Mar 28, 2014 11:45PM KJR1964 wrote:
That worked well ...nobody has this...OK ...back to Dr Google...
Posted on: Mar 28, 2014 07:19PM
Sorry not quite sure what forum to go to...Just been diagnosed with both 2.4cm IDC and 4mm ILC Stage II 4cm apart from each other but not sure of spread...Surgery on 15th of April and have nominated for MX with reconstruction....TE's (just been reading there)... Anyway just wanted to know what others have done in this situation.....Feeling slightly confused...Appointment was yesterday and had a complete overload of information but not sure if I have made the right choice... I know its my decision but reading about ILC I think it is more of a possibility that they wont get it all with a lumpectomy...
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Mar 28, 2014 11:45PM KJR1964 wrote:
That worked well ...nobody has this...OK ...back to Dr Google...
Mar 29, 2014 01:16AM Annette47 wrote:
I had a friend who had it, but I don't think she comes on this site. She had a mix of IDC, ILC, DCIS and LCIS spread across both breasts (as she put it they were full of "bad stuff") and elected to have (but I'm not not sure if she was given a choice) a BMX. Her margins were clear and there was no node involvement, so she is now on Tamoxifen (pre-menopausal) but did not need radiation of chemo.
Mar 29, 2014 12:42PM KJR1964 wrote:
Thanks Annette...Thought there would be a few more ladies around here with same DX ... sounds promising for your friend and quite interesting that she had no chemo or radiation... Wonder why?
Mar 29, 2014 12:55PM Annette47 wrote:
My understanding was that the areas weren't all that big, and with clean margins and no node involvement it was thought that the surgery got all of the cancer(s) and that any possible benefits of radiation or chemo (in the unlikely event of a stray cell escaping) were outweighed by the possible side effects. It's not unusual not to need radiation and/or chemo for early stage cancers treated by mastectomy. She's coming up on 3 years out and doing well so far.
Mar 30, 2014 03:27AM Ridley wrote:
I had multiple areas of IDC and ILC, as well as DCIS and LCIS in one side and just DCIS in the other. Ended up having bilat mastectomies and reconstruction. I didn't have radiation because the margins were all fine, and there was no spread to my lymph nodes. I didn't have chemo either because all of the cancer was grade 1 except for a teeny area removed during my mastectomies. My oncotype came back with quite a low score. I am on tamoxifen for probably 10 years, if I can hack it.
Apr 1, 2014 11:22PM - edited Apr 1, 2014 11:23PM by KJR1964
Sorry Ridley for not getting back... And thanks so much for your reply... I have a major dilemma at the moment.. I have opted for only the MX of the affected breast and I don't know about the risk of the right... I opted out of the MRI and wished I had of had it.. I think that after everything is all over and I am better from the upcoming surgery I will just ask for one for peace of mind.. I suppose it all depend on the surgery and I know that it is a waiting game but I just have so many questions regarding the double DX's .. :)
Apr 4, 2014 02:35AM dlb823 wrote:
Karen, my primary lesion was a 1.5 cm mix of side by side ILC and IDC. My first surgeon did a lumpectomy, but I later found out that she'd missed 3 smaller lesions, which necessitated a mx. I opted for unilateral (left, like you) and haven't regretted it; but the type of recon you choose can factor in. Diep was recommended for me, and I only had enough tummy tissue for one side.
Multifocal or multicentric disease is very common w/ILC, and one of my lesions was too small to show up on MRI. So, as tough as it can be to wrap our heads around choosing a mx, it's probably the wisest and most prudent way to go.
A few more details on my bio page about my experience if you're interested. BIG HUGS to you. Deanna
Apr 6, 2014 04:48PM nsttours wrote:
I was diagnosed with stage 1 BC, ILC (2 cm) and DCIS (4 cm) with a another area of precancerous cells on the right breast early March 2014 after a lumpectomy 2/28. It was a lot of activity in such a small area of tissue removed. Even though the margins were clear, I decided on a bilateral mastectomy, performed March 24, 2014. None of the cancer was seen via mammogram or mri. Mammogram had seem microcalcifications and hyperplasia, which led to 2 biopsies, neither of which found any cancer. My lymph nodes biopsied were clear. I also have Multiple Sclerosis. Mainly I am avoided whatever I have to (chemo, radiation, etc) in order to maintain a good auto immune system and lower my risk factors. Almost two weeks after surgery, I am feeling very sad, but clear it was the right choice for me. My incisions are across the midbreast point and continue in a slight curve upward below the armpit area, since I had extra skin there. I have extra heavy numbness in each armpit and some numbness and tightness across the entire chest. I am not going to have reconstruction or implants, as I feel it could affect my immune system and my overall health. I did take Prempro for over a year and another year of hormone replacement therapy. My surgeon explained that HRT and Prempro in particular increase the risk of breast cancer anytime in my life, even if I stop HRT therapy. As a matter of fact, there are so many women who have taken Prempro who did end up with breast cancer and some who died...also, for over ten years, women have been filing lawsuits against Pfizer for the affects of this and other similar HRT drugs that have proven to cause breast cancer. Based on the fact that I took the HRT for over the last 2 years, that none of my cancer was seen via mammogram or mri, and my other risk factors, I decided not to play roulette with my health and have the bilateral mastectomy. Once I get the last two drain tubes removed next week, I will see the medical oncologist. He had previously recommended I take estrogen lowering medication. However, studies show that high levels of estrogen help prevent and ease the symptoms of MS. So, I'm not convinced that lowering my estrogen now would be the highest benefit for my health overall. Also, the labs on my breasts after mastectomy did not find any cancer, but did report microcalcifications. So, there is no evidence of cancer at this time, except what was removed in the lumpectomy in February. My surgeon explained that the lab only does a certain number of slices of the breasts that were removed, that it is not all inclusive, and the areas between slices are unseen. I'll never have to have another mammogram again. I'll never worry about what they aren't able to see. My body is physically depressed from after surgery and recovery phase on top of pain meds. I know I'll feel clearer once I can clear all the meds out of my body and get back to fully functioning. I took my first shower today and had to hang my head low and to the side to be able to wash my hair, but I am able to raise my arms up a little more without difficulty and pain. Warm wishes for all who are enduring these decisions and experiences.
Apr 7, 2014 05:09AM Trillion wrote:
I was diagnosed in 2009 with a 1.9mm mixed (ductal/lobular) lesion plus some DCIS in my left boob and had a mastectomy (my boob wasn't big enough for a lumpectomy). The surgeon wanted to get clear margins and this involved taking quite a lot of tissue so there wouldn't have been any point in having anything but a mastectomy in my case.
If you're not sure what you want to do you could still discuss it with your surgeon or breast care nurse if you have one. Listen to their advice, but trust your own instincts and do what you'll be most comfortable with.
Apr 7, 2014 10:12PM KJR1964 wrote:
Sorry I haven't answered everyone back... Have had a rough few days... A night in hospital (presented myself with chest pains to emergency and proceeded with a stay overnight, every known test for heart and blood clots, as I told them about my impending surgery, nothing was left to do...all clear and ready for surgery... I have put it down to extreme anxiety...not much we can do about that)... Any way thank you all for you feed back...dlb823...nsttours and trillon... I have taken everything in and appreciate you comments, thoughts and advice... I know the best thing to do is what I am about to undertake and will go forward knowing that I will beat this.. Life is too short...(waffling now...but had some horrible news today that my Cousin who is the same age as me has just had a massive brain haemorage and is not expected to live) I feel I have been dealt the ace and she the joker... We know that with proper treatment will will get through it but for others life ends so quickly and unexpectantly that our worries are minor.. I know they are not to everyone but it makes you think at least we have choices to make us better... for some there is no choice and life ends way too easy...
trillon: thanks for sharing your experience... I hope you are feeling better.. I don't know what you are feeling but I am sure I will find out shortly... I will follow you and try and keep up to date, but as you know you have your good days and bad... I love being here and am very anxious to know what lies before me and want to just tackle it and get on with my life and live it to the fullest... I turn 50 in May and OH BOY am I going to enjoy it... Thanks again everyone for your replies I will let you know how I get on in a week or two...
May 10, 2014 03:40PM B_kicks_C wrote:
Post surgery they added my second DX...went from 4 tumors HER2 neg to 20+ Tumors of a mixed bag of ILC and IDC some HER2 pos but all PR and ER pos...some tumors showed reaction to chemo, but not the HER2 pos...so I am back in for another run of chemo. I have an 17 page pathology report one of those that when you try to read it in small pieces. I am thankful for getting this extra DX at surgery and not when I was still trying to figure out life with the initial DX and chemo...I may have been too overwhelmed and I kinda like the idea of more chemo to kill off even more of the suckers that are lurking around my body....I wanna kill as many of those suckers the Docs will give me the opportunity too...I was DX with cardiomyopathy from the first chemo rounds....so I'm hoping to get as much Herceptin my body can take.
Jun 4, 2014 03:19AM - edited Jun 4, 2014 03:20AM by cbm
Sorry; I don't come here that often anymore and just saw your post today. In 2008 I had a bilateral mx for IDC/ILC/DCIS/LCIS just under 2cm in left breast and one large lymph node. It was all in one spot inside an existing fibroadenoma. Triple positive, Stage 2 Grade2, and I had dd AC/TH, then another year of Herceptin, then a year of Neratinib trial, and almost 5 years of Femara. I had the Oncotype test (after all of that) and came up with a 9.
I will say that the docs who saw the path report were impressed and suggested that it was an uglier than normal tumor. It didn't seem that pushy to me, and the Her2 element, though positive, was barely over the line. I had the bilateral surgery because of the ILC.
I did not have reconstruction for a lot of reasons; I have no regrets about that.
I was 56 at diagnosis and I'm 62 now.
I hope this helps--I assumed the mixed bag was not that uncommon, as Susan Love's book was my reference source, and she mentioned that it wasn't really better or worse.
Good luck and peace on your journey.
Jun 4, 2014 03:33AM aviva5675 wrote:
Started out with dcis in one area, ended up having lx and reduction on both sides. Tissue taken from both sides found invasives of various types on BOTH sides, including left which previously hadnt even been involved. Went back 10 days later for bmx, and snb. Nodes were clear, no radiation, oncotype score of 2, so no chemo. The dcis was triple positive, the rest er/pr positive HEr2 negative...
Even tho the small tubular tumor on the left could have been removed with lx, I chose the bmx, as I dont want to deal with it further, or worry year after year.
Jun 10, 2014 06:14AM Meow13 wrote:
I had 1cm IDC and 1cm ILC 4 cm apart was talked into Mastectomy on left side. If I knew then reconstruction vis DIEP would look this good I would not have been so down. I'm on year #3, so far so good.
My oncodx was 34, but chose no to chemo.
Aug 24, 2014 07:40PM - edited Aug 24, 2014 09:40PM by Traveltext
Just found this thread and since I was diagnosed with IBC in February 2014 thought I'd tell of my experience to date.
After my ultrasound discovered invasive ductile cancer (nipple plus two lymphs) I pretty soon developed IBC so my onc decided that neoadjuvant treatment was the way to go. I immediately started chemo and had three treatments of FEC followed by three treatments of docetaxel. This worked well, produced virtually no side effects, and it prepared me well for the mastectomy which I had a couple of weeks ago.
After the surgery (all breast tissue plus 23 nodes removed ) I was informed that the pathology showed that while the IBC cancer had gone the IDC was still positive for cancer. Fortunately only 2 of the 23 nodes were positive, so it appears that the tumors have been beaten.
Now I'm booked in for rads in a couple of weeks and this should ensure a full recovery from the current bout.
The main difference with other people in this thread is that I'm a guy.
Aug 26, 2014 03:04AM LindaVS wrote:
Glad to find this site... I was diagnosed in July 2014 with bilateral breast cancer, 2 different kinds of breast cancer with 4 different sub-types. I have invasive ductal carcnioma, invasive tubular carcinoma, DCIS, and invasive lobular carcinoma. In early May I had my yearly breast exam and breast mammograms, which show such density that they called to do an ultrasound on the right breast. On ultrasound they found two vague areas of distortion that the radiology doctor felt where suspicious for breast cancer. I later had 3 areas biopsied with about 15 samples taken which came back as positive for DCIS and invasive lobular carcinoma. Because of more than one kind of cancer and a very strong family history of breast cancer and other cancers, and several nodules in my right lung, I requested a MRI to help in my final decision for breast treatment. The lung nodules appeared benign, but the MRI showed a small pea-size cancer in the left breast. This confirmed my decision to have a bilateral mastectomy with reconstruction. My surgery was July 3, 2014, was a nipple sparing double mastectomy with insertion of tissue expanders. On pathology it turned out that the left breast, that no one had been looking at, was the more serious and largest of my cancer tumors. My diagnoses were left breast invasive ductal carcinoma 1.2 X 0.8 X 0.6 cm, Nottingham grade 1 (1 of 3) and DCIS, and multiple microscopic foci; right breast revealed multiple nodules from 0.5 X 0.1 cm, multiple 0.5 X 0.1 X <0.1 cm, and wereDCIS, invasive tubular and invasive lobular carcinoma. Based on the largest tumor, they called me a Stage 1, and I was started on anastrazole daily probably for at least 5 years. In my search for information regarding multiple kinds of breast cancer with multiple sub-types I have found very little long-term information. One study suggested that they need to access the "tumor load" based on adding them together, which would give a patient a higher stage #. I'm concerned that my risk of recurrence, even with negative margins and 7 negative lymph nodes is higher based on the many tumors and types. I am still in the healing stages now 7 1/2 weeks after surgery and a tentative surgical date for replacement of the expanders with permanent implants is scheduled for Dec 30. Anyone have any more information based on these results?
Aug 26, 2014 09:17AM LindaVS wrote:
To TravelText.. Thanks for sharing your story. I am so sorry to hear of your diagnosis, but hope that with your chemo, surgery, and radiation, that you will soon be past this disease. Hope that your story will help other men to seek medical advice if they notice any symptoms or problems. May I ask if you had symptoms or lumps? Or was your's found on physical examination. I think knowing more about what men should look for would help others find out early in their disease. We have an extremely strong family history of cancer of all types in our family and need to be aware of possible signs. My tumors were only seen in one breast, but never felt on physical examination, and it took an MRI to see any disease in the other breast. Good luck to you.
Aug 26, 2014 10:14AM Traveltext wrote:
What a story you have Linda. At least you are getting good early treatment.
I felt some lumps in my left breast ten years ago and a mammogram and ultrasound declared them negative for tumors. Earlier this year a lump appeared again under the nipple so I saw my doc and the action started pretty quickly once an ultrasound and biopsy picked up the DIC. After the biopsy the breast inflammation went crazy, so I was pleased when the chemo pretty soon got it well under control.
The men in your family should get into the habit of checking themselves. Not too hard for a guy really compared to your experience of failing to detect the cancer in your left breast.
Is any radiation recommended for you?
Aug 26, 2014 11:01AM LindaVS wrote:
My surgery left me with clear margins and no positive lymph nodes, so they said there is nothing to radiate. We discussed traditional chemotherapy versus the aromatase inhibitor treatment and they recommended the latter. My cancers are all considered early stage so they felt chemotherapy was too aggressive. I hope they are right. The drug I am on will be hard on my bones, so they may have to add Fosamax later on in my treatment.
I will mention the self exams to my brothers... They all work together in a family-owned store. We lost one brother to ALS 6 years ago.
Aug 28, 2014 05:18AM LindaVS wrote:
I am interested in hearing more of your experience.. I have ILC, ITC, and IDC, in both breasts. I had bilateral mastectomy on July 3, 2014. I'm concerned that I may need more aggressive therapy even though I have clear margins and negative lymph nodes. The chances of 3 kinds of breast cancer and 4 different sub-types seems to be unheard of, and makes me feel that my stage is much higher than the Stage 1 I was given...
Aug 28, 2014 07:48AM Traveltext wrote:
Linda, I think your treatment is appropriate. The fact that you have no node involvement is a great sign. Staging of cancers relates to each type, not a cumulative total.
Perhaps you could have radiation treatment to follow the mastectomy and it may that you will be prescribed Tamoxifen for five years.
In any case, you are on a familiar path and should recover fully. Are you happy with your doctors?
Aug 28, 2014 11:07AM LindaVS wrote:
I am on anastrazole for at least the next 5 years, There is nothing to radiate, but they did discuss standard chemotherapy. In my research on line, it says that having more than one kind of cancer, and especially if it is in both breasts increases your chance of it recurring to 35-40%, rather than the 11-12% they are saying it is using just my largest tumor. I was told by the breast specialist that "no one" gets 2 kinds of breast cancer.. I did, in fact I got 3 kinds and 4 different sub-types. I have corresponded with the American Cancer Association and they do not have any information to share at all. I have a great plastic surgeon who is in charge of my case right now, and my oncologist is a seasoned veteran, so I just want to make sure that chemotherapy isn't a smarter choice than the aromatase inhibitor therapy I am taking. I can't use Tamoxifen, which my Mom and her sister both took for 5 years each, because of other medications I take.
Sep 3, 2014 01:54AM cbm wrote:
Hi, Linda. One thing you might consider is an Oncotype Dx test. Even though I had already completed treatment and had one positive lymph node, my insurance covered it. The process (if I understand this correctly) takes tumor samples from all over the field, and then scrambles them looking for different markers and characteristics. I think this tells you what the content means, and is less about the presentation of your tumor(s). Because the test is using material from all over the field, and not just one place, you get a broader picture, if that makes sense. (And if it doesn't, someone please correct me). From reading exhaustively about different indicators, I really wasn't able to assess the likelihood of all the different cancer futures I was able to imagine, given how unusual my tumor and oversized lymph were. My doctors were much more concerned than I was.
My Oncotype score was a 9, very low, weird tumor or not. So, what I immediately jumped to thinking was that my very odd tumor had stuff in it that hadn't been seen or assessed in the Oncotype range. You can always find ways to make yourself nuts, and I am particularly adept at that.
For what it's worth, my first p.a. told me that mixed and multifocal tumors are not that rare, she had come from a big NIH hospital and said they see them.
Sep 4, 2014 09:43PM Gigi_of2 wrote:
I just got diagnosed with the same on aug 14. Don't know any treatment plan as of yet. Had a lumpectomy on the14th after telling my dr that is want I wanted. Lump was over 5cm. Found it when it was smaller than a M&M. 4 mammos 2 US later they still couldn't see anything. Have just finished CXR bone scan CT MRI & MUGA. Had BRCA1 & 2 testing done. Also looking at being TN. Dont know anything else to tell ya. Haven't made any other decisions just know I have to have chemo. Got my faith in God & I'm going to let Him guide me through this.
Sep 5, 2014 08:19AM LindaVS wrote:
At this week's visit I met with a genetics counselor and had blood drawn for cancer markers in my DNA. Also discussed my concerns over being at a higher risk of recurrence due to my 3 different kinds of breast cancer. I'm hoping the blood tests will perhaps show some cause for all of these. For now they are just going to continue anastrazole treatment and regular followup appointments.
Gigi_of2 for me the decision to have a double mastectomy, even before they saw anything at all in the 2nd breast, was based on a very high incidence of breast cancer in my family and not wanting to go through all of this a second time. Luckily I stuck to my guns, because that turned out to be the more aggressive cancer. I'm told I am a Stage I based on the early stage of all my tumors, negative lymph nodes, and clear margins. There is nothing left to radiate and they feel chemo would do more harm than good at this time. You're right, having faith helps a lot, also a good support system. I would have really struggled through recovery from my surgery if my son who is an EMT hadn't been around to take care of dressings, drainage tubes, and encouragement. Good luck to you.
Sep 14, 2014 06:28AM fire-n-ice wrote:
KJR, I have the same, mixed and how ironic, same breast. I am sorry I haven't been on much or I would have seen your post, I am sorry. I have just been running as if I were on "fire." As my mom had BC I immediately chose BMX, just didn't want to go through this a couple years down the road. If I had chosen the lumpectomy they would have missed the IDC. I have ILC in lower quadrant outside and IDC in upper quadrant inside. BS says he would have found it, but it would have been a day/two and would have put me back as to tests, etc., and w/out those complications I still have not started my chemo cocktails. I have a power port now, have had blood sent off for BRCA, have had a bone density scan [not good] a CT scan [ok] and was to start chemo last Wednesday, but thanks to the bone scan they put it off until after an MRI on Monday. The bone scan showed a small spot on my knee so here we go. My MO says she has never seen it jump that far in her career, but, anyway will be able to start chemo after this hopefully. I would never have thought it possible that I would have a ton of depression missing chemo, LOL, but I do. Seems unexpected things keep popping up. I dread chemo, BUT lets get this show on the road already. Much luck KJR, will be saying prayers for you and my other "family."
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