Mucinous Carcinoma of the breast
Comments
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Linda-Renee...Sorry to hear that you have needed to revisit active treatment. Just want you to know that while the OncotypeDX test is strongly validated for those with TRADITIONAL IDC, it hasn't been as conclusively validated for us mucinous sisters due to the much smaller sample size. While Dr. Weigelt and her colleagues are "comfortable" with the OncotypeDX test confirming, the more or less "favorabilty" of the OncotypeDX test for most mucinous breast cancer patients (scores average 15), the NCCN guidelines have still NOT written them into practice, as they have done so for TRADITIONAL IDC. So, while the OncotypeDX score is always good to have when making a treatment decision, it should be recognized that it is simply one of MANY tools used to determine what active treatment is right for each individual.
Regarding the colonoscopy...recently, a dear friend who doesn't have breast cancer was not feeling well. Blood test determined she was low in iron and was advised to have a colonoscopy and endoscopy. Surprise ....she had internal bleeding from a tiny ulcer. Had to take all kinds of antiobiotics and iron and is finally feeling better.
Regarding the DH....hey, Destina found her way to the Bonfire of the Goddesses thread. Why not join us there as well. We're goddesses and support one another...So bring some marshmallows and a blanket and come join the party.....
I wish you well!
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Thanks Voraciousreader! I will check out the Bonfire thread, and see you there! It's amazing how therapeutic it is to be able to vent. Thanks for always being there!
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Surprise! Surprise! What do you know? It's January already. Just want all our sisters here to know that I've been in touch with Dr. Weigelt (who studies mucinous breast cancer) and she continues to set up her lab at Sloan Kettering! We've agreed to hold off on our visit until March. Until then, the champagne continues to chill...like the weather here in New York!
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I was diagnosed with mucinous carcinoma of the breast in August of last year and had my lumpectomy December 6, 2012. It was 1.2cm, close to the nipple, had 2 papillomas removed one of which had some hyperplasia cells, the mucinous tumor was at 2 oclock and the papillomas at 3 oclock. I am 60 years old and definately postmenopausal!
The first surgeon I spoke with wanted to triangulate her surgery from tumor to papillomas which, according to her best guess, would remove about 1/4 of my breast to get enough tissue to get clean margins. She felt that it would not heal correctly so she thought that a mastectomy would be better for me. That was not acceptable to me! So I sought a second opinon and that surgeon removed the tumor and papillomas separately with enough tissue for clean margins. The only physical "defect" is a very slight dip on the side of my left breast. Healing has gone well so far and my biggest complaint has been that my nipple was really sore for awhile! The sentinal lobe was removed and it tested negative for cancer. I had all clean margins as well. I was also told that my KI67 is 8%. I would have more info but I haven't picked up my copy of the pathology report from my lumpectomy. BTW all of my medical records concerning my breast cancer were destroyed by the hospital after they downloaded the information into the computer system even though I asked them to give me back the reports and CDs. So annoying. I haven't called the records department yet but they better have everything I gave them because I want all of the information for my personal records. Lesson learned: mark everything with "DO NOT DESTROY. RETURN TO PATIENT!"
My current dilemna is that I don't want to have any further treatment. I have already been told that I won't have to have chemo which is good. I may decide to have some radiation if the radiation oncologist will agree to fewer treatments with less rads. So far I have been told that without radiation I have a 20-40 percent chance of getting breast cancer at age 80. Of course I may never get breast cancer again and then even with radiation I might. I won't take any hormone suppressing drugs. BTW my family is rather short lived on both sides with life expectancy of around age 70 due to obesity, diabetes and high blood pressure. However there is the odd relative who lived past 80. I am pre-diabetic with no meds.
Currently I have converted my kitchen to all organic. I have given up all "normal" processed and fresh meat. I now buy grass fed, antibiotic free, no added hormone beef and organic chicken and pork as well. I've lost 10 lbs in 2 weeks and will be getting a juicer for my birthday later this month. I plan to attack cancer by changing not only what I put in my mouth but what I put on my skin as well. Gone are all the toletries I used to use. I've changed the cleaners I use in my house as well. And have plans to change much more. Fortunately I have the support of my husband and childrfen.
And more importantly for me, in the last year and a half I have made my spirtual life a priority. As a Christian I am walking away from all forms of toxic faith as I become aware of them. Jesus is my priority and the bible is my source of strength and encouragement. Has anyone else made big life changes in order to prevent cancer from coming back? I would love to hear what others have to say about a nutritional approach to health through organic, gluten free, vegetarian, or vegan food choices. Has anyone refused radiation and meds? What about spiritual or philosphical changes to improve one's life outlook?
I've jumped around this thread a bit and I really like what I've read. I look forward to reading past & furture posts and hope to get to know many of my "MC sisters".
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Roxy...Welcome! I'm so happy to hear that you went for the second surgical opinion and got great results! Now regarding doing radiation and whether or not to do endocrine therapy, I think you should get a second opinion as well on those protocols...because the points you make regarding risk vs. benefit as they relate to your family history are all important when it comes time to decide what treatment is right for YOU.
Regarding diet, we've had lots of sisters tell us they were "healthy" before their diagnosis. Some were vegans, some only ate "organic" while some were even marathon runners. I've always considered myself "healthy" before my diagnosis and boom! Meanwhile, my sister, who has so many things wrong with her, obesity, controlled hypertension, pre-diabetes...hasn't had cancer. Go figure.
The bottom line for YOU is that you have your family's support, your faith and so far a great surgeon helping you. Once you get those records, I hope you will get a second opinion from a radiation oncologist AND a medical oncologist. Good luck! Keep us posted!
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Thanks VR! I've already gotten an opinion from the second radiation oncologist who gave me the stats on getting cancer by the time I'm 80. She was a very interesting person who was very candid with me. BTW she told me that I was not a candidate for the kind of radiation they normally use, which is similar to mammosite radiation therapy, because of the two adjacent cavities where the papillomas were. Instead I'd have to have the "old fashioned" radiation (whatever that is). But she said there was a woman recently who had the "old fashioned" radiation who wound up with a broken rib which was very painful! That comment was definitely an eyebrow raiser. She also spoke with me briefly about chemo and Arimidex. She said I would need chemo since my tumor was 1.2 cm (they typically require chemo for any tumor larger than 1cm) however I told her I would not do chemo. She said with MC I would probably be ok without it. And because my husband is without a job and we are running out of money for Cobra insurance (he worked for Hostess Cakes and was due to retire in April) she said "Oh, you probably won't have money for any hormone suppressing drugs....well again with this type of cancer you will probably be fine."
So I've got an appointment with the first radiation oncologist I met with who is offering me three radiation choices: twice a day for a week, once a day for three weeks or the standard 6 weeks of radiation with the promise to fine tune the radiation so my rib cage and heart are spared. She wants to do whole breast radiation and I disagree since both the tumor and pappillomas were close to the nipple. We'll talk when I have my next appointment or maybe I'll call her. Anyway, at that hospital I was told very early on they would not require me to do chemo due to the type of cancer I have. She has seen the pathology report from my surgery and still agrees with that although I need to see a medical oncologist for the final opinion. Different hospitals apparently see things differently.
Mucinous carcinoma of the breast is a blessing due to it's high survival rate which is wonderful. However it's frustrating to try to find information about it with most websites like Mayo Clinic, Memorial Sloan Kettering, and the American Cancer Society that list MC in the "other" category or not at all with perhaps a sentence or two proclaiming it's favorable outcome. BreastCancer.org gave me the most help in finding info on MC. BTW has anyone else seen this type of comment about MC that state "some authors have raised the question of whether radiation therapy can be safely omitted after breast conserving surgery in patients with this tumor type"? MD Anderson has an interesting study on MC that questions it's favorability yet quotes the overall survival rate at 87% to 97% for 5, 10, and 15 years after treatment depending on local control or disease free survival statistics from the study!
I am frustrated with "standard of care" and what I call "standard of statistics". Since MC occurs in 1% to 3% (depending on who you believe) of all breast cancers. I have to then assume that "standard of care" is based on the other 85% (another statistic percentage that varies) of breast cancers that represent the most common breast cancers. I am not happy with treatment not based on my personal stats. I'm selfish enough to want it personalized!
Yes I know that "healthy" people get breast cancer. There are no guarantees. However I am more concerned with understanding and dealing with the impact that conventional food has on our bodies and why so many people are now sufffering from all kinds of diseases due to our bodies lack of ability to process that food. It's very disconcerting to be told that I must take a hormone supressing drug but know that every bite of meat laden with hormones or glass of milk is flooding my body with the very thing I don't need. But Doctors don't address the issue or don't see it as being important. I am also very aware that many people scoff at the idea of eating "organic". So be it. Even without eating organic there are significant changes that can be made by avoiding all foods with high fructose corn syrup, over processed flours and processed meats like hot dogs and bacon. We are what we eat!
I wiil lightly discuss my feelings with the radiation oncologist and medical oncologist. I'll feel them out however I doubt we'll see eye to eye. It makes no sense to insult or offend doctors who have been trained to see things a certain way. But I am praying about this so we shall see what happens with the discussions that are coming.
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Inspired by what RoxyH just wrote about nutrition, I thought I would weigh in (no pun intended). A book that may be of interest to those wishing to look at nutrition issues is Eat to Live, by Dr. Joel Fuhrman. I saw him speak on a PBS fund-raiser and he had a lot of interesting things to say. He has another book dealing with the immune system called Super Immunity. Both have recipe sections as well as the usual testimonials and text. I have almost completely cut out meat (although I do not refuse it when we are invited somewhere) and have increased my fruit and veggie intake as well as legumes. I buy large quantities of fresh organic veggies, (kale, swiss chard, peppers, mushrooms, garlic, onions, broccoli and whatever else is around) cut them up into small pieces, toss them together in a huge bowI and then divide them into ziploc bags and freeze them. Then when I want to have something to add to quinoa or barley or kasha or spagheti or soups, stews or anything else, they're ready and I don't have to spend all that time preparing them. I'm also less tempted to reach for the less healthy options. have begun visualizing MC as a nasty-looking dragon with a very long tail that comes back to slap you in the face when you least expect it...I guess we can never really get away form the beast, but if improving what I eat helps, I embrace it wholeheartedly!!!
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Well, Roxy! You did your homework!!! If you read this thread, you will note the MD Anderson study. I'm including it here again because I think it is important:
I believe Dr. Perkins retrospective analysis is important to note. Clinicians do need to be careful about undertreating mucinous breast cancery because of its "favorability." That said, and as you have pointed out, there really isn't much clinical trial information specific to mucinous breast cancer, so they have to use the statisics garnered from clinical trials with a greater sample from patients with traditional IDC and/or retrospective analysis, such as the info from SEER. You'll also note that most of the recommendations that are found in the NCCN guidelines which are considered "The Standard of Care"....most of the evidence for mucinous breast cancer is in the "Catagory 2B," where as for traditional IDC, it is "Catagory 1." "Catagory 1" corresponds to the strongest evidence. So where does that leave us? Well, we have in the NCCN our own guidelines (along with our Tubular sisters). And you are correct, for most patients with pure mucinous breast cancer, if their tumors are less than 3 cm, you are more likely NOT to be offered chemo. That isn't a hard and fast rule. Just a guideline.
Regarding endocrine therapy, you really should sit down with a medical oncologist and discuss what the risks and benefits for YOU are. You are correct that with mucinous breast cancer, your prognosis is very "favorable" and the amount of benefit you might derive from endocrine therapy might ultimately be small. But again, if you look at the NCCN 2012 breast cancer treatment guidelines, they do mention that for patients with tumors between 1 and 3 cm, endocrine therapy should be "considered" and for over 3 cm it is "recommended.
Regarding diet. I didn't want to discuss it, but since Linda-Renee chimed in, I guess I should mention where I'm coming from. The DH has a rare genetic metabolic muscular dystrophy. It it an orphan illness, way, way, way more rare than mucinous breast cancer. There were only 500 people in the world diagnosed with it when my husband was diagnosed nearly 20 years ago. Because it is a metabolic illness, if he doesn't have the "right" diet, he could die, because he is missing an important enzyme that metabolizes food into energy. So every day we struggle with meeting his dietary needs. We work with world class geneticists, endocrinologists, exercise physiologists and dieticians. Because of his disorder we follow a very strict, healthy diet. He has blood work done every three months. He also has other illnesses, such as heart disease. So, keeping him vertical has become a full time job for both of us. But the most important part of keeping him well is making sure he eats the best food that derive the most bang for the buck in terms of energy. All of his physicians keep a close eye on his blood work and how he feels and we constantly manipulate his diet depending on the blood work and his energy level. The bottom line is that there are some great food choices out there that don't necessarily have to be "organic" or "vegan." He eats a diet rich in a variety of foods. None of his physicians have ever told him that a particular food is taboo. Since he can't process a statin, he must find healthy ways to keep his cardic risk at a minimum and also build as much muscle as possible. Every day, we walk a fine line meeting those needs. And then there's the exercise that he must do to build muscle, while not breaking down for energy the muscle his body stores .
Soooo....what exactly am I saying? We've been extremely careful with diet for more than a dozen years...and it hasn't prevented me from getting cancer. Sure, I'm petite and slender and otherwise healthy. And you know what? I enjoy an occasional ice cream and regular soda and even eat a Big Mac from time to time. Not often, but from time to time. So if anyone wants to change their diets, please be my guest. But I'm not so sure that diet is going to usurp our genetics. Sure we should all diet and exercise...but in moderation is good enough for me!
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Well I am annoyed LOL. I typed a reply and it didn't send.
Ok I'll be back and start over. BTW how do you type the comments that appear at the bottom of each post? I found and put in as much info as I had but couldn't figure out how to place a comment there.0 -
Roxy... You just replied! Can you repeat what you just did??? Is there a box below the comments for you to comment? You can reply there OR click "Post a Reply."
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Hi all my MC sisters, sorry I have been so busy dealing with our hot weather, it got to 113degrees fahrenheit last week (we measure in centigrade so it doesn't sound so extreme, it was 45 degrees centigrade, v.v.hot) We are in Sth Australia so didn't get so many bush fires which was a blessing. Sth Eastern Australia (Victoria, New South Wales and Tasmania are still struggling with excessive heat and many bushfires.
Plus at last I have met up with my half brother's family (some of you may remember it took me over 55 years to find him again). He brought his wife and two teenage sons from NSW to meet all of our family, 16 of us at the family reunion.Everyone got on extra well so that's another blessing. So that has given us a super special 2013.
So MC sisters back to the regular prayer support, I have been a bit lax lately. So am now including our recent additions.
RoxyH, I too have difficulties adding anything to what I call the signature box. I can't alter mine and its is not fully accurate. I will do you an example below, so my way of dealing with it is to go straight into edit and copy and paste my accurate info plus comments from a spare doc I keep in Wordpro or whatever typing system you use.
Another IT clue I use when I too send a reply and it gets lost, which is exasperating. I find if you go back to the top left hand arrow and click it back, often you can retrieve your reply as it may still be sitting there, either resend or copy and paste it and use that copy to post another reply. I am not an IT person but try and work out my own solutions. I hope I have written it clearly enough to understand. Hope it helps you Blessings and prayers from Tricianne.
Now I copy and paste my own in egTricianneAust Diagnosis: 10/20/2010, DCIS & Pure Mucinous Cancer , 2cm, Stage I, Grade 1, 0/3 nodes, ER+75% /PR+ 75%, HER2-. Lumpectomy, Tamoxifen, 25 x radiation, Vit D deficiency being treated. Feeling fantastically normal & healthy. Nov 2012 Mammogram all fine.Then if I wanted to put my favourite scripture while undergoing treatment I add that.Matt 6:34"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.0 -
Oh...I get it...the "signature box." Just go to the very top of the page here...to the left of the Log In...there is a box that says "My Profile." Click "My Profile" and then look for "Settings." Click "Settings" and then scroll down to "Signature" and then write whatever comment you like!
Great news Tricianne! ...and keep cool!
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Well it worked Voracious Reader, I have tried before & couldn't get it to change however this time I even managed to get my photo (Avatar, whatever that is) up the right way. So thanks RoxyH for raising the problem and thanks VR for giving me the info to fix it.
Ooops then I had to make diagnosis private or that old info came up in the signature box as well so still had to edit this time. But next time it will be under control
Blessings Tricianne
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Tricianne....YIPPEEE!!!!!!!!!!!!!!!!!!
....and GREAT PHOTO!
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Good morning mucinous sisters,
I've been offline for a few days and out living life..and after living 24/7 cancer a while, this felt great. ;-)
I got my path results from surgery and it was exactly what I'd hoped for...clean surgical margins and negative nodes (she took 4)! My tumor was 0.5cm, so very small. From what I read on the NCCN guidelines, no further adjuvant treatment is recommended though hormonal therapy could be an option. In any case, I meet with my surgeon today, followed up by a visit to the oncologist, so I'll be interested to hear what she has to say.
Mostly I am tremendously grateful at this point. I have one minor nagging concern. I was offered an MRI earlier, but after speaking with my surgeon and reading what other major cancer centers are doing, I declined it based on my low risk and the high incidence of false positives. Afterward, I read a paper about mucinous types having a tendency towards multifocality. That combined with the fact that so many are missed on mammogram (mine was not detected on mammo) has me somewhat concerned that smaller cancers could be lurking. If I were making the choice today, I would opt for the MRI. However, this may also be a fear that women diagnosed with cancer experience period. I'll talk with the oncologist and see what she has to say.
My tumor was diagnosed when I went in with a bloody discharge symptom. As I said, the diagnostic mammo was negative, but they found 2 spots on ultrasound. One was the mucinous tumor and the other was a benign papilloma. My surgeon feels the papilloma was the cause of the symptom (it disappeared after biopsy) and that the cancer was found incidentally while still so small.
Anyway, 5 days post op and feeling better everyday. Still sore but bruises are fading and I'm healing remarkably well.0 -
Okay, quick addendum post doctors appointment -
Surgeon was pleased with healing and went over final path report which was slightly different than the call I received on Friday, but still very favorable. Tumor was 0.6cm, there were 6 nodes removed (still all negative), there was a small amount of DCIS, grade 1.
I talked with both the surgeon and oncologist about options and about my feelings about the MRI. My surgeon seemed reserved about it because of the high incidence of false positives and the minimal risk posed by my cancer. The oncologist said she felt it was reasonable and would order it if I wanted it. After that, we talked about radiation and hormonal therapy (likely tamoxifen). Again, some differences of opinion. My surgeon said because you can only have radiation one time, that she's not sure she would use it for this cancer because if I do and then have a recurrence, I'd be looking at a mastectomy. Oncologist was more a proponent for radiation, but agreed it wasn't a clear cut decision. Both felt that tamoxifen was a good choice for follow up for 5 or 10 years.
So, I have some processing to do and I have a radiation oncology consult in a few weeks.
Talked about the Oncotype DX test. I'm just at the low end for justifying it at 0.6, but the medical oncologist said that she didn't think we'd gain much due to the favorability of my pathology (low grade, ER/PR+, Her2-, low ki-67, tumor subtype) since we're not considering chemo. I asked if the Oncotype DX could serve as a predictor of the efficacy of radiation, and she said there is early research being done, but nothing to stand on yet.
Of course, I'll be researching pros & cons of radiation myself but I'd be very appreciative to gain your perspective, VoraciousReader.0 -
Destina... So glad to hear all is going well and there have been no surprises.
First off, I had an MRI prior to my surgery that picked up a drop of DCIS that both the mammo and sonogram missed. The mammo missed the tumor too! I haven't had one since, but I think it's a good idea to have one at some point. I can't say when a good time is to have one because of the false positive issue. I have a terrific radiologist, so I told him I would schedule my screenings based on his recommendations. So far, IMHO he hasn't gone overboard imaging me. So my best advise is to find a radiologist whom you trust and let them decide what kind of imaging you should do and when you should do it.
Now, for the harder question regarding radiation. Without a doubt your prognostics are excellent. But I would try to do the Oncotype DX test to help you decide if you need to have radiation. If you have extremely wide margins and a very low Oncotype DX score and the radiation oncologists thinks you can safely defer radiation, then perhaps it makes sense. If it were me, I would probably want to have the radiation. The way it was explained to me is that it creates a sterile environment within the breast. I breezed through six weeks of whole breast radiation and haven't looked back... But then again, my tumor was three times the size of yours.
You really have a lot to consider. Having such a favorable prognosis gives you many choices. Again, just like with finding a great radiologist whom you can trust is important, I think you need the opinion of a great radiation oncologist as well. My radiation oncologist was the one who spoke those kind words that I include in my signature...He said regarding my prognosis, "You're not on the Titanic."
I wish I could offer more in the way of an opinion. My best advise to you is to continue what you are doing. That is, doing research and getting opinions from the experts whom you trust the most.
Keep in touch and let us know what you decide. You will be helping future sisters who stumble upon this thread. Thank you and good luck!0 -
Argghhh busy busy busy. Just talked with RO nurse. Insurance hasn't approved CT scan. Since our insurance is running out I am aiming to hopefully get the CT Scan so I have get measured for RT. However it will take 90 days for insurance to kick in for the new job. But because of having had a MC tumor the nurse agreed that in all probability I'll be fine if radiation has to be postponed. She said I was choosing to look on the bright side of things because I can. Funny how honest the doctors and nurses I have spoken to can be when there is no insurance. My sister says they are placating me which is a horrid thing to say. I then retorted with ..oh so doctors lie to us if we have no money? Thanks for helping to me not trust doctors! I thought they were concerned for our health. Family in health care are not always helpful.
I am learning a hard lesson. Everyone has an agenda it seems. I choose to believe that when a doctor or nurse is candid with me that they are being honest because MC has a much better outlook than other cancers. If they are lying and deceiving me then what hope is there and who do I believe?? My husband will get insurance after 90 days on his job and nothing can change that. I am DEPENDING on doctors being honest with me.
So I will continue to eat whole healthy organic foods, pray and believe that I am not only to be fine but thrive!
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Hi RoxyH, if it is any consolation I ended up waiting 96 days prior to starting radiation. I had my operation on 24th Nov 2010 and was scheduled to start radiation on 28th Jan 2011 I was having radiation at an Australian Public Hospital near to my home (totally free of charge) however the hospital radiation section was unexpectedly closed for a month for checking and upgrading of machines so my treatment (I was not a high priority case due to the MC grading) was postponed until 28th February. So that was actually 96 days from surgery to radiation and I am totally ok about that. My lumpectomy had completely healed and I coped with the radiation superbly even though with my v.English skin they had anticipated some burning. The oncologist had shown me some research in case I was concerned about the wait that indicated that the optimal time from surgery to radiation treatment was prior to 16 weeks ie 112 days. So I do hope that is some reassurance for you waiting for the insurance period to kick in.
I do eat very healthy with a large percentage of organic food. My progress has been very good and I am certainly thriving & as you can see from my diagnosis your situation is even more encouraging.
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Tricianne,
Thanks for your comments. Even though I can't point out the women who have had to wait for radiation to begin I "know" it happens. I can't be the first person to have insurance problems. We do the best we can with what we have to work with.
My RO is actually contacting a leading RO about the questions I asked her today. She had mentioned an article he wrote that I had also read so we have quite the chat concerning the study he participated in concerning mucinous carcinoma. She was very nice but as I suspected she kept recommending stardard of care without giving me satisfactory answers to my questions. And yes my pathology is excellent which makes me very happy! I'm still considering my next step so we shall see what happens in the near future.
Glad to hear that you are an organic food consumer. We may as well do the best that we can for our bodies. I'm glad you're doing more than well and are thriving.
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Thanks for your reply RoxyH, hopefully all the insurance issues will iron themselves out, it is a pain when red tape ties us in knots.
Thanks Voraciousreader for all your help with the IT its working well with your help.
Meanwhile I am praying for you all that the New year sees you all in full recovery mode.
Blessings and prayers Tricianne
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Hi Everyone, I'm 29 years old. I was diagnosed with mucinous breast cancer a couple months ago, October 2012 and I have a huge dilemma. My tumor was 2.5cm, clear margins and 0/8 nodes affected (node negative). So my dilemma is that my oncotype dx came back and I received two different opinions from two oncologists regarding treatment:
Dr. #1 - my recurrence percentage was 15% and the benefit of chemo would only be 5%. I fell into the dreaded gray area and the doctor left it up to me to decide on whether I wanted to do chemo or not. His advice was that if he was me, he doesn't think the small benefit of 5% is worth it and go through that kind of sickness.
Dr. #2 - this doctor recommended the chemo. She feels that 5% is a huge difference of survival. But she also mentioned to me that the recurrence risk scale would be shifting soon due to new research and that instead of me being at a low/intermediate risk, I would be considered intermediate/high risk. So based on a different module, my recurrence rate is 37%, with chemo, radiation and tamoxifen it would reduce it to 13%.
I'm so confused! I only have until Monday to decide and I feel overwhelmed with information. I don't know what to do or who to believe as both doctors have a valid point. Has anyone here been in a similar situation? Any advice would help.0 -
Sending you good wishes as you make this hard decision. Please know as difficult as this choice is for you to make, you will choose the right path for your situation. I was in your shoes a little over a year ago, falling in the "intermediate score" and one doctor recommending chemotherapy and the other not. My situation was different as I am much older (59) and my first doctor concurred (or maybe deferred) to the doctor with the second opinion. The doctor that I went to for the second opinion heads up the Breast Cancer Clinic at the NCI designated research center which is at the University in my state. While she is several hours away, my MO has worked closely with her in the past and he now heads up the University's satellite Breast Cancer Clinic in my city. Bottom line, I had a lot of confidence in both of them and that helped me. Another thing that helped me make my decision was really reading the Oncotype report and studying the charts and information that was included so I knew that I understood my numbers and how the doctors came to their different recommendations. Please know you have lots of support and positive energy coming your way today.
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CDSC... Don't feel pressured to decide in 24 hours. Ask for a third opinion, and/ or ask that your case be presented to the tumor board. That is a group of oncologist specialists who meet weekly to discuss cases. Good luck and let us know what they say and you decide.
If you only go by the two opinions, I think knocking off an absolute risk reduction of 5% at your age translates into a large relative risk reduction and might be worth it. If you are opposed to chemo, you can discuss ovarian suppression with your doctor.
Regardless, I think the tumor board can be of great help!0 -
Thank you Golden01 and voraciousreader! My case was brought to a tumor board and it was split down the middle. Can you believe that?! The reason they are pressuring me to make a decision is because it has been two months since my lumpectomy and they want to start treatment right away. They say that the longer you wait, the less effective treatment can be.
While doing chemo might give me some peace of mind, I don't think it will ever completely take away the nervousness of it coming back. And I still don't know where I stand on then 5%. But I also think I should take every precaution. This decision is so hard!0 -
CDSC! Well! What do you know! Your case WAS presented! Down the middle!!! Yikes! So unfair! So it really is your call.... Do you understand statistics with respect to absolute and relative risk? Was that explained to you when you were given treatment options? A great place to put your statistics into perspective is via the cancermath.net website. Check it out. Five % may sound like a low number to you. However, relatively speaking going from 15% to 10% is a relative 50% reduction. That could be a large benefit. Keep us posted. Hope cancermath helps!
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VR is right, with the Tumor Board split down the middle, Yikes! I'm with VR, I hope Cancermath is a help and that you will have peace of mind with your decision. Clearly, you are making the decision carefully and with the best information available.
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Thank you so much for that website. I was wondering if they had anything like that so I'm glad to see there is. I'm very open to any information I can find. Thank you for being so helpful. I will keep you guys posted on my treatment.
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Checking in on the most informative discussion of all.. Thanks again, Voracious.
CDSC, a split down the middle! You're clearly doing your research... and you're in the right place to find the resources. It can be overwhelming, but you've set yourself on the path of making the best decision for you. Good thoughts to you as you make your decisions.
Without going back over 'what I thought I knew" and what is posted here, I thought chemo was seldom recommended for pure mucinous, not because of it's 'less aggressiveness' but because chemo has less success with mucinous, compared to other breast cancers. Am I way off base here?
I actually had chemo, but that was because my pathology came back with HER2+ (putting things in the ridiculously rare category) Generally, the treatment for HER2+ (herceptin) responds better when given with chemo... so that's how I ended up there.
Finished the harder part of chemo 3 months ago, still doing herceptin and have been on tamoxifen for two months. Even with allergic reactions to chemo, I have to say chemo went very well. I know.. sounds crazy... but it was so much easier than what my daughter went through 2 years ago for a germ cell cancer in the ovary. All about perspective, I suppose. And each person can react differently to the same chemo... but generally I've noticed those who've had the protocol I had, find it do-able. Now, doing fine on the herceptin and tamoxifen with only really minor side effects. It is nice to have my hair growing back, I must say.And the grand news! That same daughter who is healthy and well, had a baby girl Dec 28! Yes, they are both miracles.. and yes, miracles happen all the time. ~smile~
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Feelingthemagic! What a blessing and great way to start the new year! ....a healthy new baby! I hope mother and daughter AND mother and daughter are doing well!
Feeling....The latest research, albiet small, appears that pure mucinous breast cancer is less likely to respond to chemotherapy in the pre-surgical phase.
http://www.ncbi.nlm.nih.gov/pubmed/22277312
Likewise, for those who follow the minute differences in the annual NCCN breast cancer treatment guidelines, chemotherapy is usually reserved for post surgery, node negative tumors OVER 3 cm.
For those of you who have the OncotypeDX test, NCCN guidelines DO NOT include the test in their recommendation as they do for "traditional" IDC. However, according to the company that makes the test, the average score for mucinous breast cancer is "15." According to the Oncotype DX test, a score below "18" is considered low risk of recurrence.
Now, CDSC gives us some interesting news. Without knowledge of what her actual score is, she says regarding the second physician recommendation the following:
"But she also mentioned to me that the recurrence risk scale would be shifting soon due to new research and that instead of me being at a low/intermediate risk, I would be considered intermediate/high risk."
What I believe the physician is referring to is the TailorX trial...which is a clinical trial that is trying to get more patients out of the "intermediate" score range. That is, they are trying to determine EXACTLY where the risks of chemo outweigh the benefit. For the Tailor trial, they moved the "intermediate" risk category. So now, if a patient had a score between 11 and 18, FOR THE TRIAL'S PURPOSES, they would be considered "intermediate" risk. What I find curious about CDSC's statement is that her physician mentioned that "the current risk scale would soon be shifting." I would love to know what information the physician is basing that statement. To my knowledge, presently, NO ONE knows ANY preliminary results of the TailorX trial, so I don't know how the physician could make that prediction. However, from time to time, other sisters on other threads mention that their physicians consider a score above "11" intermediate risk. So I am left wondering why these physicians are saying this because my oncologist is firm that unless there is conclusive data supporting a score above "11" is intermediate risk, as far as he's concerned any score below "18" will either only benefit slightly from chemo or NOT at all.
Furthermore, many sisters ask why the Oncotype DX recurrence score was lowered. The answer is NOT that complicated. What the people who designed the trial needed to do was RANDOMLY give chemo to some of the trial participants in the low range (between 11-18) so they could PRECISELY see EXACTLY where the benefit of chemo outweighed the risk. Since TailorX is a blinded trial...we don't know yet if and where the "shift" might take place. Since the Oncotype DX's "intermediate" range is between the dreaded "18-30"....TailorX might "prove" that even MORE "intermediate" range scores are actually in the low range! Meaning, they might find out that people who have scores of 18 or 19 or 20 or even 21...might in fact be in the low range and NOT benefit from chemo! Likewise, Tailor might "prove" that there just might be a benefit to having chemo for those scores. But PRESENTLY, there is NO EVIDENCE WHATSOEVER that tells us that if you have a score BELOW 18, the benefit of chemo outweighs the risk. But also keep in mind this one VERY important piece of information. The Oncotype DX test is NOT as strongly validated for US mucinous sisters and that's why the NCCN guidelines haven't recommended the test yet for us. That doesn't mean that we shouldn't have the test. Notice in my signature that I had the test and I scored a 15 which is EXACTLY the average score for mucinous breast cancer according to folks that make the Oncotype DX test. According to the present Oncotype DX scale, my 15 puts me in the low range of recurrence AND chemo's risks outweigh its benefits for me. Now if I was in the TailorX trial, that 15 score would be considered "intermediate" risk for the sake of the trial and I would be randomly chosen to either receive chemo or not. When the preliminary results of TailorX are released, I should know more conclusively whether or not I made the right decision to defer chemotherapy. Until the results of TailorX are known, a score of 15 is considered low risk.
Now CDSC is really in a pickle because she tells us she's 29 years old. We also know from research that younger sisters, in general respond better to chemotherapy. But from the most recent Japanese study, we are told that neo-adjuvant chemotherapy wasn't as beneficial to the mucinous breast cancer patients.
Soooo...I could only imagine what it was like for the tumor board to make a decision! For sure, it must have been quite a meeting with no consensus!
And now with the decision being thrown back into CDSC's hands...YIKES! What a tough call for CDSC to make!I've been keeping her in my thoughts and prayers like the rest of our sisters!
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