Thank you so much for the reply.
My endocrinologist wanted me to stay on HRT, he doesn't think it caused the cancer.
Everyone else thinks it did.
Hence a search for a new one- difficulty in getting in. Am going to ask oncologist for a recommendation as my PCP couldn't get me into the one he knew.
My next Dexa is in August. My last Dexa was osteopenia which was an upgrade from previous osteoporosis. The hormones and collagen helped my bones, now I read not to take either 🙁
Such a shift in life and mixed information!
But thank you for your insight.
🙂
@flowergal - I replied to you 4 days ago; unfortunately, my reply seems to have vanished! I don't know the reason, so it is very frustrating!
I wonder why your previous endocrinologist believes you should continue HRT (aside from the potential support for bone health)? Were the numbers very low? I know some doctors consider low estrogen receptors not much of a risk; however, I would err on the side of caution, as your other doctors are. This is for the type of Estrogen you would take systemically (such as HRT); in other words, affecting your entire body, not as a localized cream.
I stopped taking HRT immediately - I was ER and PR Positive >90%. The last DEXA (May 2022) showed I went from Osteopenia to Osteoporosis. So, my endocrinologist prescribed Reclast (infusion), one of the bisphosphonate medications that slow down bone loss and improve bone mass. My first infusion was in Nov 2022. Following a DEXA scan in May 2024, I am supposed to have another Reclast infusion.
@flowergal - I replied to you 4 days ago; unfortunately, my reply seems to have vanished! I don't know the reason, so it is very frustrating!
I wonder why your previous endocrinologist believes you should continue HRT (aside from the potential support for bone health)? Were the numbers very low? I know some doctors consider low estrogen receptors not much of a risk; however, I would err on the side of caution, as your other doctors are. This is for the type of Estrogen you would take systemically (such as HRT); in other words, affecting your entire body, not as a localized cream.
I stopped taking HRT immediately - I was ER and PR Positive >90%. The last DEXA (May 2022) showed I went from Osteopenia to Osteoporosis. So, my endocrinologist prescribed Reclast (infusion), one of the bisphosphonate medications that slow down bone loss and improve bone mass. My first infusion was in Nov 2022. Following a DEXA scan in May 2024, I am supposed to have another Reclast infusion.
He believes the low dose cream helps the brain and bones. I have a family history on both sides of broken hips =death.
ER + 15%
The DCIS in Situ were calcifications. Stage 0 grade 3.
When I started seeing him it was because of Chronic tick disease that ultimately led to hypothyroidism and low cortisol. He is still treating me for that. He is adamant women need hormones, low dose bio identical. I guess I gambled and lost. But they certainly helped my brain and bones.
My next scan is in August, will see how it goes.
I just visited the oncologist to check up on the Anastrozole. So far lots of night sweats and a little stiffness. Still early though -
Thank you for the response.
He believes the low dose cream helps the brain and bones. I have a family history on both sides of broken hips =death.
ER + 15%
The DCIS in Situ were calcifications. Stage 0 grade 3.
When I started seeing him it was because of Chronic tick disease that ultimately led to hypothyroidism and low cortisol. He is still treating me for that. He is adamant women need hormones, low dose bio identical. I guess I gambled and lost. But they certainly helped my brain and bones.
My next scan is in August, will see how it goes.
I just visited the oncologist to check up on the Anastrozole. So far lots of night sweats and a little stiffness. Still early though -
Thank you for the response.
@flowergal - Thanks for the information. Yes, he is right: Estrogen IS a helpful hormone for the brain and bones, even in males. However, there are certain situations when estrogen and progesterone are not appropriate. One of these is having a cancer that shows it is receptive to these hormones - As it is in your, mine, and many others. That means our type of cancer uses estrogen to grow and develop.
In your case, 15% is pretty low; some doctors will argue that the level is so low that it is not worth stopping HRT and possibly cause issues with the bones and brain. Your endocrinologist is one of them. However, you have a grade 3 type of cancer. This means it is a faster-growing cancer and more likely to spread. Oncologists are less apt to take any chances when the cancer grade is 2-3. Have you discussed this in-depth with your oncologist?
Did you have radiation? In my decision-making, I used PreludeDX. https://preludedx.com/patients/?gad_source=1&gclid=EAIaIQobChMIjsGp0ZrTgwMVMmFHAR12NQDvEAAYASADEgIsz_D_BwE
"DCISionRT is a risk assessment test for patients with ductal carcinoma in situ (DCIS). The test was developed by PreludeDx and built on research that began with funding from the National Cancer Institute to better understand the biology of DCIS. DCISionRT assesses a patient’s individual biology along with other risk factors to provide a personalized assessment that predicts the risk of your DCIS coming back (recurring) over the next 10 years. The test calculates a personalized recurrence score and identifies your risk as low or elevated. DCISionRT provides information that may help you and your physician make a more informed treatment decision. "
My insurance covered it, so I didn't pay for it. Based on the results shown, my oncologists recommended Radiation and Aromatase Inhibitors. I decided to get the radiation; however, I chose not to take AIs.
@flowergal - Thanks for the information. Yes, he is right: Estrogen IS a helpful hormone for the brain and bones, even in males. However, there are certain situations when estrogen and progesterone are not appropriate. One of these is having a cancer that shows it is receptive to these hormones - As it is in your, mine, and many others. That means our type of cancer uses estrogen to grow and develop.
In your case, 15% is pretty low; some doctors will argue that the level is so low that it is not worth stopping HRT and possibly cause issues with the bones and brain. Your endocrinologist is one of them. However, you have a grade 3 type of cancer. This means it is a faster-growing cancer and more likely to spread. Oncologists are less apt to take any chances when the cancer grade is 2-3. Have you discussed this in-depth with your oncologist?
Did you have radiation? In my decision-making, I used PreludeDX. https://preludedx.com/patients/?gad_source=1&gclid=EAIaIQobChMIjsGp0ZrTgwMVMmFHAR12NQDvEAAYASADEgIsz_D_BwE
"DCISionRT is a risk assessment test for patients with ductal carcinoma in situ (DCIS). The test was developed by PreludeDx and built on research that began with funding from the National Cancer Institute to better understand the biology of DCIS. DCISionRT assesses a patient’s individual biology along with other risk factors to provide a personalized assessment that predicts the risk of your DCIS coming back (recurring) over the next 10 years. The test calculates a personalized recurrence score and identifies your risk as low or elevated. DCISionRT provides information that may help you and your physician make a more informed treatment decision. "
My insurance covered it, so I didn't pay for it. Based on the results shown, my oncologists recommended Radiation and Aromatase Inhibitors. I decided to get the radiation; however, I chose not to take AIs.
Hi, thank you for this reply, it is so helpful.
Yes I had 4 weeks of radiation with boost treatments at the end. The doctor did recommend AI which I've only been on for six weeks. Not sure how it will go, or how long I will be on them .
In retrospect if I knew them what I know now, I would have had a DMX and not had to worry about these AI side effects. I just thought stage 0 DCIS was an early catch and per mds would be fine.
I did take a test CTS 5 test meant for after 5 years AI treatment (obviously I just started AI) to assess reoccurrence 6% intermediate risk.
The Predict test excludes DCIS patients as you know, but I took it anyway.
You are right, the grade 3 of the 14 mm tumor puts me at a higher risk.
No one has a crystal ball but I sure would like to take the test you listed to really understand the risk.
I'm 68 my mom died at 74, I want to live my last years feeling good enough to watch my grandkids like I was and am doing.
I than God for this group as you all understand the unpredictable nature of our personal risk of reoccurrence.
Yes I did talk in depth with oncologist, who assures me we try this drug first, if problems occur, we try another.
Thank you again for listening and responding with pertinent information.
I wonder if I should still take the test above, even now after treatment (?)
I also had dcis insitu and just completed lumpectomy. Meet with oncologist next week but for same reason as you, will not be doing radiation and probably not hormone treatment either. Thanks for sharing. Makes me feel I am not alone in this decision.
Hi friends, I’m scheduled for a lumpectomy on 2/1. The surgeon was very optimistic that she could get good margins because of the size and location of area to be removed near nipple. I’m trying to stay upbeat.
I had Invasive Lobular Carcinoma and DCIS diagnosed Jan 2023 followed by lumpectomy, sentinel lymph node removal, 16 radiation treatments and am now on 1mg Anastrozole (Estrogen/progesterone +) for 5 years. All healed up and no side effects(other than mild hot flashes controlled by dressing in layers!). Drink lots of water and exercise daily- tai chi, zumba, weight machines, bike, dog walk. Feeling positive!
I was just diagnosed with DCIS in right breast intermediate stage. My consultation with surgeon is a month away and my MRI next week. I’m feeling alone and wish I could talk to someone about what the MRI might show. Am I waiting too long before surgeon consult? My primary doctor didn’t call me back today. Feeling horrible.
My experience is that when a scan is done, like MRI, the surgeon reviews it, and then it’s reviewed by anyone on your medical team who needs to discuss treatment options. Usually takes a minimum of 2 days, but it depends on how busy the surgical schedule is. Could be a week or more.
Here’s my timeline so you can compare how yours is going.
My local mammogram and follow up diagnostic and ultrasound were on April 21 & 29, 2022.
Radiology gave it a BIRADS 3 and said to come back in 6 months for another mammogram.
By June the uncertainty was bothering me. I talked with the radiologist 6/7 and they ordered a biopsy 6/10.
It came back DCIS intermediate grade, ER+PR+. This was all done in the Austin area.
I contacted MD Anderson on 6/17, and had an MRI and saw the surgical oncologist on 6/27-28.
There was some delay getting surgery scheduled to get all my records in place in the new location and facility. They offered a surgery date 8/15 - but I asked if I could change that because it meant traveling in for a Friday prep and surgery on Monday. I really didn’t want to have to hang around Houston for the weekend, besides the cost of a hotel.
Surgery was on 8/30.
Saw the radiation oncologist on 10/28 to plan tx, radiation was 10/17-10/21.
My understanding is that low grade DCIS takes about 9 years to grow from a cell to a lesion large enough to scan. Intermediate grade takes 6 years and high grade 4 years. Of course there are variables that affect that timeline. But I wasn’t too worried about waiting. My DCIS was under 2 cm at surgery, so it had not grown very fast.
My experience is that when a scan is done, like MRI, the surgeon reviews it, and then it’s reviewed by anyone on your medical team who needs to discuss treatment options. Usually takes a minimum of 2 days, but it depends on how busy the surgical schedule is. Could be a week or more.
Here’s my timeline so you can compare how yours is going.
My local mammogram and follow up diagnostic and ultrasound were on April 21 & 29, 2022.
Radiology gave it a BIRADS 3 and said to come back in 6 months for another mammogram.
By June the uncertainty was bothering me. I talked with the radiologist 6/7 and they ordered a biopsy 6/10.
It came back DCIS intermediate grade, ER+PR+. This was all done in the Austin area.
I contacted MD Anderson on 6/17, and had an MRI and saw the surgical oncologist on 6/27-28.
There was some delay getting surgery scheduled to get all my records in place in the new location and facility. They offered a surgery date 8/15 - but I asked if I could change that because it meant traveling in for a Friday prep and surgery on Monday. I really didn’t want to have to hang around Houston for the weekend, besides the cost of a hotel.
Surgery was on 8/30.
Saw the radiation oncologist on 10/28 to plan tx, radiation was 10/17-10/21.
My understanding is that low grade DCIS takes about 9 years to grow from a cell to a lesion large enough to scan. Intermediate grade takes 6 years and high grade 4 years. Of course there are variables that affect that timeline. But I wasn’t too worried about waiting. My DCIS was under 2 cm at surgery, so it had not grown very fast.
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@flowergal - I replied to you 4 days ago; unfortunately, my reply seems to have vanished! I don't know the reason, so it is very frustrating!
I wonder why your previous endocrinologist believes you should continue HRT (aside from the potential support for bone health)? Were the numbers very low? I know some doctors consider low estrogen receptors not much of a risk; however, I would err on the side of caution, as your other doctors are. This is for the type of Estrogen you would take systemically (such as HRT); in other words, affecting your entire body, not as a localized cream.
I stopped taking HRT immediately - I was ER and PR Positive >90%. The last DEXA (May 2022) showed I went from Osteopenia to Osteoporosis. So, my endocrinologist prescribed Reclast (infusion), one of the bisphosphonate medications that slow down bone loss and improve bone mass. My first infusion was in Nov 2022. Following a DEXA scan in May 2024, I am supposed to have another Reclast infusion.
HUGS!
D.
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Helpful -
Hug
2 ReactionsHe believes the low dose cream helps the brain and bones. I have a family history on both sides of broken hips =death.
ER + 15%
The DCIS in Situ were calcifications. Stage 0 grade 3.
When I started seeing him it was because of Chronic tick disease that ultimately led to hypothyroidism and low cortisol. He is still treating me for that. He is adamant women need hormones, low dose bio identical. I guess I gambled and lost. But they certainly helped my brain and bones.
My next scan is in August, will see how it goes.
I just visited the oncologist to check up on the Anastrozole. So far lots of night sweats and a little stiffness. Still early though -
Thank you for the response.
-
Like -
Helpful -
Hug
2 Reactions@flowergal - Thanks for the information. Yes, he is right: Estrogen IS a helpful hormone for the brain and bones, even in males. However, there are certain situations when estrogen and progesterone are not appropriate. One of these is having a cancer that shows it is receptive to these hormones - As it is in your, mine, and many others. That means our type of cancer uses estrogen to grow and develop.
In your case, 15% is pretty low; some doctors will argue that the level is so low that it is not worth stopping HRT and possibly cause issues with the bones and brain. Your endocrinologist is one of them. However, you have a grade 3 type of cancer. This means it is a faster-growing cancer and more likely to spread. Oncologists are less apt to take any chances when the cancer grade is 2-3. Have you discussed this in-depth with your oncologist?
Did you have radiation? In my decision-making, I used PreludeDX.
https://preludedx.com/patients/?gad_source=1&gclid=EAIaIQobChMIjsGp0ZrTgwMVMmFHAR12NQDvEAAYASADEgIsz_D_BwE
"DCISionRT is a risk assessment test for patients with ductal carcinoma in situ (DCIS). The test was developed by PreludeDx and built on research that began with funding from the National Cancer Institute to better understand the biology of DCIS. DCISionRT assesses a patient’s individual biology along with other risk factors to provide a personalized assessment that predicts the risk of your DCIS coming back (recurring) over the next 10 years. The test calculates a personalized recurrence score and identifies your risk as low or elevated. DCISionRT provides information that may help you and your physician make a more informed treatment decision. "
My insurance covered it, so I didn't pay for it. Based on the results shown, my oncologists recommended Radiation and Aromatase Inhibitors. I decided to get the radiation; however, I chose not to take AIs.
HUGS,
D.
-
Like -
Helpful -
Hug
1 ReactionHi, thank you for this reply, it is so helpful.
Yes I had 4 weeks of radiation with boost treatments at the end. The doctor did recommend AI which I've only been on for six weeks. Not sure how it will go, or how long I will be on them .
In retrospect if I knew them what I know now, I would have had a DMX and not had to worry about these AI side effects. I just thought stage 0 DCIS was an early catch and per mds would be fine.
I did take a test CTS 5 test meant for after 5 years AI treatment (obviously I just started AI) to assess reoccurrence 6% intermediate risk.
The Predict test excludes DCIS patients as you know, but I took it anyway.
You are right, the grade 3 of the 14 mm tumor puts me at a higher risk.
No one has a crystal ball but I sure would like to take the test you listed to really understand the risk.
I'm 68 my mom died at 74, I want to live my last years feeling good enough to watch my grandkids like I was and am doing.
I than God for this group as you all understand the unpredictable nature of our personal risk of reoccurrence.
Yes I did talk in depth with oncologist, who assures me we try this drug first, if problems occur, we try another.
Thank you again for listening and responding with pertinent information.
I wonder if I should still take the test above, even now after treatment (?)
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7 Reactions@ema1 You are in my thoughts today and pray you are doing well.
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2 ReactionsThank you. Start radiation next week. Very nervous because it is left breast but moving forward. 21 days all will be done!!
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5 ReactionsHi friends, I’m scheduled for a lumpectomy on 2/1. The surgeon was very optimistic that she could get good margins because of the size and location of area to be removed near nipple. I’m trying to stay upbeat.
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Hug
4 ReactionsHo
Is 1mg anastroxole a normal dose?
My experience is that when a scan is done, like MRI, the surgeon reviews it, and then it’s reviewed by anyone on your medical team who needs to discuss treatment options. Usually takes a minimum of 2 days, but it depends on how busy the surgical schedule is. Could be a week or more.
Here’s my timeline so you can compare how yours is going.
My local mammogram and follow up diagnostic and ultrasound were on April 21 & 29, 2022.
Radiology gave it a BIRADS 3 and said to come back in 6 months for another mammogram.
By June the uncertainty was bothering me. I talked with the radiologist 6/7 and they ordered a biopsy 6/10.
It came back DCIS intermediate grade, ER+PR+. This was all done in the Austin area.
I contacted MD Anderson on 6/17, and had an MRI and saw the surgical oncologist on 6/27-28.
There was some delay getting surgery scheduled to get all my records in place in the new location and facility. They offered a surgery date 8/15 - but I asked if I could change that because it meant traveling in for a Friday prep and surgery on Monday. I really didn’t want to have to hang around Houston for the weekend, besides the cost of a hotel.
Surgery was on 8/30.
Saw the radiation oncologist on 10/28 to plan tx, radiation was 10/17-10/21.
My understanding is that low grade DCIS takes about 9 years to grow from a cell to a lesion large enough to scan. Intermediate grade takes 6 years and high grade 4 years. Of course there are variables that affect that timeline. But I wasn’t too worried about waiting. My DCIS was under 2 cm at surgery, so it had not grown very fast.
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Helpful -
Hug
5 ReactionsThanks for sharing! Really helpful….I was thinking that everything is urgent and needs to be done right away!!
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3 Reactions