IDC with High Ki67
Hello to any recent members who might be waiting so anxiously to have surgery to determine if they need chemotherapy treatments. My surgery is coming up mid Oct. My Ki-67 is sitting at 60%. So, does this mean I have an aggressive cancer that has most likely spread? My breast surgeon's office doesn't like answering simple questions without pay, so I too have had to rely on my own research. The plan is to definitely treat me with radiation after a lumpectomy, with reduction of both breasts, and on top of this I have heart disease that makes radiation and chemo a very bad risk to my already beat up heart. The tumor is on my left breast too! I'm 68, IDC, Stage 1, Grade 2. ER+, Pr +, but HER2 negative. My cardiologist just gave the ok for surgery, but it's the treatments I may need that bother me the most. I really care about my heart more than I do my breasts. (If younger I'd feel different about my breasts). Mastectomy is out of question to the breast surgeon. Even my cardiologist said there's some risk to the heart, but the cancer has to be attacked. I suppose from what I can understand that whether or not I will need chemo, will depend more on whether the cancer has spread to nodes or if the Oncotype DX test score is high - more so than the Ki-67 result, but it sounds like it has a good chance of spreading if that Ki-67 is high. Has anyone had this high Ki67 and not need chemo? I think the Oncotype DX test seems more of a predictor of reoccurrence along with aggressiveness of the tumor than does the number or percentage of Ki-67. It's so confusing and it's not explained anywhere in detail as to what my chances are with it most likely spreading due to the Ki-67. Kill the heart or kill the cancer - great prognosis. Will talk to oncologist soon about it
Comments
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Hi there. FYI my MO and BS at a major NYC university teaching hospital both told me they put very little stock in Ki-67. Other factors as you said seem much more important. Good luck and keep us posted.
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Hi Blair2.I hope the oncologist can ease your mind about what your options are. Your hormone positive so maybe they will pursue hormone therapy for you. Remember you need to feel comfortable with your doctors and your treatment plan. I think there is a thread that has people with cancer plus another health issue. Maybe someone on there could help? Waiting is hard.
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Why is the surgeon ruling out mastectomy? Maybe you should get a second opinion.
As others have said Ki67 is just one piece of the puzzle, and not a terribly relevant one.
Best wishes!
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I had a high Ki67 and did not get chemo. I had a Mammaprint test done (similar to an Oncotype) which declared me at low risk. Apparently Ki67 is widely variable in accuracy, at least this is what I was told.
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Thank you all for your wonderful replies - dtad, Meshell, Pupmom, and gb2115! I feel a little better about it - just plain jittery thinking of the worst. There is a plan to be given the hormone therapy for 5 years. I asked about mastectomy, but my surgeon feels it's totally unnecessary. I have read articles that claim the reoccurrence rate for cancer returning for lumpectomy was about the same as it is for mastectomy. I have large breasts, and they (breast surgeon and plastic surgeon), want to reduce my size which is fine with me. Just will be nippleless on one side, which is rather scary, but after all I have to fight this evil cancer, and at my age, I can't be choosy. The tumor is too close to the nipple. If I don't like being nippleless, I could have something done later. My doctors are tied into a large respected cancer center, so I have the best for my area. I will see the breast surgeon this week - next week is the surgery- oh goodness- justnot ready for this mess!
I might also add that I believe the more tissue you have left over the chest, the less likely my heart will be hit by radiation beams. I was told by the surgeon’s nurse that I would need radiation even with a mastectomy. So I think that may be one reason they want to use the conservation breast surgery method. I’ll know more later
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Blair, the outcomes are similar as long as you have radiation following the lumpectomy. A mastectomy usually, but not always, does not involve radiation. From you original post, I thought you were concerned about the radiation affecting your heart. But I cannot second guess your surgeon.
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Blair,
I have a grade 3 IDC with ki67 80%, background of congenital heart defects, surgery and arrythmias from the scar tissue from my heart surgery 45 years ago, so ablations 2 years ago. So I get your heart concerns. My oncologist has opted for a chemo regeime that is less toxic on my heart. I have had a gated heart pool scan and I this will be a regular recurrence to monitor cardiac deterioration. The radiotherapy will be done using breath holding which lifts the breast away from the heart reducing potential damage. But I know in my case and being 53 that I need all the tmts they'll give me. Ive had lumpectomy and know that mastectomies are done primarily with DCIS or small breasts where lumpectomy takes a lot anyway, or large, multi focal tumours. So discuss with your doctors what they will do to reduce cardiac damage. Hope you get all the answers you need!
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Pupmom - yes - I thought too that a total mastectomy would avoid radiation, but I was told it would still be done in my case, in case there are lingering cancer cells floating around lymph nodes, etc. The oncology clinic I’m using has heart sparing techniques, but just don’t know at present which or what techniques or machines they will use. I’ll know more this Friday and will let you know.
Binniebin - glad to hear there are less aggressive chemo treatments for heart patients, and I wish the best for you. I have typical heart disease that is hereditary and part due to past diet. I broke the family history of being the youngest female to have a mild heart attack I didn’t know I had. (They know this by blood tests). To give you an idea of my med record prior to a double bypass, I had a chloresterol reading of 157, no high blood pressure, weight at 145, never smoked, exercised regularly (thought I ate somewhat healthy), and had out of my three main arteries the main 100% blocked, and one 90% blocked and was basically living on one artery. Complete surprise. The only symptom I had was I noticed I was wearing out just sweeping the leaves off the driveway. My stamina was going down and thought it was old age or that my thyroid was acting up! No chest or angina pains. Wasnt even huffing and puffing - just a high anxiety feeling after moving. Knew something wasn’t right, but didn’t think it was a heart problem. That was three years ago at age 64. Was on my third day of Medicare when admitted to hospital. I’m also the first woman in my family’s history to have breast cancer. Just my luck. I worked so hard to protect my heart by giving up certain foods, exercising more, and doing what I’m supposed to do In my condition. Now this! Why
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"Ive had lumpectomy and know that mastectomies are done primarily with DCIS or small breasts where lumpectomy takes a lot anyway, or large, multi focal tumours."
I'm going to disagree with you here. Mastectomies are done when the patient wants it done. I didn't want radiation at all and I had large breasts. I am very glad those suckers are off me, not only do I feel lighter, my back doesn't hurt and my risk is reduced since I'm younger. My boob was trying to kill me, and my other could have done the same - why would I keep them on me when I have young children to raise? It felt like russian roulette keeping them.Many women with larger breasts choose Mastectomy to avoid rads or additional risk. No reconstruction for me (attempted recon was a nightmare) so I'm flat and fabulous and doing great.
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I want to add that mastectomy is usually done when cancerous tumors and/or DCIS are multifocal, meaning all over the breast. You can't get all that out with just a lump. I had just one area of cancer, contained around my nipple, so had a lump plus rads.
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I thought DCIS was not considered a true cancer because it is not invasive- “in situ”. Although it can become invasive with time i supposeif it isn’t removed or treated, so maybe that’s why some women go ahead and have mastectomies just to avoid future reoccurrence due to their perticular situation. I have a friend who in her early 40s had a family history of breast cancer (mother and grandmother) and decided to do a total mastectomy in her case with DCIS. It was 20 years ago. I think doctors are getting away from doing total mastectomies because recent research shows that reoccurrence isn’t as threatful by either method. At least with DIC early stage cases. However, I can see it a much higher risk in a hereditary case. I don’t want reconstruction and especially implants at my age. Implants take maintenance over the years. (Probably wouldn’t live long enough to make any difference). If I were younger, i would choose flap method. The same friend had that done when it was a brand new method and has done well with it. I could live without my breasts if I had to at my age. Problem is, if my cancer is bad and has spread-it might entail a total mastectomy and still will require chemo and radiation. The heart will then take a high risk. So, we’ll see.
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Blair, when there is only DCIS, or LCIS, and it is located in more than one breast area, mastectomy is usually recommended. You can't get everything out with just a lumpectomy, which, by definition, is a small area of excision. "Watchful waiting" is becoming an option, but that's usually when there is just one small area of "in situ" cancer. It's a whole other ball game when it's all over the breast. I know I would want it all out, asap. To my knowledge, all invasive cancer starts out "in situ" so it's a little bit of Russian roulette to just watch it. At least in my opinion.
Another thing is that if the cancer has spread doctors frequently do not remove the lump, oddly enough. They just use chemo, and hormonal therapy, if the tumor is estrogen positive. So that means no mastectomy. I don't fully understand the rationale for this, but many Stage IV women on this board relate this is what happens.
But it sounds to me as if you are early stage!
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Pupmom - I’m Stage 1 DIC. I too would want both breasts removed if they both had multi masses with the DCIS/or LCIS. The purpose of radiation is to kill the missed cancer cells a surgeon might not get - regardless of type of surgery. I guess every case is just different as to what doctors feel is best for that patient. Women should have the right to choose though. Chemo is to kill cancer cells found in lymph nodes as they are the highways to cancer spreading throughout your body. A good example of a woman who had a mastectomy with chemo is Olivia Newton John. I guess she added some different experimental health techniques. She was young in her 40s and it took 25 years to return. Now in her bones. Sad. I doubt I’ll be around in 20 years. However, if I’m correct, she had Stage 3 - a harder type of cancer to kill. Younger women can be at higher risk for return because they have so many years to live. That can make one want a total mastectomy to avoid less reoccurrence, but there are doctors who probably disagree. It’s a crap shoot all right! It makes me wonder what any of us should do
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Blair, I know all that. Was just saying that what's called multi-focal cancer tends to need a mastectomy because a lumpectomy cannot get it all, if it is all over the breast. But, no worries, sounds like you and your surgeon have a plan you are comfortable with.
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Unsure if you mean Newton-John had Grade 3 or Stage III cancer. "Kind" or "type" of cancer usually refers to Grade and/or hormone-receptor/HER2 status, and is the determinant of degree of aggressiveness. "Stage" is somewhat retrospective--it describes what has already happened and not necessarily what will happen.
Grade (expressed in Arabic numerals) is a measure of how aggressive a tumor of any size is, and is determined by assigning point values to various features of the tumor cells and adding them up to come up with the "Nottingham Score" of grading. It is possible to determine that before surgery, though final post-op path reports are considered definitive. Of all three grades, Grade 3 is the most aggressive--hormone-receptor and HER-2 status are additional independent variables for determining aggressiveness.
Stage (expressed in Roman numerals) is a measure of how far a tumor has progressed, both in growth and spread, regardless of its aggressiveness. Stage 0 is DCIS, a pre-cancer that is most prudently considered and treated as if it were cancer. It is "in situ" (still wholly in the ducts) and genomically/histologically different from invasive cancer. "Watchful waiting" for DCIS is still highly controversial, and is not an option for higher-grade DCIS. LCIS, however (confined not to the ducts but to the lobes), is not considered a pre-cancer but as a major risk factor for developing an invasive tumor. Watchful waiting (periodic, perhaps semi-annual, vigilance via exam & imaging) is an accepted mode of treatment. ADH (atypical ductal hyperplasia) is definitely neither a cancer nor pre-cancer but a slightly lower risk factor for invasive cancer than "in situ" carcinomas and is usually treated with simple excision and no lymph node biopsy.
Invasive cancers are staged from I to III, and A or B depending on lymph node involvement. Because invasive ductal carcinoma (IDC) is genomically different from DCIS, it doesn't always start as true DCIS--if it did, it mutated somewhere along the time to become invasive.
If Newton-John had Stage III cancer, it was either IIIA: 2-5cm (or "occult," i.e. couldn't be found) with 4-9 positive axillary nodes or has enlarged one or more internal mammary nodes; or over 5cm and hasn't grown into the chest wall or skin, had 1-9 positive axillary nodes or 1-2 internal mammary nodes; IIIB is any size and grown into the skin or chest wall with any one of the following: no nodal involvement; 1-3 axillary nodes &/or tiny amounts of cancer in the internal mammary nodes; or 4-9 axillary nodes. Stage IIIC is any size and has grown into the chest wall or skin (or occult); and any one or more of the following: more than 10 axillary nodes involved; spread to the nodes above &/or below the collarbone; more than 4 axillary nodes plus tiny amounts in the internal mammary nodes; or any number of axillary nodes and has enlarged any internal mammary nodes. (Inflammatory, or IBC, is always staged at least IIIB). All Stage III cancers have not spread to distant parts of the body.
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If you're going to need radiation anyway even after mastectomy, your heart would be better protected with lumpectomy and reduction, because the rays are less likely to reach it. Lumpectomy can always be revisited--many here went on to get mastectomy afterward. But mastectomy is forever. Once a breast is gone, it's gone. Personally, I wish I'd chosen bilateral reduction after my lumpectomy (the "girls" are still huge and the untouched one noticeably bigger and droopier when I'm naked), but the longer recovery and delayed radiation onset would have upended our whole family schedule and scuttled plans for the dream cruise we did take. If I have several months free, I might still consider it. But I'd also like to remove some belly fat (and overlying irreversibly stretched skin). I, however, am a surgery wuss and inclined to believe that at least when my life and QOL are not at stake, less is more. (Maybe that makes me a "surgery Mies-ian").
But it is always your decision. Your surgeon might not like it, but is bound by it. If (s)he disapproves to the point where (s)he wouldn't perform it, there are other "fish" in the "surgical sea."
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Wow ChiSandy - thanks for all the detailed explanation. I think Olivia NJ must have thought she was cured to have it not return all those years. (It’s why we are called survivors only after all). She is a rare case though. Because she’s a celebrity, it just seems it might happen more than not for it to return like that. The statistics makes it seem like our chances of return are so slim. I hope that’s true. Also, I think it was more or less explained to me that having some breast tissue helps keep the radiation rays away from heart, (provided they use the controlled beam technology), but it’s a point I’m going to discuss with my oncologist. I’m going to ask her to show me the machines so I can research how they spare the heart area. I see we are quite an all alike group here with our same diagnoses. However, I’m nervous about the final outcome of the surgery. Will have the Oncotype DX test and lymph node mapping. I’m so glad you all are helping me think about this. I hope we can live many more years without the fear of cancer returning. Tomorrow I visit the plastic surgeon again, and my breast surgeon, then the oncologist Friday. I will let you all know what I learn from the ones I’m at the mercy of!
Pupmom - understand. Not sure if I’m comfortable with any of it right now, but I better hope these are right decisions I’m making. I’m glad both you and ChiSandy had the lumpectomy method so I can relate. I may have more questions later after surgery about how your healing and radiation treatments went. Anyone else I missed here are welcome for comments on that step too. Thank you for all your input
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My KI67 is 96%. I'm also her2+, so it's probably pretty aggressive. I was told many facilities don't even use the KI67 number since it can be so inaccurate, but I opted for chemo even though my tumor was only 5mm and there was no node involvement, because of how aggressive it seemed. To be honest, my 4th weekmof taxol is today and I'm wondering if I should continue. What if chemo isn't necessary and I'm doing this to my body for nothing? I wish there was a way to know for sure.
As far as radiation, which I will do after chemo, I was told they point the radiation specifically where they want it and avoid other areas as much as possible. If your lump isn't so close to your heart, perhaps radiation won't actually touch it?
It's so hard to know which surgery and treatment path to take, isn't it
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Brightness, my understanding is that Herceptin needs to be given with chemo to be effective. So, you are definitely doing the right thing. Her2, no matter how small the tumor, is very serious. Herceptin is truly a miracle drug, but only if taken with chemo.
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pupmom, I get taxol weekly for 10 weeks, but herceptin is once every three weeks for a year. I know some people on this site only get herceptin, no chemo, but apparently insurance doesn't typically cover it that way in the US so it's not the norm.
I just keep looking for a way to justify stopping chemo, but in the end, no one seemed to be able to say if I really needed it or not and what a terrible gamble to take and be wrong about. Still, my mind simply can't seem to accept that this is my life now..
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Brightness, chemo with Herceptin is the standard of care. Some docs will do Herceptin alone, but only if the person would otherwise refuse all treatment. I know of at least one early stage person here who refused chemo with Herceptin. She is now Stage IV. Originally was Stage I with a tumor under 1 cm. Of course it could have happened anyway, but in my opinion, why take the chance? If a person has preexisting conditions that absolutely rule out chemo, that's another matter.
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Went to see my oncologist yesterday. She talked a long time. She listened to me intently and I like her just for that reason. She’s well liked by her reviews. She told me they had a face down machine that would avoid the heart the best. True Beam type where you face downward. She said if I tolerated the MRI, I would do fine with this radiation machine. So I'm in great hands I think as this seems to be a good cancer center. She said my MRI images were very good as far as the clarity. That's because I didn't move an inch for an hour! Although she won't know the exact treatment I will need until after the surgery, she thinks my radiation treatments will be about 10 minutes each. Everyday for 6 weeks. About all she said with chemo was that they had different ones for heart patients. So my only hope is that I don't have cancer in my lymph nodes. All doctors seem to think I’m not likely to have that happen, but right now, nobody can be 100% sure. Won’t know until a week after surgery. Surgery is next week - I’ll post when I know the results. Waiting for results is so nerve racking! Let’s hope some day they will get this whole process down to one step of diagnosis.
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Sorry it took a while for me to post again. My surgery was almost 2 weeks ago. I’m of course still healing, with a left nipple that has antibiotic gauze and non- stick bandage on it for a while. It was completely removed and relocated. That was good news in the progress of my surgery. It was warned to me that it wouldn’t likely be saved, but was. All 5 lymph nodes were clear. However, on my right breast, there was a pre cancerous mass found and removed with the excess tissue taken away for my breast reduction. I think once everything heals, I will like my smaller breasts. Oncotype DX tests should come back next week. If I end up with an intermediate number I’m going to demand a Mammoprint test. I want to avoid chemo at all costs - still feel my old body/heart can’t take it. I thought my radiation doctor was my oncologist, but now I have an appointment with an oncologist in Nov. - so many doctors! Thanks to you all, I’m not concerned that’s much about the Ki67, but scared of the Oncotype results. I’m still in denial of this mess
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