Multifocal IDC, should I have lumpectomy or mastectomy?
I was diagnosed with IDC on 21 May. Biopsy said tumor was about 1.1cm (moderately differentiated, ER+, PR+, Her2-) so the BS discussed a biopsy with me. However before surgery she advised me to have additional tests including an MRI. The MRI found an additional suspicious area (spiculated mass) adjacent to the confirmed tumor so I'm now looking at multifocal disease.This additional area has not been biopsied since the BS said the description and proximity to already diagnosed tumor would be enough to make it highly suspicious. MRI report called it a "satellite lesion."
BS said she would have to remove a considerable chunk to ensure she removes lesions and sufficient margins. She says that I would still be an OK candidate for a lumpectomy and that with the help of plastic surgery, the hollow could be filled in with tissue from the lower part of the breast. I would of course end up with a smaller breast but the other one could be reconstructed to match.
I met with a plastic surgeon yesterday, but he thought immediate reconstruction would not be a good idea unless the BS could guarantee clean margins. Otherwise the reconst work would be in vain since I would likely need a second surgery. I can't imagine that the BS can guarantee clean margins.
I really should have had a lot of questions ready when I met the BS this week and now I'm left wondering a number of things.
Would it be safer for me to have a mastectomy?
Are there any statistics on recurrence in the case of bifocal disease?
If I had a mastectomy, would that mean that I would not need radiation as long as there were clean margins?
Is chemo almost always advised in the case of IDC, even it they don't find it in the lymph nodes?
I'm supposed to have surgery two weeks from tomorrow and feel so confused about arriving at the right decision.
Mary
Comments
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Sounds like my cancer. I had a lumpectomy, then re-exision to get cleaner margins, which we never really got. They ended up taking out tissue the size of a tennis ball. Now I think I would have been wiser to have the mast. If I had had a mast, they said I wouldn't have needed rads. Because I had a lumpectomy, I did do rads - 33 of them. My IDC was no more than 2.1mm into the tissue as far as they knew. They said no chemo. That was a problem as a month later a PET/CT scan showed a lesion in my liver which a recent biopsy showed is bc. I should have done chemo.
My advise to you is the mast. But, whatever you choose, ask for a full body PET/CT scan afterwards to make sure it hasn't already spread. Early detection can save your life.
Good luck to you! This is a tough decision. Only you can make it.
Take care.
Ruth
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I had 1 cm multifocal, first lumpectomy not clear on margins but also had lots of DCIS. I had the recommended mastectomy and radiation because of a positive node, and I wished to have low chance of chest wall recurrence. However I now read that most recommend second lumpectomy attempt with multifocal (don't know about in the presence of extensive DCIS).
It's a tough, tough choice. I'd take my time and get another BS opinion. Sounds too like your current one may have left those questions hanging, so she/he'd be good to visit with again too.
Of course then there is always us, right!
Tender
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Thank you both so much.
Ruth: I'm so sorry to hear about the lesion in your liver. This must have been so hard to deal with after all you'd been through. And if I'm reading 0/1 nodes correctly, your SNB was deceptive too. My BS already implied that they would likely suggest chemo even if all the lymph nodes came back negative as she said sometimes the cancer cells can get sneaky and get by. You said "My IDC was no more than 2.1mm into the tissue as far as they knew." Do you mean the margins were 2.1mm? I already had a PET/CT scan and a separate CT scan as part of the pre-operative screening tests. The only thing found was what they think is uterine fibroids. I had a pelvic u/s to check that on Tuesday. PET/CT scan said "no hypermetabolic activity is noted in regional lymph nodes." That was comforting though the SNB will be the ultimate test. At least I thought that it would be until I read your case.
Hi Tender: Did you know yours was multifocal prior to surgery or are you saying that they removed a 1cm lump, then realized there was DCIS too? Or did the 1 cm encompass the two separate much smaller tumors? From the MRI description there would seem to be some DCIS in my case too, it describes an "area of linear enhancement" extending from the biopsied lesion.
Why would there be a recommendation of a second lumpectomy attempt with multifocal instead of removing all the lesions together?
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My core bx showed IDC and DCIS. Then the lumpectomy (wire guided) showed multifocal IDC with involved margins and lots of DCIS (they said it was extensive DCIS which I believe means more than 25% of the tumor when looking at the big picture. The invasive part was 8mm, and there was a goodly amount in one sentinel node). So I knew it was multifocal only after the lumpectomy.
Multifocal breast cancer itself (invasive cancer arising in multiple sights (at least two) within the same quadrant) can be managed by wide local incision with clear margins (may take a second and at times third lumpectomy) and in years past more often by mastectomy. Every person's situation differs, yet I think it's reasonable to say that surgeons tend towards lumpectomy(s) if possible, so as to save the breast (perhaps too if MRI shows no other involvement elsewhere).
Extensive DCIS however raises it's hand, as when it's in one breast quadrant it's possibly in others. That's why some women with DCIS get a mastectomy: is it going to be found elsewhere and or develop elsewhere. I do hope this surgical dilemma will be helped greatly by genetic tumor analysis: genes which reflect a propensity towards invasion vs no genes which show this propensity. What a gift this will be to those with DCIS.
I hope this helps.
Tender
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Tender, why did you have radiation? I thought that was unusual for someone who had a mastectomy.
I came to a decision today to have a mastecomy with reconstruction.
I spoke again to BS this morning. She said the PS has reservations about doing immediate reconstruction after a lumpecomy that would have removed so much tissue. The BS was concerned that in her effort to keep enough tissue for reconstruction, that it would be more difficult to ensure clean margins. So for both aesthetic reasons and just for peace of mind I've opted for mast w reconst. BS mentioned tram flap. I'm thinking of having immediate reconst at the same time as the mast. She says that having a lumpectomy means I will not need radiation.
Will meet the PS on Tuesday. In the meantime, I just read one short article on tram flaps. The description of the technique both amazed and terrified me.
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Dear Mary,
I know that your head is spinning and I'm sorry that you've been faced with some tricky decisions. I personally think that the mastectomy is a good decision for your peace of mind.
The tram procedure is common, but is not the most advanced option. Please look up the DIEP and GAP procedures. I don't know where you are in NY, but Beth on these boards used a surgeon on Long Island, I think, for her DIEPs. BethNY, are you still here?
The difference in the procedures is that the Tram maintains blood supply to the "flap" (i.e., the harvested fat from the donor site) by cutting and moving the muscle through which the blood vessels pass. This means that you have a loss of muscle function in your abdomen, which some women do not miss and which others do miss. The "perforator flap" surgeries such as the DIEP and GAP remove the overlying fat and pull out the blood vessels which supply the fat by making an incision in the muscle and then using microsurgery with the blood vessels in order to connect them to a blood supply inside the rib cage. No muscle is taken or moved, as in the Latissimus Dorsi flap and the TRAM.
Best of luck with this complicated decision. A delayed reconstruction will basically result in more scarring, but may be the most conservative choice for many women.
Good luck!
Hope M.
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And I forgot to mention that mastectomy does not eliminate the need for radiation if 4 lymph nodes or more are positive, or if there is a large tumor lying close to the chest wall. There may be other reasons, but those are the ones with which I am familiar.
Hope M.
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Mary..
I had a lumpectomy with one positive node., then six. months of chemo, then they found another suspicious area they had missed was also IDC...I was scheuled for rads..but I had a mastectomy..so it was decided I did not need the rads...
This was eight years ago now.. hugs to you..
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I had radiation for two reasons. I had extensive DCIS and these (cancer cells), in addition to the invasive component, still may linger post mastectomy and chemo, That didn't sit too well with me, and I wished to lower my risk of chest wall recurrence further. But too, I had that node with a goodly amount of cancer in it. I read as much as I could, talked with experts in radiation oncology, studied the studies and decided to go ahead, knowing the best that could be said was a "trend towards survival" accompanied radiation therapy. Who knows: no prospective study has ever been completed in the 1-3 nodes. We all make our choices based on our comfort level, and for me this choice worked.
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I also have multifocal IDC with a positive node. I knew there were many tumors because of the MRI they did before surgery. I didn't know I had a positive node till the sentinel node biopsy. Because I had three two subtypes to IDC and a bunch of DCIS and one spot of LCIS, it was recommended I have a mastectomy, with probable chemo. They found one positive node and so I had chemo. Later because of the tumors were only 2mm apart from each other and not three and because I had one tumor close to the chest wall, the radiologist recommended radiation. Deciding to do the radiation was difficult because I had reconstruction with a tissue expander in. I had all of the fills put in before radiation and so far it has held its shape. Time will tell if there are going to be problems with the exchange.In the end, i decided to go all out after this horrible disease. And as many have already posted on this thread, it is an individual choice and we base it on our personal preferences.
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Hi Jess: Thanks for your reply. I suspect I may have some DCIS too as there was mention on the MRI report of an "area of linear enhancement" extending from one of the tumors. It sounds as though there might be DCIS in a short length of duct and then two tumors attached to that.
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Hi Hope: After reading your responses, I read the brief articles here on DIEP and GAP. Since I have enough abdominal tissue to spare, I don't think GAP needs to be considered. Yes, DIEP does sound like a better option than TRAM since they don't take muscle and the recovery time is quicker as a result. But the article says that not all surgeons offer this option and it does sound like a very involved surgery. It says that DIEP for one breast takes about five hours. How long does TRAM take for one breast?
Hi Lisa: Did the second suspicious area show up after you had the chemo completed? That must have been a belt in the gut to have to go through surgery a second time. Glad to hear you are doing well eight years on.
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Hi, Mary- Sorry for the delay in responding. I haven't been on the site lately!
I don't know how long a TRAM takes. I'm sure that there is some variation in the average times depending on your individual anatomy--hopefully someone else can answer?
Hope M.
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Last week I decided in favor of having a unilateral mastectomy and DIEP flap, but this pushes back the schedule which is giving me time to have doubts about my decision. I had a remote consultation with a surgeon in Ireland, who trained at Sloan Kettering. I sent him all my records ahead of time. He felt that doing a mastectomy in my situation was overkill and suggested I get a second opinion. I got an appt with a BS at Sloan Kettering but it's two weeks out and uncomfortably close to my surgery date. I tried to get an appt with a very well respected local BS but would have to wait a month to see her. I wish that I sought out a second opinion before this.
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Aargh! One of my friends reports seeing three top surgeons in NYC, all of whom were very sure that their opinion was correct, and all of whom had slightly different opinions from each other . . . .
I think that the surgical advice you get will vary by the surgeon. You may have to rely on your "gut" and go with what gives you the most sense of peace inside, knowing that there is no "right" answer.
Good luck and I'm sorry for the agonizing choices you have to make.
Hope M.
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HI - my mammogram showed a tumour mass (non-palpable), the accompanying ultrasound showed mirocalcifications in the same breast; biopsy showed tumour was IDC, microcalcifications were benign; then the MRI showed a large suspicious area and a second mass, different quadrant, all in the same breast. Hard decision: lumpectomy, with possible re-excision and radiation depending on the suspicious area and second mass? second round of biopsies to determine what the new mass and suspicious areas are? could I face multiple surgeries? Short answer: I decided to have a mastectomy, got clean margins, and the suspicious area was a 13 cm (yes, big!) area of DCIS, while the second mass the MRI turned up was nothing. It turned out to be the "right" choice, but each step along the way, more information may make you wish you had done something else - you don't know and you can't know for sure, you can only do the best you can with the information you have. The second opinions I got varied widely, it really came down to me. Hang in there.
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Hi Simmonba: the fact that your additional suspicious areas were in a different quadrant made the mast a more reasonable option in your case. I suppose one only really knows if one has made the right decision in retrospect as you never really have the full picture before surgery.
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My experience with having a lumpectomy, chemo and rads: My lumpectomy went great, very little tissue taken, and a small scar that was quickly fading, but, 4 months out of treatment I discovered another lump. BS said mastectomy was the next logical step. Unfortunately, because of rads my reconstruction choices were limited. Wish I knew then what I know now.
Since no one else has posted this, check out the web site www.breastcenter.com
There are a great many before and after pictures, be prepared, they are very graphic. But do note that of these photos, the ones that have immediate reconstruction have much less scarring.
I say, don't rush into surgery. Get your second opinion. Be sure you've made the best decision, as there's no going back!
Good luck
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Mary:
There were several questions you asked that I don't think were answered. I'll try. I 'had' IDC I say "had' because I finished treatment last week.
1. First of all, do you have an oncologist? I hear you talking about the BS and the PS, but where is the ONC in all of this? An Onc develops your overall treatment plan...
2. I had chemo. The tumor was large enough (2.9cm) I had a tumor in my lymph glands. The chemo was done to contain the tumor(s) prior to surgery. Once surgery in done it is harder to get to the tumors. The connections have been cut, so doing chemo prior to surgery, in my case was necessary.
3. I had a Bilat Mast. One side was prophylactic. I chose not to worry about it. And since a total hysterectomy took care of my other organs, I won't worry about them. I do produce estrogen. It is produced by the adrenal glands and by fat.
4. TRAM vs. DIEP. The DIEP procedure is 10-12 hours or so for both breasts.. The TRAM procedure is about 3 hours. TRAM causes you to lose the ability to do a full crunch, you can do a partial one. Other than that, you'll notice very little loss of muscle. They both produce a pretty result. Some are high on one, others on the other. Get a good picture of both, and then decide. I had neither. I had expanders. The surgery was only two hours, and I get to pick the size I want.
5. Radiation. It is done to clean up any cancer cells that are left after surgery. If your margins were clear, and you didn't have any Lymph node involvement, and so you had less than 4 or 5 lymph nodes taken, you may get a pass on radiation. Don't presume you will.
The one thing I've learned in the journey is that you cannot plan. You are not in control and no one else is either. Everyone waits to see what the previous step in the journey has shown. Go with the flow, and don't be overwhelmed. You are here and the people here can help. Just take it a step at a time. Good luck, and know that many of us are doing well, and you will too. JUDY
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Glostagirl: Thanks for that link, I hadn't seen those photos. What kind of reconstruction did you have?
Hi Judy: Congratulations on finishing your treatment. That must be a relief.
No, I don't have an oncologist yet. I asked the BS about that and she said that typically the patient doesn't meet the oncologist until after surgery when they have a fuller picture of what's going on. She said at this stage until they get the final path results and the results of the SNB, the picture is incomplete.
I realize that the DIEP procedure takes longer than TRAM flap, but the recovery is typically faster and there are likely to be fewer complications in the abdominal area. I have a concern about losing abdominal strenght because of a prior medical condition (transverse myelitis).
I do know there is still a possibility that I wouldn need radiation if I have a mast.
It's hard to go with the flow
Trying my best to do so. -
Mary:
Thanks for the good words.
My BS would not do anything until the onc said it was OK to do so, I could never have had chemo first if the surgeon decided to operate immediately. I'm not saying you need chemo first, but I did, and there was no way the Onc was waiting for any results. The one thing you'll find out about cancer is that there is no one answer for everyone. We are all different, need different treatments, etc. This operative word here is "typical".. I learned on this journey that there is no typical...
JUDY.
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After agonizing about this for a long time, I've finally decided to have a lumpectomy instead of mastectomy. I had been going back and forth with the original breast surgeon and even had a surgery date for mastectomy with immediate reconstruction with DIEP flap. I met with two other surgeons who both came down in favor of lumpectomy. One of the surgeons was at Sloan-Kettering and although she started out by saying I had two options, she then just went on to discuss lumpectomy. The final surgeon I met this week was less dogmatic and said sometimes, a mastectomy seemed like the obvious choice because of family history or the patient was adamant that what they wanted, but that was not so in my case.
I understand that I may need further surgery if there aren't clean margins. But BS seems confident that she can excise all during lumpectomy and not leave me too disfigured. She did not make a big deal of the fact that my disease is multifocal. Since this will be only my second ever visit to a hospital and first surgery, the idea of the longer surgery was really scaring me. Also I wasn't entirely reconciled to the idea of a mastectomy. This way I won't have regrets.
So I'm finally having surgery on Monday morning.
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I have been reading all your comments and I am terrified to death. Is there no other treatment option besides surgery??? I was diagnosed with DCIS and IDC in my left breast. A recent MRI showed two suspicious areas in the right breast. I am scheduled for another biopsy this Monday. The doctor already said a lumpectomy would be disfurging as they do not know the extent of the cancer. The pathology report from biopsy for the DCIS and IDC showed one area as 4mm and the other as 5mm. That sure doesn't appear to be very big.
I don't think I can go through with a mastectomy and would like to try chemotherapy and maybe radiation. Does anyone know of any non-surgical treatment options for this disease. I am also willing to participate in a clinical trial, provided one exists and I qualify.I don't know how you ladies find the strength to make these decisions. I can't eat or sleep and I am so overwhelmed, scared, and stressed out.
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Hi Tammy:
I too was told by the original BS that a lumpectomy would be disfiguring and I agreed to a mastectomy with reconstruction. Then I spoke by phone to a surgeon in Ireland and he said even though I appeared to have multifocal disease he felt that a lumpectomy would be the better choice. He referred me to a BS at Sloan-Kettering who agreed with that and I also went to see an experienced local surgeon. I went with the latter and had the lumpectomy two weeks ago. I can definitely say the surgery was NOT disfiguring. On top of that the path report did not confirm that there was a second tumor. They did find cancer in 1/6 lymph nodes so this means I will need treatment. If I had the mast, that would have delayed chemo. So having a lumpectomy was definitely the best choice for me.
TammyMarie, could you get a second opinion?
Waiting for the MRI-guided biopsies was probably the worst time for me. I had to wait for three weeks due mostly to delay from insurance company in authorizing it.
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Dear TammyMarie,
We like to say here, "Take a deep breath." It is overwhelming to be diagnosed with breast cancer and everything starts moving so quickly. Take your time and get another opinion, if you'd like. I think that most docs will try to get you in quickly for just a second opinion, once you've already got the diagnosis. You may want to find a breast center, if you are not already with one.
Don't be misled by the measurements in the pathology of the biopsy. The largest sample that they can get with the needle going into the tumor would basically be the same as the size of the needle's hollow interior. Those measurements are not equal to the size of your IDC or DCIS. Hopefully the scans have some better estimates for you.
Many women now have chemo before surgery. It's called "neoadjuvant" treatment. Definitely look into this, as it can shrink the tumor and reduce the amount that has to be taken surgically.
Now that I am 6 years out from my own mastectomy, and having done two reconstructions, I am just calmer about my breasts. They aren't me; I don't walk or eat with them. I wish that I were whole physically, but I'm nowhere near as emotional about having lost one of my breasts as I was even three years ago. Without minimizing what you are feeling right now--it is totally legitimate--I hope that you can take heart that this time will eventually pass and you will come out on the other side.
Good luck with your decisions,
Hope M.
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bump
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I just got the path results from a lumpectomy in my right breast. The overall area of diffuse pathology was large; 10 cm in the longest diection. Though it was dcis, it contained 'innumerable' points of invasive cancer, idc. So a large chunk was taken out, and the BS said she didn't feel good about doing the surgery as she greeted me before the surgery.
BUT: she saved the nipple, got very good margins, and when I have my regular bra on, both breasts fill it and look the same. Part of this is because the affected area was in the outer gradrant, i am guessing. And no node involvement, btw.
One major factor for me is that I am nearly seventy; i was hardly affected by the lumpectomy and a mastectomy plus reconstruction was said to be much more demanding.
Both my BS and my PS were against the lumpectomy on the grounds that it would be disfiguring. If all the stories I heard about reconstruction were rosy, I might have felt differently. And there are many mixtures of priorities. I have my own nipple, my old cleavage and the same look in a bra. If i were younger, i might find that far from enough. -
Hi Tarry: good to hear that you have no node involvement. It's hard to make a decision like this when you were obviously getting mixed signals about which would be the best option. Prior to my lumpectomy, one of the oncs I saw said if possible always best to start with a lumpectomy and then if that's not enough to go back and do a mastectomy.
Hope you're recovering well.
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Hi Mary. I see you posted this many years ago. I am in the same predicament. I have multifocal invasive ductal carcinoma er positive pr positive her2 negative. 3 tumors 1.9 at largest. My surgeon feels lumpectomy. My oncologist feels a bilateral mx. What are your thoughts now that you have been through it?
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Hey DM39 - What did you end up choosing? I'm trying to make the decision now, too...
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