISionRT Score (Probability of Reoccurrence in time). So, I established a threshold - I picked 20%. What that meant was if the surgical pathology showed invasive cancer or if the DCISionRT Score showed a reoccurrence of around 15% (I was accounting for a margin of error of about 5%), I would do the Radiation treatment.

My surgical pathology report did NOT show Invasive cancer; however, it showed my cancer was high grade, AND some of my tissue did NOT have clear margins. I talked to the surgeon. My choices were a mastectomy or Radiation treatment. Then, the DCISionRT Score came in, showing I was at an "elevated" level (15%) for reoccurrence without radiation treatment.
At that point, I gave my OK to radiation therapy.

Ginny, the above is only my story. But it should show that while we are all different, we all may have doubts, questions, and anxieties.

Please let me know what you think. In the meantime, I hope the new year will bring you great love, peace, and health.

HUGS,

Dee

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Thanks Dee, How did the radiation therapy go? Did it clear your cancer? How long did it take? How did you feel during it? Thanks again. Ginny.

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@ginny100 - The Radiation treatment is pretty standard for breast cancer; however, I don't know how it works when the cancer returns as a Locally Advanced Breast Cancer, which has spread to the skin. It depends on several other factors, including the grade level, stage, etc. Did the doctors recommend surgery before radiation and chemo? Do you have any additional information from your Pathology report, including the cancer stage, you would like to share?

In terms of radiation treatments for breast cancer - In general terms, the treatment involves the use of an External Beam and varies between 3 and 6 weeks. Mine was 6 weeks, and I had some side effects.

Radiation can be hard on the skin. I used CeraVe' cream several times a day and continued putting it on every few minutes! Doing so helped greatly, and I avoided most burns that way! I experienced fatigue (a very normal reaction), as well as nausea and mental fog. These last two are rare, but I experienced both. The doctor gave me medication for nausea, and that worked well. Side effects can develop during or following the treatment; however, they are temporary. Mine developed during the treatment, and some stayed with me for a few months.

In my case, yes, the radiation treatments were deemed enough. However, I go every 6 mos for regular checkups and/or testing (Breast MRI or Diagnostic Mammogram). In your case, since you now have Locally Advanced Breast Cancer, the care, as I mentioned, generally includes all 3 types of treatment - Surgery (if possible), Chemotherapy, and Radiation Therapy. You mentioned the doctors recommended Radiation and Chemotherapy. Did they not talk to you about surgery?

Ginny, I know it is not what you want to do, but I do recommend you listen to your doctors. If you are not sure, get different opinions. And in the meantime, if you can share other particulars of the Pathology Report, we can support you better.

A big HUG!

Dee

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I asked my oncologist why I didn't have more lymph nodes removed when it was found in 3 of them. He said
that chemo took the place of that. Edema in the arm is such a common thing they wanted to prevent that surgery by using chemo instead of removing more. nodes. I'm 82 now I had a lumectomy and radiation also. I was 79 when my year of treatment started.

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