Received DCIS Diagnosis - IT JUST GOT WORSE - Comments Invited
Comments
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Hi BlairK---As you may remember I had my BMX with TE's one day prior to your wife's procedure. I was only able to get one drain out so far but have another appt with the PS next Friday. I am hoping for more to be removed--they are not really that bad but it they do look 'funny' underneath clothing.
My BS will not see me or discuss the details of my final path report until all the drains are removed too. I do know that the sentinel nodes were clear and there weren't any surprises otherwise. I did ask why she didn't want to see me until the drains were all removed and the reply was because they wanted to examine the breasts without anything in the way.
all in all, except for my extreme fatigue, I feel like I have healed faily quickly. Good luck with Mrs. BlairK! OH...one more thing....I have had two showers at home....both exhausted me and were hardly worth it. I find sponge bathing and washing my hair in the deep kitchen sink to be good enough for now. It is amazing how clean hair can make a woman feel pretty again.
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I was able to shower also, and I agree with luv2knit, it was a lot of work, exhausting, and not worth it. I covered bandages and incisions with Press n seal wrap and then taped around it. A friend gave me the advice and it worked great.
Regarding hair-I ordered a tray thing off of amazon, around $15 I think. It goes around my neck and then over the kitchen sink. I sat on a chair in front of the sink with the tray thing and my husband washed my hair. I tried bending over but always felt like there was pressure and pulling. I have to admit, it was pretty nice! I could then blow it dry, but could not style well for two weeks at least.
Treatment-I had IDC, less than a cm, no nodes....every doc I met with, including a radiation oncologist, said no radiation since I chose to have the mastectomy.
Glad to hear all is going well!
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glad your wife's surgery is over! I was able to shower after surgery....wasn't easy to wash my own hair but I was determined! I also did my own drains after the first few days. I felt better taking charge of myself as soon as I could. Hoping you get good news after your meeting with the bs. I did need rads after my mast. After a mast radiation is a walk in the park! Rads made me very tired but my skin did very well. I was told Tamoxifen was not needed as I did the bi-lat. My med onc said I would hate the SE's more than any good it would do. I had all DCIS and was 39. HTH.
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Hi Blair,
I don't think I've commented on your thread before, but I've been following it. Just wanted to say I'm glad your wife is doing as well as she is, and that she's got such a supportive partner in you!
I am a little surprised at those surgeons who don't want to discuss final path til drains are out. My surgeon called me as soon as path results came in - in my case, it was great news confirming the pure DCIS diagnosis, negative nodes, and clean (though thin) margins.
One question to ask the surgeon is whether the pectoral muscle fascia was removed during surgery. Perhaps someone else can weigh in with some articles or studies, but from what I understand removing the fascia (a thin membrane covering the muscle) is a good thing, particularly if the margins against the chest wall are thin/small. That was the case for me: I was a 'gray area' case for radiation due to a <.1cm chest wall margin, but because my surgeon removed the fascia, oncologists felt more comfortable saying I could forego radiation.
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Interesting Sunshine - I have a < 2 mm margin at the chest wall. My BS says he removed the pec fascia and doesn't think I need radiation, but is going to consult with the RO (I am also getting a second opinion to be safe).
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Dear jbennett38 - Thank you for your post. I am glad you are doing well. Blair
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Dear iLUV2knit - I am glad your surgery went well and that you are doing well. Since I am still the one emptying out the two remaining drains and measuring them - they are each about 10 ml or so. I don't know if that is good enough for the Plastic Surgeon to remove them tomorrow. Will keep you posted and I look forward to hearing from you and your conitnued recovery.
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Dear fluffqueen01 - My wife continues to take sponge baths. Her sister-in-law washed her hair yesterday. My wife somehow has a lot of energy. But also gets pain although I don't know because she never complains. Will keep you posted.
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Dear mom3band1g - We have been told that it is 90 percent that my wife will not need radiation. We will find out Thursday.
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Dear sunshinegal - Thank you for the post. I will be sure to ask about chest fascia. I had wanted the Breast Surgeon to do the MRI of both breasts for the purposes of determining in the first breast (right breast) diagnosed with DCIS how close the DCIS was to the chest wall. But she only did the MRI on the left breast which appeared normal on the mammogram and abnormal on the MRI. Thank god she at least did that as DCIS was discovered in the second breast (left breast) leading to the double mastectomy. I will keep everybody posted on the meeting with the Breast Surgeon.
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My wife has had all of the surgical drains removed now. This evening she will take a shower and is looking forward to that. Thursday is the Breast Surgeon and final pathology report.
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Oh BlairK .....how nice that Mrs.BlairK has the drains out!! I have my doc appt tomorrow but am thinking I will only be getting rid of one drain with two remaining. I still put out quite a bit of fluid in two of them. I am not sure why I am so fluidy but I guess it helps with healing to keep it draining.....they are a bit painful --it is like I can feel them poking into the tissue expanders. I am still popping pain meds. I am ready to just be done with the whole thing.
Has your wife had a fill of her expanders yet?? Maybe she doesn't have the expanders with the gummy implants....?? I haven't had any fills yet but hear that causes muscle spasms. goodie.
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Dear iLUV2knit - I am glad you are doing well. My wife has gummy implants which DO NOT require tissue expanders. She felt OK enough to switch from PERCOCET to tylenol. We had our meeting with the Breat Surgeon this morning and the final pathology report. Unfortunately it is not all good news. I will lay out details in following post. We also went again to the Plastic Surgeon so that is making progress. Read next post for the details of the current status of my wife.
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UPDATE - Final Pathology Report. Unfortunately it is not all good news. The left (second) breast was all DCIS So the left breast was Stage 0 and all DCIS with clean surgical margins. The not so good news was in the right (first) breast. First of all the right breast has 3 points of invasion so it is now Stage 1. The size of the invasions was (1) less than 1 mm, (2) 1 mm and (3) 3.5 mm. The grade on the right breast went from 2 - medium to 3 - high. The distance from the closest margin is 1.5 mm. The distance from the closest margin on the left breast is 16 mm. And the right breast is HER2/neu positive and high with the level being 5.0. The Breast Surgeon has referred us to an Oncologist and we have an appointment on Monday. The Breast Surgeon believes the following - first of all radiation is not necessary but we can visit a second oncologist a Radiation Oncologist to get a second opinion. I was very confused by the margins and the meaning because I am reading about the need for margins of 3 cm (not mm). But maybe this is for a lumpectomy and not a mastectomy. The second thing the Breast Surgeon believes is the need for Herceptin and chemotherapy because of the HER2 positive. She said Herceptin is never given alone and is always given in conjunction with chemotherapy. The Breast Surgeon believes that Tamoxifen will not be necessary but another related drug called Arimidex will be used. Again the cancer was ER positive and PR negative on both sides. However the final opinion will be Monday with the Medical Oncologist. I have several questions for those who care to post a reply. (1) What do you think of the margins and the opinion that radiation is NOT NECESSARY. (2) What do you think of the Herceptin combined with chemotherapy. (3) What has been your experience with Arimidex. Even though I have read and read and posted and posted I feel blindsided by the Final Pathology Report and today's doctor visit. Finally - the Breast Surgeon said that reoccurence rates in her opinion are "low" or about 5 percent and that survival rates are "in the 90s". Thank you in advance for your posts and replies. I am still going ahead with my business trip to Asia on Tuesday. Any additional treatments cannot begin until early December which is 6 weeks from the surgery date.
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My pathology was very similar to your wife's ER+ PR- HER2+, IDC DCIS right breast. I had one thin surface margin (5mm) close to the skin and scar line. I knew the instant I heard HER2+ that I would be going through chemo, it is very rare that Herceptin is offered without chemo (I have only heard of a few instances on this board). My chemo was Taxotere and Cytoxan x4 with one year of Herceptin. I choose not to have radiation. The chemo was doable...losing my hair was the worst part for me. Side effects (for me) were flu like body aches, muscle weakness, constipation/diarrhea, weight gain, neuropathy in feet/toes and some bone pain. The SE's usually hit day three after the infusion and lasted 2-5 days. My only SE's from Herceptin were slight head ache if the drip was to fast, runny nose. Best wishes to you and your wife as she makes her treatment decisions.
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BlairK, I am sorry to hear the path report contained these complexities. I would also feel blindsided. that is the most difficult part of breast cancer - the diagnosis can change so rapidly.
However, good news is that the invasive areas are very, very small. Your wife is very fortunate to have stopped this aggressive cancer at such an early moment. This is why mammography and regular examinations can really pay off.
yes, I think she needs Herceptin (there is an interesting book about Herceptin, called HER-2 which I want to read but is not available in my library right now). What is good is that herceptin is very effective and side effects are low. I cannot guess at radiation. 1.5mm is considered a very narrow margin, so the expert radiation oncologist have to decide.
You did not mention the lymph node study. I assume that was negative?
I am sorry to hear that there were invasive areas but am very happy that you and your wife made the decision to do BMX. Her prognosis is very good from all that I have learned about this disease.
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Dear o2bhealthy and beacon800 - Thank you for the posts. I forgot to mention that my wife had 1 sentinel node removed on each side and each side was negative - clear of cancer. I will wait for additional post replies on the final pathology report and of course Monday visit to Oncologist but it seems Herceptin and chemotherapy are highly likely. It sounds like my wife and I should definitely visit the radiation oncologist to get a second opinion on whether or not radiation is necessary. I hope I get a lot of post replies to my post on the final pathology report. I think the biggest thing I am experience as the husband is it sure is a big roller coaster ride. I felt pretty bad a few hours ago after leaving the Breast Surgeon's office but having got at least these two posts I feel better. I will feel better as I get more posts, explanations and of course when we see the medical Oncologist on Monday. Both the Breast Surgeon and the Plastic Surgeon said I can make my business trip to China and Hong Kong next week. My wife can't have any additional treatment until early December which is six weeks from the date of the BMX. Thanks a lot.
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BlairK,
I am sorry the path results are more complicated and the likely treatment more extensive than you and your wife would have desired, but the prognosis still looks good.
Regarding question "(1) What do you think of the margins and the opinion that radiation is NOT NECESSARY."
Your wife should consult a radiation oncologist regarding radiation. Margins do not need to be 3 cm. Margins of >1 cm are very good, 3 mm-1 cm are good, < 3 mm should lead to the consult. The recommendation regarding radiation should depend mostly on margin width and the location of narrow margins. 1.5 mm is not terrible but not good either.
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BlairK I would like to add a positive comment regarding potential radiation. If this is required, your wife is fortunate that the right breast is involved as it obviates the potential complications to the heart that can occur on left breast radiation. To me, it is much preferable to require radiation on the right breast than the left, should it be recommended to you.
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Blair, I'm so sorry that the news isn't what you and your wife wanted. We all would have much preferred to have you stay here in the DCIS forum. Of course you are welcome to continue to post here - we want to know how your wife is doing - but now you may also want to visit some of the other forums, particularly the HER2+ forum.
With regard to margins, what is considered to be an acceptable margin for a mastectomy is different than what is considered acceptable for a lumpectomy. This is logical, when you think about it. With a lumpectomy, there is still breast tissue left in the breast on all sides of the excision. DCIS can "skip" so with a narrow margin of 2mm there is a reasonably high risk that there could be DCIS still left on the other side of that margin (i.e. in the breast tissue that remains in the breast). But with a mastectomy, while there will always be a tiny amount of breast tissue left in the breast, any breast tissue that is left is right up against the chest wall or the skin - and beyond that there is no more tissue. So as long as the margins are far enough from the chest wall and the skin, there is usually no concern.
Ideal margins, whether for a lumpectomy or mastectomy, are 10mm (1cm). For those who have lumpectomies, often a re-excision or a radiation boost is considered if margins are less than 3mm. For those who have mastectomies, usually 1mm is considered acceptable - and certainly 2mm is acceptable - particularly if the cancer closest to the margin is DCIS. In fact the NCCN treatment guidelines define close margins after a mastectomy as being <1mm - and this is for invasive cancer. Less than 1mm, radiation may be considered but even then it's not a sure thing So with a 1.5mm margin after a mastectomy, for most radiation oncologists your wife probably falls on the "no radiation necessary" side of the line. Still, it's definitely worth talking to a radiation oncologist about - and probably it's a good idea to get a couple of opinions.
As for the HER2 status and the need for Herceptin, current treatment standards suggest that Herceptin be recommended for HER2+ invasive tumors that are larger than 5mm in size. Usually if there is more than one tumor, treatment decisions are made based on the size of the largest tumor - the size of all the tumors is not added together. However what I've noticed from women on this board is that when the cancer is HER2+, often oncologists will add together the size of the tumors as they make the treatment recommendation. This means that while a 3.5mm HER2+ tumor usually wouldn't warrant Herceptin, with your wife having the two additional small invasive tumors, I think most oncologists would err on the conservative side and recommend Herceptin. And frankly, I've seen quite a few women on this board who've had just one 3mm or 4mm HER2+ tumor and their doctors have recommended Herceptin. This is an area where the benefits of the treatment are significant enough that most oncologists lean towards recommending Herceptin (and therefore, chemo) even for very small tumors.
See page 74 of the NCCN Treatment Guidelines for Patients: http://www.nccn.com/files/cancer-guidelines/breast/index.html#/74/
The NCCN Physicians Guide has more information but you need to register and sign in to be able to view the materials. Page 13 references when radiation is recommended after a mastectomy. Page 15 presents the treatment options and recommendations (based on tumor size and nodal status) for tumors that are HER2+. http://www.nccn.org/professionals/physician_gls/pdf/breast.pdf
Hope that helps!
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Dear Beesie - Thank you for your post. Again everyone respects your knowledge and the very good way you explain things. Perhaps you can help doctors to do a better job of explaining things. I will give everybody some more details from the pathology report which is 10 pages long ! Obviously the second breast (left breast diagnosed through MRI and biopsy) tumor and DCIS involvement was not as much. On the first breast (right breast diagnosed through mammogram and biopsy), the first thing of note was the grade increased from 2 - intermediate to 3 - high. Secondly, the estimated size of the DCIS is 2.4 cm in length by 1.5 cm in width. Six out of 13 blocks in the pathology specimen (the removed right breast) had DCIS. The right breast also had LCIS - lobular carcinoma in situ. Again, three foci of invasive carcinoma - 1 mm, 1 mm, 3.5 mm. I would like to clarify the margins data. The invasive ductal carcinoma margins are 1.5 mm as distance from closest margin. The DCIS margins are 2 mm as distance from closest margin. HER2/neu was done by FISH and is high at 5.0. Over 2.2 is considered high. The lab was NeoGenomics Laboratories. Again both breasts are ER positive and PR negative. I will stay on this board for now and the medical oncologist consultation is Monday. I think visit to radiation oncologist will come before Thanksgiving. Any treatment can't begin until early December. May move to HER2 board or other boards later but everybody is following me and my wife and knows us on this board. Thank you again.
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BlairK - I'm so sorry for you and your wife that she didn't end up with a final diagnosis of DCIS alone.
The only thing I can add to what's been said above is that since this is the DCIS area of the board, most women here (myself included) have not had treatment for anything other than DCIS. Therefore, we are not equipped to talk about chemo or Herceptin. (I know that I have absolutely no idea about those things.)
As comfortable as you are here, and as happy as I am about that, I'd strongly suggest you post in the Stage 1 and/or HER2+ sections of the board. At this point, the women posting there can assist you far better than we can.
We've never had chemo and we've never had herceptin. All we have is stories told by others. It would be much better for you to get it from women who really know - than secondhand from us!
Certainly, this is not meant as "Sweatyspice wants you to leave" - I'm interested in you and your wife and what happens. I'm not wanting to kick you out. I just don't think we can provide the help you now need.
Wishing you and your wife all the best!
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hi blairk, i am glad your wife's surgery went well and the drains have been removed.
as you have discovered, you don't really know what you are dealing with until the final pathology. i went from having one of the best breast cancers to have to one of the worst after my lumpectomy. i can't comment on the herceptin or hormone positive.
i can comment on the margins, one of my margins is 1mm, i told my bs i wasn't happy with that, he said i'm not either but it is against the chest wall the only way i could get a larger margin was to do a radical masectomy and i don't do them.
so even if i had done a masectomy, i would still have to do radiation, i have just done my 3rd dd a/c treatment ,1 more then 4 dd taxol then 6 1/2 wks radiation. chemo sucks but is doable, everyone's side effects are different, the one thing i've learned so far is the 3 treatments i've had, after the side effects are different to some degree or another. you just don't know how your body is going to react so you just deal the best you can. i hope this helps you some.
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Dear BlairK,
I'm truly sorry that there was idc in your wife's final path. report, but isn't there a possibility that she will not necessarily need chemo, because the idcs were so small?
Maybe it's different for a mx or because of the grade, I'm sorry if I'm being naive, but when the final pathology report from my lumpectomy showed that there was also 1.75 mm of grade 2 idc, it ultimately did not change my treatment plan. The rad onc. felt that I was below the cut-off for chemo, which she stated was 1 cm (and to this day I do not know my her2 status).
Wishing you both the very best!!!
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Blair - I have DCIS bilat, < 2 mm margins on both sides. My radiation oncologist is recommending rads bilaterally. The facility is one of the 40 centers recognized by the National Cancer Institute, so I trust their advisement. I think they are being especially conservative in my case since I am younger (under 45), and I had comedonecrosis. Perhaps the guidelines are becoming more strict/conservative based upon new research?
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Dear sweatyspice, belleeast, CTMOM1234 and dancetrancer. Thank you for your posts and I hope I will receive more posts in the next few days. After the visit to the medical oncologist on Monday, I will decide which section of the bulletin board to move to. Whatever treatments are recommended - Herceptin, Arimidex, chemotherapy and radiation (or a consultation with a Radiation Oncologist), nothing can start until early December since my wife must wait at least 6 weeks from the date of the surgery for any new treatments. In the meantime, after the visit to the medical oncologist, I am going back to China and Hong Kong for two weeks. My wife is ambulatory and doing everything except lifting and driving. She is strong and in good spirits except for the ups and downs and unpleasant surprises. The week of Thanksgiving, I am going to take my wife and kids to a nice warm vacation place for 5-7 days and then return for whatever treatment must be done in December. At lease my wife will be nice and relaxed. Please keep your posts coming and I will update on Monday with the results of the visit to the oncologist and which section of the bulletin board (or sections) I am going to move to. Thanks again.
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Hi Blairk - I posted very early on in your journey and haven't kept up. Today I ran across your post again and tried to catch up. A lot has gone on. It's hard to start with one diagnosis and have it get worse, but I agree with someone else who mentioned the positives about her situation. There are multiple tumors but they are very small. Stage 1 has a very good prognosis. I'm a stage 1'er and did 4 rounds of chemo. However I'm her2 negative so I don't know much about herceptin other than to hear people say it's much easier than chemo (and chemo wasn't fun, but it was do-able).. I'm on Tamoxifen rather than Armidex, so again, I can't help you there. Okay, I'm not very helpful, but just wanted to post and offer support. As for the early comments about you posting vs. your wife...Everyone has a different need for level of information and detail. That's the thing about marriages....we often marry someone with the same values, but a differrent take on things. That's what makes it work - we each bring something to the table that the other one doesn't have. In my marriage (and probably most of the women on here), I'm the gatherer or information. I occasionally meet women with BC and ask them a question about their ER/PR status or HER2 status and they don't know it and I'm floored. I've learned that's because they just don't need the same level of detail that I do. My husband is the one wanting me to stay off the boards so I don't make myself crazy with all of hte detail.
I'm glad you have some time off for her to rest and recover before more treatment. A Tthanksgiving vacation sounds like a good idea. Best wishes to you and your wife. -
Message to Wahine - it sounds like my situation is very similar to yours. I have DCIS on the left side that is grade 3 and I just had an MRI and they found something on the right side. I fear it is DCIS and I will probably decide to do a BMX. I am trying to decide which reconstruction process will be best. Just curious, what type did you go with? You say your are happy wth the results.
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Dear bcisnofun - Thank you for your post. You are very helpful. Every piece of information helps me.
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Dear DebiMetz - I am BlairK and this is my bulletin board thread. The Breastcancer.org has a private message facility so it would be much more appropriate, polite and observant of bulletin board etiquette for you to send a private message to Wahine using the private message facility then to post a public message like this which does not help me and my wife and is the main reason that I am using the bulletin board in the first place (to get help and support). Thank you very much for your attention to this matter. If you need help in using the private message facility, please let me know, and I will send you instructions on it.
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