Returning Member -- But New To This the Breast Cancer Group -- DCIS

Posted by Dee @danielad, Feb 11 12:10pm

@colleenyoung and others – I am back; I had a lot going on for the past several months, including the discovery I had Breast Cancer. Who, ME? Certainly NOT ME! Well … YES, ME! DCIS — right breast. I found it because I insisted on a “Diagnostic Mammogram” … And it was found. It was not palpable; I had no pain; no discharge; no signs of anything … I just had a “feeling”, not a category found on the sheet you are going to fill out prior to an annual mammogram! But the category that doesn’t exist (Feeling something is NOT right) allowed me to catch it at a very early stage. DCIS is the “better” type of breast cancer. If you MUST have breast cancer, well, this is the one to pick! OK .. This was meant to make you laugh!!!

I had a lumpectomy in the right breast, with breast reconstruction (both breasts). Should have been pretty easy; however, it has been a very difficult road for me — Yes, everyone IS different! I had a hematoma in the left breast; another 3-hrs surgery 36 hours after the first (6-hrs)… Lots of problems and pain … CT scan of the lungs … I requested the use of the latest tools and techniques during surgery and to discover my “risk”. I am in the higher range, as risk goes. The top margin was too close for comfort, and I had (have?) multiple cancerous sites.

Count me among those who have a strong fear or radiation, and initially, I did not want to do anything but another surgery. Couldn’t be done. No more tissue to take (according to the breast surgeon). I am categorized as a “unique patient” … I ask a lot of questions and want to plan things. GO FIGURE! Shouldn’t we all have that right? I think so! BUT be ready to become “the” patient people address as — “Oh, it’s you!” … I choose to think of it as an “endearing term”! Yes! It is ME!!

My medical Oncologist recommended I take one of three “Aromatase Inhibitors” — The pill you would take daily for 5 years, in order to “kill” your Estrogen and Progesterone — My cancer is 99+% receptive to both. By the way, that means I was feeding my type of cancer by taking HRT daily. Lovely news, but at least, I could do something — I stopped taking the pills immediately following the Mammogram … Just in case. And I was right to do so. But I refused the Aromatase Inhibitors; at least for now. I don’t see the great advantage of taking those pills after having stopped the HRT. Also, the side effects are really pretty bad for most people! I will ask for tests to measure my hormones, later on.

My Radiation Oncologist was very concerned because I was not at all prone to doing radiation therapy. I needed “facts” to make a decision. I didn’t want to damage my lungs and heart. Well, we had a very good and lengthy meeting — He explained everything and I made the decision to have radiation. Difficult decision, in part due to the fact that my husband’s first wife passed away from breast cancer. This has been VERY difficult for him! So … Today I go to get “mapped” and ready for the first session — Tomorrow, 12 Feb. I am truly dreading it!!!

Stay healthy! Dee

@danielad
You and I have had similar results — I had a large reservoir hematoma following my first lumpectomy which turned into a "honeycomb" type of hematoma which took about 4 times to drain. After the second surgery it wasn't too bad but them I had tubes for about 5 weeks which seemed to drain everything. I would tell you this about the aromatase inhibitors. You won't know what side effects you get until you try them – I was on anastrozole first which was rough and the letrozole which was rough but not quite as bad. However, have been on exemestane now for about 6+ months and not really having much pain with it. So everyone is different. You won't know unless you try it and they do appear to reduce the chances of recurrence. For my particular types of breast cancers, I need to be on them 10 years.

For your radiation therapy, the nurses should go over skin care with you. My radiation oncologist advised calendula cream which helps in healing. I have aloe plants at home but they said NO, NO, No to the plants as if there is any bacteria on them your burns can become infected but to purchase some without perfume, etc. If the burns get too rough — and they might not be a problem for you — they can prescribe a burn ointment (such as Silvadene) which really helps. I had to undergo 30 treatments and they had to also do the upper area as one of my lymph nodes eroded into the lymphatic system. Unfortunately, I also have bronchiectasis and for this reason a few months after radiation ended, I wound up with radiation pneumonits, but treatment took care of that.

I would advise you to keep in touch with your physical therapist if you should see any signs of your arm or breast swelling. I had some lymphedema of the arm and the PT worked on that and now have no problem. My breast did swell up which was lymphedema and she taught me self-massage which has helped greatly with the pain and brought the size down. Radiation can cause hardened ridges and the breast massage really helps with that. Since undergoing chemo, first surgery, second surgery, and radiation, it has been 18 months since I've been able to sleep in my bed and have been in the recliner – well, after doing all the breast massage I have been in my bed for the last 5 nights….so WONDERFUL to be in a soft cozy bed again.

I wish you all the best….never be afraid to ask questions and never be afraid to seek help for any problem you are having!

Liked by Dee, sparklegram

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@danielad
Great post, Dee, although I wish the circumstances could be different for you. Before you dismiss the AIs, however, you should be advised that women appear to remain at increased risk more than 10 years after they'd stopped taking HRT.
https://www.nhs.uk/news/cancer/study-suggests-hrt-carries-higher-risk-breast-cancer-thought/
It certainly came as a shock to me.

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@danielad, Oh it's YOU (said in an endearing tone and I mean it). I'm so glad to hear from you and I had wondered where you'd gone. However, I had never imagined that another cancer diagnosis is what kept you away. Oh my.

You sure seem to be rolling up your sleeves and taking the bull by the horns with research, questions and then more questions and a healthy dose of humor. Good for you for your persistence in getting the diagnosis and now carefully considering all your treatment options.

Like @elizm I encourage you to continue your research on aromatase inhibitors (AIs), including reading the multiple discussions in this group. Talk to your oncologist about your specific level of risk of recurrence. I'm not encouraging you to make a specific decision, just to make an informed decision based on you.

What changed your mind about radiation? How was the mapping? All the best for tomorrow's zapping.

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Hi @colleenyoung. Thank you for your words! I will reply to you message later today. Just to briefly explain — As you may remember, after the passing of my friend Dina, I felt pretty depressed. I needed space and time to nurse myself back to health and did come out of it, eventually. But I didn't feel "healthy" enough and "strong" enough to get back on "Connect". Then the diagnosis … And it suddenly hit me — I can be of help to others, and I can gain support and information while doing so! I am BLESSED in many ways — I saved myself because I found my Melanoma, now again, I saved myself because I found the Breast Cancer … Maybe again because, due to the hematoma, I had a CT of the lungs, and they found a "nodule" in my Right Lung. So now I am being followed for the Melanoma, Breast Cancer, and Lung Nodule (not better identified at this point).

I really feel BLESSED. Everything was/is at a VERY EARLY stage. Therefore, in spite of all the problems I have encountered, I feel very positive and absolutely optimistic about what comes next.

Must run off, have to see my surgeon (my left breast is NOT healed yet!!). Then I have my FIRST Radiation Treatment … and that makes me very anxious, no turning back after today!

Thanks again Colleen! Dee

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@danielad

Hi @colleenyoung. Thank you for your words! I will reply to you message later today. Just to briefly explain — As you may remember, after the passing of my friend Dina, I felt pretty depressed. I needed space and time to nurse myself back to health and did come out of it, eventually. But I didn't feel "healthy" enough and "strong" enough to get back on "Connect". Then the diagnosis … And it suddenly hit me — I can be of help to others, and I can gain support and information while doing so! I am BLESSED in many ways — I saved myself because I found my Melanoma, now again, I saved myself because I found the Breast Cancer … Maybe again because, due to the hematoma, I had a CT of the lungs, and they found a "nodule" in my Right Lung. So now I am being followed for the Melanoma, Breast Cancer, and Lung Nodule (not better identified at this point).

I really feel BLESSED. Everything was/is at a VERY EARLY stage. Therefore, in spite of all the problems I have encountered, I feel very positive and absolutely optimistic about what comes next.

Must run off, have to see my surgeon (my left breast is NOT healed yet!!). Then I have my FIRST Radiation Treatment … and that makes me very anxious, no turning back after today!

Thanks again Colleen! Dee

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@danielad Hi Dee,

Welcome back to Connect! What a remarkable outlook you have. I'm sure you will be of help to others as you are willing to share your experiences with them. How fortunate that your cancers were found at early stages, as was mine. That is much to be grateful for.

I look forward to reading your updates as you continue on your journey of health!

Liked by Dee, trixie1313

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@elizm

@danielad
Great post, Dee, although I wish the circumstances could be different for you. Before you dismiss the AIs, however, you should be advised that women appear to remain at increased risk more than 10 years after they'd stopped taking HRT.
https://www.nhs.uk/news/cancer/study-suggests-hrt-carries-higher-risk-breast-cancer-thought/
It certainly came as a shock to me.

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Hi @elizm, thanks for your words and information regarding HRT and its potential long-term risk. I read the article you sent me; however, I wonder what the 10+ years increased risk for breast cancer is due to. It cannot be the amounts of estrogen and progesterone still in the body, as there would not be anything left after a short period of time from stopping HRT. So I wonder what else could be at play? Why would the HRT potentially present a 10+ years increased risk? Do you know?

Thanks — Dee

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@danielad
Hi, Dee. From what I understand for postmenopausal women, most of our estrogen is produced by body fat, although at lower levels than what our pre-menopausal ovaries produced, and by our adrenal glands. Here's a related article which may be of interest to you:
https://www.breastcancer.org/research-news/total-body-fat-affects-risk-more-than-belly-fat

Liked by Dee, trixie1313

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@elizm

@danielad
Hi, Dee. From what I understand for postmenopausal women, most of our estrogen is produced by body fat, although at lower levels than what our pre-menopausal ovaries produced, and by our adrenal glands. Here's a related article which may be of interest to you:
https://www.breastcancer.org/research-news/total-body-fat-affects-risk-more-than-belly-fat

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@danielad (Part 2)
Regrettably, the second half of my response went haywire with the website… so let's try it, again.

As to why the risk of invasive breast cancer and ER+ disease are higher over time for those who took HRT versus never-users, for example, is not clear to me. Recently, researchers looked at a tremendous number of data and found a strong correlation, especially dependent on duration of use and excess weight (BMI).
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)31709-X/fulltext
Now that the correlation has been found, perhaps the researchers will look more closely for the mechanism/s at work in all this (and it may well lie in our body fat and that enzyme aromatase?).

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@elizm – Happy Valentine's Day! Thanks for the information in BOTH posts. I am on my way to do "Radiation #3", so I will read the info when I get back. Thanks again!!!
–Dee

Liked by trixie1313

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