Stage 1, grade 1 and pre-menopausal
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Annice - no I didn't have BRCA testing although I did have a genetic counseling session. My insurance wouldn't cover the test unless under 45 at diagnosis absent family history (I was 49). Genetic counselor estimated my chances of having the gene at about 1%. I really wanted to know what my diagnosis meant for my 8 yo daughter, as well as my mother and sisters. I was told they now have a 2-3 time greater lifetime risk of BC than the general population (so 24-36%!). I can only hope that by the time my daughter is of an age to be concerned that this will be curable or preventable.
I did have a few risk factors - early menses (age 11), first child at age 41 (couldn't breastfeed but pumped for 6 weeks) and very low vitamin D. I was otherwise fit and healthy. Personally, because of the timing (my MO estimated it took about 8 years for my tumor to grow to 2.1cm) I believe it had something to do with lactation, perhaps because it happened for the first time at the grand old age of 41. OTOH I was on birth control pills for several years on and off. No one can tell me that screwing with hormones has nothing to do with BC.
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Hi all, I have been away at my brothers 50th birthday bash in the South of France, hence the silence! Had a blast.
VR I would love to see a youtube video of your consultation with your doc with the OCD!! I laughed so much reading your post! He sounds mad as a hatter!
Jen I agree I have my suspicions about birth control pills having a role in my cancer. The pharma companies who sell these drugs have played down all the risks for many years but they have actively reduced the doses of estrogen in the pills steadily over the years because of the risks. Hmm why would they do that if there were no risk concerns?!0 -
Annice... Why would I need YouTube... when I get flashbacks all the time???!!!!
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Glad you had a terrific celebration with your family!0 -
Annice glad you a had a great time at the bday bash
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annice How great to celebrate your brother's birthday in style - glad that you had fun!
Ditto for me on thinking that birth control pills contributed to my BC - I took them for 15 years. My daughter is 13 y/o, and when the time is right, I am thinking of telling her to avoid them.
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Regarding Birth Control pills, only took them 2 months and that was 20+ years ago. Maybe my belly fat was my estrogen producer. I lost weight prior to my diagnosis. Its probably such a mix for each person.
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I agree Joyh1109 - I was on bc for 18 years and feel that they fed the cancer. I hope that my daughter avoids taking them and finds some other non-hormonal way.
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Tomof2-
I also was on bc for 18 years and totally convinced it contributed!!0 -
I too will be warning my (now 8 yo) daughter to stay away from any type of hormonal birth control.
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I was on bc for 10 years and wonder how much that caused a problem as well. And that ten years was before they started reducing the estrogen
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Had my first Zoladex injection this morning - woot! Strange that it makes me happy. I'm needle phobic and was worried about the process, but it was just not a big deal. DH was cowering in the corner, turned away - he thought the doctor was injecting a needle into an ovary! haha
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Esmerelda and everyone, I too am IDC Stage 1 (1.5cm) ER/PR+ 99%, HER@-. I don't have my onc score yet. Should have it this week. Not sure about chemo yet but anxious to know one way or another. I feel good with everything, have TEs in and had one inj with them so far. I am getting educated reading all your posts.
One question--how was the exchange surgery compared to double mast.? Did you have drains in for second surgery? And did you stay in hospital overnight? Somehow I have convinced myself that this second surgery will be a cake walk. ??? thoughts?
Kim0 -
Esmerelda and everyone, I too am IDC Stage 1 (1.5cm) ER/PR+ 99%, HER@-. I don't have my onc score yet. Should have it this week. Not sure about chemo yet but anxious to know one way or another. I feel good with everything, have TEs in and had one inj with them so far. I am getting educated reading all your posts.
One question--how was the exchange surgery compared to double mast.? Did you have drains in for second surgery? And did you stay in hospital overnight? Somehow I have convinced myself that this second surgery will be a cake walk. ??? thoughts?
Kim0 -
Yes do weigh in I am curious too!!!
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Hi Kim, exchange is much easier than mastectomy. A drain is usually needed. I had drain for my exchange. I had single mastectomy though. I was told I could have my exchange op as a day case and that would have been ok but I got a reaction to the anaesthetic so ended up in hospital overnight. Others can chime in but for me It is a walk in the park compared to mastectomy 😍. Good luck with your onc score, Annice
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Joy so glad the zoladex was a piece of cake! Happy hot flashing!
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Exchange was MUCH easier than mastectomy. I woke up with a smile. They asked me to rate my pain on a scale of 1-10, and I said zero. However, I had problems with my arms after BMX, and dh just reminded me that exchange brought that back temporarily. In spite of that, we were out walking along the beach 3 days post-op.
Good luck!
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kim exchange was really easy on me as well. I had bilateral and I did not have drains with the exchange. Very little pain, my biggest issue was I slept alot for two weeks after exchange. I had taken off work so it was not a big deal but if I had gone back to work early I would have been extremely tired. I was a bit surprised by that because I exercise alot.
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Keeping an eye out for local recurrence even after a mastectomy is still important. You are right about not constant survellance for metastatic cancer. Mitotic count is how fast the cells are dividing. Chemotherapy works on fast dividing cells and is the reason why cells on the digestive tract and hair are often targeted as well as cancer cells. Being young means more time for recurrences. Usually cancers are more aggressive but in your case, not so much.
Pubmed.com has a lot of information on these things. Even low risk, low scores, excellent profiles can come back as distant and/or local recurrences and why 100% isn't often found in any invasive breast cancers diagnosis. All of us live with this fact and hope that the percentages are in our favor. On the OTHER side of the coin, women with poor prognostic factors (except Stage 4 and even in that stage there are 20 year survivors) have been long term survivors. It's a matter of stats and our cancers are all individual. Ki67 is one of the major measures in the oncotypedx test, but not the only one. It is often referred to as the poor man's oncotypedx test. No ONE reading determines a treatment plan, but rather putting together the whole picture. Mitotic index is a very important one but as you can see, doesn't provide 100% accuracy either. I am glad you are reading and asking. "Ask anExpert" is a good place, John Hopkins University Breast Center..under that title....you can ask questions and the oncology nurse, with the help of oncologists, answers them.
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Keeping an eye out for local recurrence even after a mastectomy is still important. You are right about not constant survellance for metastatic cancer. Mitotic count is how fast the cells are dividing. Chemotherapy works on fast dividing cells and is the reason why cells on the digestive tract and hair are often targeted as well as cancer cells. Being young means more time for recurrences. Usually cancers are more aggressive but in your case, not so much.
Pubmed.com has a lot of information on these things. Even low risk, low scores, excellent profiles can come back as distant and/or local recurrences and why 100% isn't often found in any invasive breast cancers diagnosis. All of us live with this fact and hope that the percentages are in our favor. On the OTHER side of the coin, women with poor prognostic factors (except Stage 4 and even in that stage there are 20 year survivors) have been long term survivors. It's a matter of stats and our cancers are all individual. Ki67 is one of the major measures in the oncotypedx test, but not the only one. It is often referred to as the poor man's oncotypedx test. No ONE reading determines a treatment plan, but rather putting together the whole picture. Mitotic index is a very important one but as you can see, doesn't provide 100% accuracy either. I am glad you are reading and asking. "Ask anExpert" is a good place, John Hopkins University Breast Center..under that title....you can ask questions and the oncology nurse, with the help of oncologists, answers them.
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Blue pearl, yes the johns Hopkins ask the expert is v good and the expert nurse has had breast cancer twice herself and had BMX! Her book 'stealing second base' is an inspiring read.
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Feeling pretty good, 2 weeks into Zoladex treatment. The hot flashes aren't too bad yet.
Got the results from a routine MRI done a few days ago. A 17mm suspicious area was found in the R breast, which was the unaffected side. No node involvement detected. I had a prophy and immediate recon done on the right side. Ugghh - really hoping that this is a false positive.
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Really feeling for you Joy, hope you are recovering well and hoping for a good result- false alarm and clear lymph nodes.
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Joy- hoping it is nothing serious! Did you have BMX? My dr has not ordered any routine scans; I wonder if I should be having them?
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Ginger Yes, I had a NSS BMX to direct implants last November. No chemo or rads. Tami since January and just started Zoladex. My onc in the States does not do routine yearly scans for early stagers, just a physical check. Onc here in Budapest does scans routinely at one year. I had a clear MRI not quite a year ago, to grow a 17 mm mass in a mastectomied breast - wow! I would be a cancer making machine! Not sure yet what it is - will update.
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Joy, Praying for a false alarm for you.
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Joy- thanks for the explanation. Your story is very similar to mine. No chemo or rads for me either. Taking femara since last december. No one seems interested in scans for me either. Hoping it is a false alarm. Keep in touch!
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Got a second opinion on my MRI - this radiologist thinks that it is a normal MRI, there is an artefact, a "chemical shift" on the right side. I will follow up with an ultrasound to make sure. I'm crying in relief - what a scare.
Thank you for the good wishes and prayers. Enjoy each day, ladies.
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Joy... Glad all is well. Your situation underscores the importance of having a good radiologist as part of your team. I won't go into details, but regular mammograms and ultrasounds missed my tumor. Gyno found it during regular exam. Sent me to a women's radiology practice and the radiologist there found it on sonogram. I now see him at every visit. He also makes recommendations when and if I need additional tests.
My humble opinion would be to have a very long discussion with your team and decide whether you need a "better" radiologist.0 -
VR I completely agree. However, while living here in Budapest, I am at the mercy of the Hungarian medical system that I don't yet understand. I was thinking that I could receive cancer care here and not go back to the States as often. My 6 month visits to the MO in the States will continue. I'm glad that I had the MRI, and will send it on to my team in the States. You are right - a good radiologist is key.
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