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question about hormone receptor
Hi everyone. I have a question and this may be stupid. I am three weeks post op bi-lat mas. Was looking at my path report tonight because my margins came back unclear on my left side and now I'm being told I should do chemo and radiation. Just happened to notice my right side was noted as being ER+PR+ but my left side is ER+PR-. Is that normal? Any thoughts on this? Has anyone else run across this? I thought it was odd. Thanks for any answers, I hope this isn't a retarded question.
I started in January 7, 2008, 4 rounds a/c chemo, mastectomy 3/26/08, 1 round taxotere chemo, allergic reaction, 3 rounds carboplatin/gemzar chemo for mets. Started rads 8/6/008 and ended 9/25/08 (I think) and 6 of those treatments were boosts. Port removed 9/30/08. First gyne appt 10/30/08 found lump on remaining breast, here we go again, right? I've had CT scans, PET scans, MRI's, mammograms and ultrasounds. I finally chose a prophylactic mastectomy of left breast (there were two masses in it at the time of removal, clean pathology!) to REDUCE THE RISK of ever hearing you have a lump or you have breast cancer, again. I had DIEP perforator flap reconstruction 5/5/09 on both breasts and actually like them. It takes the fat and skin and blood vessels from my stomach and they made two breasts out of them, re-connecting the blood supply from the flaps to my chest area. They are healthy and I am happy. I get nips next month! I went to the Breast Center for Restorative Surgery in New Orleans, with Dr. Dellacroce and his team. Well worth the plane ticket to get this done by a microsurgeon plastic surgeon who's done a couple hundred of these a year for the last 10 years! Dr. Craigie and his team do a wonderful job out of North Carolina. Dr. Alan Levine and his team does a wonderful job out of NY and New Orleans.
You are pretty young to have breast cancer. Have you considered getting BRCA testing for genetic mutation? There are hereditary cancers without mutations and then BRCA 1 & 2 mutations which increase your risk into the 85 to 87% range for breast and ovarian cancers. There are BRCA savvy genetic counselors out there that can answer all kinds of questions for you that you didn't know to ask, and help you find the resources you need, whether this is a hereditary cancer or genetic mutation. I had it done and was BRCA negative, but have family hereditary cancer, ovarian, breast, melanoma, lymphoma, non hodgkins lymphoma, colon... yada yada yada. I know my risk is there.
Where the BRCA testing is extremely helpful is as a cancer patient, knowing your status with this may change some of the treatment options and surveillance options. Also, there are a lot of studies going on for these younger ladies and gentlemen with the mutations. Your sisters, brothers, children and someday, grandchildren could carry this and be born with the higher risk and not know that they should start mammograms much earlier than the general population.
Yes, I'm on tamoxifen. I don't like it but I don't have much choice. I can't turn my back on an estrogen positive cancer as even though I've been through chemo and radiation and tamoxifen, I am STILL peri-menopausal. I haven't had a period since last March, 2008. Blood FHS levels show I am not menopausal. So, as much as I dislike the drug, for me it's the best option of what's available. The other drugs would cripple me since that's my weak point as shown by how the chemo affected me. None of this is pleasant, but it IS doable. I'm surviving and thriving! I just can't remember some stuff that I can't remember! See what I mean? LOL
You're going to be fine. Really think about getting a second opinion. Maybe a PET scan too to see if they can see anything that could be cause for concern. Fight the Fight woman! We're here for you :)
You are pretty young to have breast cancer. Have you considered getting BRCA testing for genetic mutation? There are hereditary cancers without mutations and then BRCA 1 & 2 mutations which increase your risk into the 85 to 87% range for breast and ovarian cancers. There are BRCA savvy genetic counselors out there that can answer all kinds of questions for you that you didn't know to ask, and help you find the resources you need, whether this is a hereditary cancer or genetic mutation. I had it done and was BRCA negative, but have family hereditary cancer, ovarian, breast, melanoma, lymphoma, non hodgkins lymphoma, colon... yada yada yada. I know my risk is there.
Where the BRCA testing is extremely helpful is as a cancer patient, knowing your status with this may change some of the treatment options and surveillance options. Also, there are a lot of studies going on for these younger ladies and gentlemen with the mutations. Your sisters, brothers, children and someday, grandchildren could carry this and be born with the higher risk and not know that they should start mammograms much earlier than the general population.
Yes, I'm on tamoxifen. I don't like it but I don't have much choice. I can't turn my back on an estrogen positive cancer as even though I've been through chemo and radiation and tamoxifen, I am STILL peri-menopausal. I haven't had a period since last March, 2008. Blood FHS levels show I am not menopausal. So, as much as I dislike the drug, for me it's the best option of what's available. The other drugs would cripple me since that's my weak point as shown by how the chemo affected me. None of this is pleasant, but it IS doable. I'm surviving and thriving! I just can't remember some stuff that I can't remember! See what I mean? LOL
You're going to be fine. Really think about getting a second opinion. Maybe a PET scan too to see if they can see anything that could be cause for concern. Fight the Fight woman! We're here for you :)
Wow, Sue, you ARE a fighter! I had stage 1, no lymph nodes and the largest tumor was 1.2 cm. It was just in a crappy spot, but if it hadn't have been there, I probably wouldn't have found it. I thought I was being aggressive by having the mastectomy, but now this. But I'm soooooo scared of radiation. I'm 44 and don't want to survive this to find out I've developed a different health issue because of a cancer treatment. If they were to say to me 'just do 5 or 10 sessions to knock out what might be there' I'd do it. But 28 seems excessive especially since they can't tell me for sure if it's there or where it is. And they said there isn't any way to check after to see if it's gone. I've also heard Tamoxifen has nasty side effects and risks as well. How long ago did you go through all of this?
I hear you on that, and of course, radiation can cause issues with anything in it's path, including the heart. Only you can decide what you can live with. I do understand your concern. I've been down the same path. Cancer *****!
Ovary removal removes part of the estrogen production but then you still have your adrenals producing estrogen too. I do not believe it negates the need for Tamoxifen or drugs like it. However, it does decrease the chance for ovarian cancer! That's a good thing :) I don't know your age range but if you are relatively youngish... 30's or early 40's I would think twice about removing ovaries because that can cause issues too and you don't need anymore issues. If you are youngish like that with invasive breast cancer please check into BRCA testing for yourself to see if you have a mutation that is genetic.
I did do the chemo and rads. I had stage 3, 2 lymph nodes involved, 10 cm invasive lobular carcinoma. They went into my chest muscle and took half of that trying to get clear margins. I went into fight mode upon diagnosis. I let them hit it with everything they had because I was in trouble either way, right? Only time will tell.
What to do... which to choose... I am sorry you have to deal with this. Best wishes :)
Ovary removal removes part of the estrogen production but then you still have your adrenals producing estrogen too. I do not believe it negates the need for Tamoxifen or drugs like it. However, it does decrease the chance for ovarian cancer! That's a good thing :) I don't know your age range but if you are relatively youngish... 30's or early 40's I would think twice about removing ovaries because that can cause issues too and you don't need anymore issues. If you are youngish like that with invasive breast cancer please check into BRCA testing for yourself to see if you have a mutation that is genetic.
I did do the chemo and rads. I had stage 3, 2 lymph nodes involved, 10 cm invasive lobular carcinoma. They went into my chest muscle and took half of that trying to get clear margins. I went into fight mode upon diagnosis. I let them hit it with everything they had because I was in trouble either way, right? Only time will tell.
What to do... which to choose... I am sorry you have to deal with this. Best wishes :)
Hi again, Sue. You were kind enough to answer a different question I posted about radiation after mastectomy. Thank you for being there.
Yes. My cancer was HER2 neg. Invasive ductal carcinoma. Do you know if ovary removal negates the need for Tamoxifen?
And I'm still trying to decide what to do about the radiation thing. Waiting for the ONCA score to come back. Very leary about radiation. The part of my breast tissue that came back without clear margins was on my inner left breast - so close to the heart. Am not seeing good things about that and am worried the radiation will cause heart problems in the future. (had enough broken hearts my whole life and survived them... don't want to be done in by radiation!)
Yes. My cancer was HER2 neg. Invasive ductal carcinoma. Do you know if ovary removal negates the need for Tamoxifen?
And I'm still trying to decide what to do about the radiation thing. Waiting for the ONCA score to come back. Very leary about radiation. The part of my breast tissue that came back without clear margins was on my inner left breast - so close to the heart. Am not seeing good things about that and am worried the radiation will cause heart problems in the future. (had enough broken hearts my whole life and survived them... don't want to be done in by radiation!)
It's absolutely not a retarded question! I'm sorry you've got BC.
Yes, you can have different pathologies and even different cancers!
It means that the estrogen that is naturally produced in your body by your ovaries (if you still have them) and your adrenals are feeding the cancer, as is progesterone on one side. You will most likely end up on Tamoxifen after everything is said and done to block the estrogen production and to help stop any further hormone positive cancer.
What was your HER2neu? What type of cancer is it?
Please keep us updated on your journey. We'll help all we can :) Best wishes!
Yes, you can have different pathologies and even different cancers!
It means that the estrogen that is naturally produced in your body by your ovaries (if you still have them) and your adrenals are feeding the cancer, as is progesterone on one side. You will most likely end up on Tamoxifen after everything is said and done to block the estrogen production and to help stop any further hormone positive cancer.
What was your HER2neu? What type of cancer is it?
Please keep us updated on your journey. We'll help all we can :) Best wishes!
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