Jul 22, 2020 10:38AM MinusTwo wrote:
Posted on: Jul 14, 2020 07:44PM
I am 4 days away from my 48th birthday.
I just got diagnosed with left breast DCIS with intermediate grade and right breast LCIS/ ADH
Due to the size of my DCIS area is pretty big with a lot of small masses surgeon suggested mastectomy on the left side.
I am thinking what to do with right side. I am leaning towards double mastectomy. What do you ladies suggest?
Should I consider reconstruction or just go flat? Or do I have to do the reconstruction right away immediately after the surgery?
What is the recurrence rate for the future?
Posts 31 - 60 (113 total)
Jul 22, 2020 10:38AM MinusTwo wrote:
Jul 22, 2020 11:06AM Beesie wrote:
Good luck with the surgery.
I would expect that you won't know if the final diagnosis on the left will be pure Stage 0 DCIS until after the pathology report is in, which is usually several days after the surgery. Similarly you won't know if the right remains ADH and LCIS until several days after surgery. So your plan would be to go back for a second surgery to have the right breast mastectomy if the results are not favorable?
Jul 22, 2020 11:15AM - edited Jul 22, 2020 01:15PM by everythingwillbefine
I thought about that too. Yes I asked that question during the consultation with the surgeon. I asked how soon can I do the right mastectomy if final pathology reports indicate right mastectomy is necessary. She said as soon as a few weeks after the left mastectomy...
I hope my diagnosis will not be upstaging. But I don' know nor the doctor.
She said the survival rate for either doing BMX or right lumpectomy plus tamoxifen is the same for me.
I think I am just hoping for the best.
I thought about which treatment option is better for my case. Since I want to try tamoxifen. Because my ER and PR is >90% +, I think taking tamoxifen would not only benefit my right breast but also benefit my left side although I won't have breast on the left any more, but there will still be a little tissue left, if I take tamoxifen it would reduce the risk of both side and to achieve the same survival rate as if I do BMX. So comparing both approaches, doing right side lumpectomy and tamoxifen will benefit both side while doing MBX I will lose the extra benefit from tamoxifen, while both approaches have same survival rate. Hope that makes sense? Or am I wrong? Also I am worried that no imaging after the mastectomy. Will that make early detection of recurrence more difficult?
What do you think?
Jul 22, 2020 03:15PM Beesie wrote:
"She said the survival rate for either doing BMX or right lumpectomy plus tamoxifen is the same for me."
Yes, there are studies that have found this to be the case. But under the covers of the numbers are some important differences.
After a BMX, your risk to develop breast cancer is 1%-2%. After an excisional biopsy/lumpectomy, your risk will be significantly higher (see earlier post from MelissaDallas; in your discussion with your surgeon, as suggested did you ask about your risk level to develop breast cancer if the excisional biopsy comes back with no cancer?). Tamoxifen can cut this risk by as much as 60%, but if you are starting with a risk of 25% or 30%, that still leaves you with a higher risk to develop cancer after a lumpectomy than after a BMX. I believe (but am not certain) that about 1/2 of this remaining risk will be for the development of DCIS, and 1/2 will be for the development of invasive cancer, either ILC (which can be difficult to detect) or IDC.
Since the risk to develop cancer is higher under the lumpectomy option, the way that the mortality risks between these two surgical options come in line is through the treatment of the cancer. It might just be surgery and Tamoxifen or an AI, or it might include chemo, Herceptin (if HER2+) or radiation. I'm totally guessing now, but I'd speculate that there is maybe a 5% greater risk of needing these types of treatments under the lumpectomy option than the MX option.
That 5% risk is small and might not impact your decision, given that you want to take Tamoxifen, and you won't be prescribed Tamoxifen after a BMX (because the risks outweigh the benefits, to my earlier post) but it would certainly be prescribed if you have the excisional biopsy only on the LCIS/ADH side. But if a 5% higher chance of needing treatments like chemo might change your decision, you need to talk to your surgeon again. If she only talked about survival rates, you need to ask about cancer rates - the risk that you might develop invasive cancer under each surgical option.
There is no right or wrong answer. Doctors tend to focus more on the final result, which in this case is the survival rate, which is approx. the same for both options. Patients usually look more broadly at both options and consider what's involved in getting to that survival rate. There is also a short-term vs. long-term perspective. Do you do something in the short term to avoid something that might, or might not, happen? Some people say yes, some people say no.
As for the benefit from Tamoxifen after the MX on the DCIS side (negligible if you have clear surgical margins) and your concerns about lack of screening after a BMX (not an issue), read my replies in earlier posts.
Jul 22, 2020 04:23PM - edited Jul 22, 2020 04:34PM by everythingwillbefine
This is a tough call.
Thank you very much for the education. I have the paper that surgeon wrote during the consultation. She wrote if no gene mutation and L is DCIS diagnosis and R is ADH/LCIS, annual new right side = 0.77% then Tamoxifen reduced by half so = 0.35%/year x 10 year = 3.5% over 10 years and 14% life time.
Now I am looking at this note I am not sure if this is the survival rate or the risk of developing new cancer rate.
This number seems to me very low so I decided to go with only mastectomy on my left. and I don't know why this number is so low....Also I was worried to make a decision of over treatment without knowing the final pathology. And I admit that the long incision cut also scared me.
Also does it make sense to do a mastectomy on Right side soon after the mastectomy on the left?
I will email the surgeon asking the risk of developing cancer on my right and see what she says.
I also spoke with OB who is supportive on the decision of L mastectomy and R lumptectomy. She said surgery is a surgery if we don't need to do it we don't do it. I am confused and cannot get my head wrapped around with an answer.
Jul 22, 2020 05:56PM Beesie wrote:
Ah, those figures are the risk to develop cancer, not the mortality rate - the numbers are much too to high be mortality rates.
The figures may be a bit low given that you have both LCIS and now have a history of breast cancer with your diagnosis of DCIS, but they aren't out of line. Your doctor may just be assuming risk at the lower end of the range. At 0.77% per year, your cancer risk from now to age 85 would be 28%.
With Tamoxifen, it would not necessarily drop to 14% - that depends on how long you take Tamoxifen (or shift to an AI). Tamoxifen reduces your risk while you are taking it, and for quite a few years afterwards, but at some point the benefit will wear off. So 5 years of Tamox wouldn't likely reduce your risk by 50% over 37 years (to age 85). Same with 10 years on Tamox and/or an AI - you might get reduced risk for 20 years (but probably not at the 50% reduction rate the whole time) but not likely for 37 years.
Just another fly in the ointment.
Since you are uncertain, the least risk short term decision is to have the UMX and excisional biopsy. After that you will have more information about your diagnosis, and you will know a whole lot more about mastectomy surgery and recovery. You can then choose to have the second MX, or not. You can't change your mind after a MX, but you can change your mind after a lumpectomy. So if you are struggling with the decision and your surgery date is approaching, it seems to make sense to go with the option that leaves you with options.
Jul 22, 2020 06:25PM everythingwillbefine wrote:
Thank you and I think you read my mind.
What I remember that the doctor told me is that I can take a different medicine after I am done with Tamoxifen to continue reduce my risk. I remember I did ask her how long the tamoxifen will work what if I don't take it any more after 5 years. She said the effect continue even after I stop taking tamoxifen and she said you can also take a different medicine at that time....
I did already emailed the doctor about my questions. And for the matter of fact now looking at those numbers I don't know where that 0.77%/yr come from what study and paper. I would like to read that paper if the doctor could provide me a link I will share it here.
Thank you Beesie again!
Jul 22, 2020 07:48PM suzopedia wrote:
I am back for a second time at breastcancer.org. Fifteen years ago I had IDC, stage 2A in my left breast and my treatment was 2 lumpectomies, radiation and chemo and hormone therapy. I have been getting my mammograms yearly since and the last thing I expected was a new cancer dx. But the beast is back. This time, its DCIS in the other breast. I'm scheduled for a partial mastectomy on Friday. According to the mamo, mri and biopsy they don't think it is very big, about 2 cm. The surgeon did not suggest a mastectomy but just remove the smaller area. She even told me about studies where they don't treat DCIS at all. But she did warn me that she may find something worse when she gets in there. I'm 70 years old. I'm not ready to go through all this again. Reading through some of these posts, I don't know what to think. Should I get a mastectomy? I'm not really ready for that. When they gave me the dx I was just happy I didn't need to go through chemo again, but it looks like I have a whole new set of things to worry about. Things I don't understand. I guess I want this out of my body and I'll worry about the rest later. I have an appointment for genetic counseling next week. How do you know you are making the right decisions? This is what I got so far.
A. Right breast stereotactic biopsy calcifications inferior medial:
Ductal carcinoma in situ, intermediate grade solid and
cribriform types, measuring 4 millimeters in greatest dimension
on the biopsy cores, with necrosis and tumor-associated
Ductal carcinoma in situ.
Grade: Intermediate Grade.
Tumor Size: at least 4 millimeters (this limited core sample may
not be reflective of the actual tumor size).
Prognostic Studies: Please see future addenda.
1. ER: Positive, 95%, strong.
2. PR: Positive, 65%, moderate.
Jul 24, 2020 10:01AM - edited Jul 24, 2020 12:15PM by everythingwillbefine
Beesie and other ladies,
My op date is approaching next Friday and I am still not 100% for sure what I should do with my right side. I know it's my decision but I want to know what you experiences are, please know I really really appreciate your input.
I had a call with a medical oncologist whom my sister was able to find for me yesterday and she mentioned the back pain after the single mastectomy due to the loss of the weight balance after the single mastectomy which I never thought of and I don't know how important that is. I have a C cup on my left and probably B on my right. My left is always bigger than my right and now the left needs to go. I am thin and 5'4" and weigh 113 pounds.
Also from what I recall the conversion with OB, she mentioned that she is a little concerned that with BMX there will be no imaging in the future. I know because my DCIS masses were not detected during the physical exam but showed up only on MRI. I am guessing her concern is that she might not be able to feel the little lump of DCIS if there is any in the future. Beesie, that's my concern too. I could not find your post on your comments on the early diagnosis after BMX how difficult that would be.
The reason why it's hard to make the call is that my right side is only ADH/LCIS for what I know now. If it were DCIS or higher or I have a genetic mutation then BMX would probably make more sense. I am still waiting for my genetic testing result I just sent in on 7/21 and nurse said hopefully it will come back before the surgery 7/31! On well.
I don't have anyone in my family who has breast or ovarian cancer or prostate cancer. But my father side there is only one female relative who is my aunt but she passed at age 60 very early from diabetes. So I don't know if my father side carries any mutation.
My current thought is that I will go with left mastectomy and right lumpectomy. If the right side is upstaged after surgical pathology, knocking on the wood hopefully not, I still can decide to do another surgery of right mastectomy later. Not sure whether it's feasible or make sense or not.
I don't care about the cosmetic. I am going flat. I only care about the risk of developing cancer and how easy to catch them early.
Beesie ---- "The figures may be a bit low given that you have both LCIS and now have a history of breast cancer with your diagnosis of DCIS, but they aren't out of line. Your doctor may just be assuming risk at the lower end of the range. At 0.77% per year, your cancer risk from now to age 85 would be 28%."
Beesie, please help me understand, if I go with BMX will my risk of developing cancer remains 1-2% from now to age 85? and with lumpectomy, at 0.77% per year, my risk of developing cancer from now to age 85 is 28%? I know tamoxifen would reduce 28% to hopefully around 14-17%. But with BMX, my life time risk of developing new breast cancer is 1-2% life time till I'm 85?
On the other hand, I'm thinking, on average the risk of developing breast cancer in a woman's lifetime is about 1/8 which is around 12% according to what I read. So if my risk is lowered to similar as the general population after lumpectomy and tamoxifen, should that be good enough? My estimated risk of developing cancer on my right breast, if the current pathology will not be upstaging after surgery, is about 14% to 18% I am guessing. Should I be satisfied with the result that is already close to the general population.
What is the goal?
Should an average risked woman go under BMX just to get her risk of developing breast cancer down to 1-2%?
My mind is not settled yet on a peaceful decision. I am just writing them down as they go.
Jul 24, 2020 12:50PM Beesie wrote:
Everythingwillbefine, as a general rule I prefer to not share my personal experiences. This is simply because my reasoning for my choices is based on what's important to me and how I think about risk, which is not necessarily how anyone else thinks. Additionally, how everything has gone with me and how I feel about my choices after the fact is unique to me and guaranteed to not to be the same for you or anyone else.
Personal anecdotes are interesting and there are situations where they may provide helpful information (dealing with side effects, for example) but the one thing I absolutely never want to do is influence someone else's decision, and for that reason I tend to not share my experiences when someone is having a tough time deciding what to do for themselves. I don't want my experience to influence your decision.
To make the best decision for yourself, you need to understand the facts of your situation and the pros & cons of each of the choices. Your first source for that information should be your doctors. To supplement that, and to assist you in your discussions with your doctors, I have tried to provide as much fact-based info as I can, both from a general standpoint and specific to what you currently know about your diagnosis. Everything you are asking about now has either been answered in my previous posts, or are questions that no else can or should answer for you.
Go back and read all the answers already provided, by me and others, in this thread and your previous thread. Then decide what is best for you.
Good luck with your surgery next week, whatever you decide!
Jul 24, 2020 04:50PM - edited Jul 24, 2020 04:50PM by everythingwillbefine
Thank you Bessie!
I have a 2nd opinion doctor appointment on 7/29 this is the earliest I can get. I will see what that doctor say about it.
It seems no right or wrong answer. So far I am leaning towards left mastectomy and right lumpectomy and tamoxifen based on my current diagnosis. But who knows maybe I will change my mind next week to go with a BMX...
Jul 25, 2020 10:24AM - edited Jul 26, 2020 10:02PM by LaVue
This this is my experience.
I was diagnosed with dcis on my left breast back in February. My right breast was high risk so the radiologist did a biopsy and it turns out I had radial scars.
From the beginning, I knew I was going to get a double mastectomy. my first breast surgeon agreed with a mastectomy on the left breast but not on the right breast. Ultimately, she agreed on the bilateral.
For insurance reasons I had to change breast surgeons. That breast surgeon preferred I have a lumpectomy on both sides. My preference was a BMX and that is what we scheduled.
Normally, those of us with dcis do not see an oncologist. However, I was assigned one because the bilateral was postponed due to covid and the breast surgeon wanted me to take tamoxifen in the meantime.
the oncologist also preferred that I have a lumpectomy on both sides. I asked him the reason. He mentioned the survival rates. He also said it's because his happiest patients are the patients that have the breast they were born with.
After the bilateral, the pathology report showed I had lcis/adh in the right breast. At that point my breast surgeon said she was glad we did go ahead with the double mastectomy.
All this to say is that I agree with you. Sometimes it doesn't seem to be a right or wrong answer just the answer that feels right at the moment.
Keep us posted.
Jul 25, 2020 12:59PM - edited Jul 25, 2020 01:01PM by everythingwillbefine
Thank you very much for letting me know your experience! I appreciate it.
At the moment, I am leaning towards a Left mastectomy and Right lumpectomy plus Tamoxifen.
I feel more comfortable making the decision based on what I know as a fact right now. Future pathology after the surgery holds a lot of possibilities, also my genetic testing result has not back yet, should anything more concern come out I will decide then based on new fact, including possibly another surgery of right mastectomy.
I appreciate you sharing your experience! and I hope we all completely get rid of this damn cancer and move on with our lives fully and happily to 100 years old!
Jul 26, 2020 09:02PM - edited Jul 26, 2020 09:16PM by everythingwillbefine
Here I am again. LOL
Back and force tossing my decisions on BMX or not.
I read my doctor's notes on the follow up method again and it reads as follows
--"if bilateral the follow up is every 6 month for the first year then yearly physical exam."
--"if lumpectomy, then every 4 months of ultrasound, MRI, and 3D mamo rotation plus physical exam, and tamoxifen."
It did not specify how long this every 4 month checkup frequency will have to be maintained. I just emailed the nurse asking for an answer. If this frequency will need to be maintained for 5 years it seems every long and stressful. And after that will it be downgraded to every 6 months mamo and MRI rotation? On top of that, I read that the dye that is used in the MRI seems to have some debating on the safety?! because it may retain in the brain?!
My concerns of the BMX is that the lack of the monitoring afterwards, there will be no imaging so that could make the early detection difficult, right? Thus when found it could be Invasive already.. That scared me. But the life time risk of developing a new primary or recurrence will be 1-2%, that is very attractive. So my risk will be lower than general population, even though I have had diagnosis of DCIS, am I right?
I sent email to the surgeon again this evening. I want to talk to her. I don't understand why she insisted that I don't need to talk to oncologist before the surgery. I need to talk to more medical professional to help me make the decision.
I want to know from the surgeon, if I do BMX, how confident that she will be able to achieve clean margin on my right breast which is only diagnosed for LCIS/ADH/ALH on needle biopsy. That is very close to my chest wall from what I can tell because the incision is on the side of me. If it turns out to be cancer in that area and the margin is not wide enough, do I still need to go through radiation. I need to know based on the imaging how likely she will be able to achieve the wide margin.
Please for those of you that chose lumpectomy, how often you were followed up after the lumpectomy and for long?
My surgery date is 7/31, in 5 days. Should I delay it? Is it too tight time wise to alter my decision? Is the doctor prepared to do a bilateral?
Jul 26, 2020 10:04PM Beesie wrote:
"My concerns of the BMX is that the lack of the monitoring afterwards, there will be no imaging so that could make the early detection difficult, right?"
You asked this question 3 or 4 times now; each time I suggested that you reread the answer already provided. See my post of July18.
Jul 27, 2020 06:42AM MelissaDallas wrote:
There really is no “clean margin” with LCIS/ALH because it tends to be diffusely through the breast (often both) and it usually does not show on imaging. Because of this there is really no way of knowing if there may not be more of it elsewhere in that breast
Jul 29, 2020 02:03PM - edited Jul 29, 2020 02:54PM by everythingwillbefine
Just want to update everyone.
My genetic test 86 panels came back all negative, except one variation MSH2 which is uncertain of whether it's related to colon cancer or not, but neither side of my family had colon cancer at all. And genetic counselor basically told me everything is fine. I am very relieved to know this.
On the other note, I decided to go with left side mastectomy and right side excisional biopsy this Friday 7/31 with tamoxifen.
Should the final pathology upstage on the right side I will consider removing the right side. Even if it just turns out to be just ADH/LCIS, I am still considering to remove it next year. My breasts are extremely dense and I don't trust the imaging.
I'm thin and my family is concerned of whether my body is able to handle the surgery of BMX so they want me to do one at a time if I really considering this route. I took their advice, and it's also my surgeon's suggestion.
Thank you everyone and I hope I made the right decision.
Jul 29, 2020 05:56PM Beesie wrote:
Glad your decision is made. As you said, you can always have the second mastectomy later if you decide you want it, so this gives you flexibility.
Good luck with the surgery on Friday!
Jul 29, 2020 06:15PM everythingwillbefine wrote:
Thank you Beesie!!
Jul 29, 2020 07:32PM MinusTwo wrote:
Good luck everything.
Jul 29, 2020 07:54PM everythingwillbefine wrote:
Thank you Minus!!
Jul 30, 2020 11:19AM everythingwillbefine wrote:
I am so nervous for tomorrow's procedure...now it's coming up tomorrow....I'm so nervous about anesthesia and survival of the surgery.
Jul 30, 2020 03:51PM MinusTwo wrote:
Everything - whatever you can do to calm down will help. Not medicate, unless your doc says it's OK before surgery. But walking, binge watching TV, eating chocolate ice cream. It's rarely as bad as you think it might be.
When you see the anesthesiologist before surgery, ask about getting 'scop' patch. It helped reduce lots of the anesthesia side effects for me.
Jul 30, 2020 04:15PM everythingwillbefine wrote:
Thank you Minus!
I just came back from nuclear appt today. They had to inject around the nipple on my left side to prepare for the lymph node removal tomorrow. Also went to the radiologist to get the seed done for the right side excisional biopsy. I also got a mastectomy camisole. They gave me a size small. I am not sure whether I will be able to wear it after the amputation. It's so snug. I bought online a mastectomy shirt with the pocket for drain. I will take both with me tomorrow.
I will certainly ask for the scop patch! Thank you!
When I had my C section I remember I was very very thirsty and they don't give me water! Only ice chip because I was so nauseous from the anesthesis. I cannot imagine how much it is going to hurt if I vomit.
Thank you! I will take a walk now.
Jul 30, 2020 05:13PM Beesie wrote:
The anesthesiologist will stop by to see you before the operation. Be sure to tell him/her that you get nauseous from anaesthesia. I have that issue too and there are meds that they can give you along with the anaesthesia to stop it from happening. Usually now I don't have any issue or if I do, it's just minor nausea a few hours after I awake - nothing like what I used to get, which was not pleasant!
Good luck tomorrow!
Jul 30, 2020 05:33PM everythingwillbefine wrote:
gotcha thanks Bessie!
Jul 31, 2020 04:27PM LaVue wrote:
Thinking thinking of you today, everythingwillbefine.
Aug 2, 2020 05:36PM everythingwillbefine wrote:
I survived the surgery
I experienced shaking upon waking up from anesthesia and I was not 100% constuious but I know I was shaking badly.
I am home on Sat
My legs feet arms and hands are all swollen
I feel lots of pressure on my mastectomy side chest
I was told remove the dressing and tape shower on Monday
I was scared to remove the dressing I will have my husband do i
Aug 2, 2020 09:05PM MinusTwo wrote:
Glad you're home safely. My own bed always fees best.
RE the shower - do you not have drains? If so I wrapped mine with Glad Press N'Seal. As for the steriTape across the incisions - I was told not to remove those pieces - to just let them wear off.
Aug 3, 2020 09:50PM suzopedia wrote:
Well I had surgery and the margins were too close- .1mm The surgeon is recommending more surgery to get 2mm margins.She provided 4 options for me and she said I needed to make a decision. And there aren't any wrong answers. I can have mastectomy, but it isn't really needed. I can do nothing. I can go in and she will just take more tissue. I can wait 3 weeks, get a mammogram first and look for any more calcifications. And then she will go after that part of the tissue. And she will have a plastic surgeon there to reshape my breast. I'm kinda leaning towards this idea since I had two lumpectomies in my left breast 15 years ago and it looks like I've been mauled. I know the right breast will be smaller after she takes more tissue out but it would be good if it looked like a regular small breast. I don't know if they can do anything to improve the look of the left side, but I will ask.
According to the pathology report, the area is 3.2cm, it is grade 2 with focal grade 3. I guess that means there are small areas that are grade 3. They didn't find any micro invasions. YAY. So still no chemo. I'm 70 years old, so she suggested radiation for sure but said no one would care if I decided against adjuvant therapy.
I've been getting my mammograms every year since my dx in 2005. I am surprised that I had all this DCIS pop up that quickly so I'm not wanting to face this again when I'm 80. I feel sad even tho I know this could be so much worse. Take care everyone.