advice,newly diagnosed

meggie1081

Hello, I am hoping there is someone out there who has had a similar experience as I.  I don t have all the jargon down yet as this is so new to me and change going almost weekly.   10/3 of this year I had a ultra sound guided biopsy on a suspicious spot picked up on my yearly mammogram. A few days later I was told it was cancer and went to see a surgeon who told me it was grade one, very small, a lumpectomy  would take care of it, 6 weeks of radiation, most likely no chemo. I got my head wrapped around a diagnosis of cancer, but seemingly the Cadillac of cancer, if you will.  Several days later I received a call from the surgeon, another area was found on the ultra sound, another biopsy needed.

This time it was a needle biopsy. Another cancer diagnosis.     Went back to the surgeon  she agreed to continue with the lumpectomy, feeling  she could get the needed margins  she did tell me that there would more  than likely be a deformity; which was fine with me.  She also said she would like to get an MRI of the breast to get as much information as she could. I agreed and the MRI was Tuesday.  Today I received  a phone call from a nurse saying 2 more areas we found  on the MRI and a lumpectomy is now out of the question AND  an area of suspicion on the left breast which I need to get biopsies next Thursday .

I am beside myself, each new test brings worse and worse  news.

Has anyone had a similar experience? 

Advice :  what questions should I be asking the surgeon when I see her on Wed?

                What good would a second opinion do me?

                  I don't t want to have reconstruction... is that a good or bad idea. 

I appreciate any information/advice you can give me. Frankly, I am terrified. 

farmerlucy

Hi Meggie - what terrible news! Keep in mind that MRIs are prone to false positives. Regarding recon or not go with what is in your heart. You can opt to construct later, conversely you could deconstruct if you opt for implants. It is not set in stone. I so understand your terror. I'm glad you found us. There is a wealth of info here to digest.  Sending you a gentle cyber hug. Please let me know if I can help with anything.

Holeinone

Meggie, 

Sorry, it all stinks ! Until the surgeon gets in there & takes out what's needed, it's a guessing game. Well they have some idea, but this website is filled with stories, mine included, of well crap! that did not turn out like they said it would/should. 

I was dx with Lobular 15 months ago. Stage 3. I had a easy lumpectomy. My axillary was bursting with cancer. Dr. Was surprised, I was in shock.....still am...

If you read on the Lobular threads here, many of the women have had mastectomies. Lobular is harder to find, they call it the "sneaky cancer". I cannot answer the reconstruction ?. I have read too many stories about what can go wrong. But if every thing is great, ladies do not need to talk about it, so you hear the stories of pain or infection. For myself, now after what I have gone through, I would say no thanks to more surgery. Also, I think age is probably a factor. 

Take your time, you do not have a surgery date yet. I never got a second opinion. I trusted my Dr. & the cancer board reviewed my case. If you live in a area where you can get a second opinion, and you will feel more confident then do so. The next few months to a year could be bumpy. Be kind to yourself, and take it one day at a time. Try not to over think it all, hard to do, but it becomes over whelming. I did not get any meds for anxiety until I was almost done with radiation. That was a mistake. 

Meow13

Hi I had 1 ILC and 1 IDC.  I did the mastectomy no other spots were found. I was really afraid of reconstruction I never had surgery before. A friend of mine had a DIEP and it looked great. She said it wasn't difficult so I did it and I am so happy with results. It looks really good.

Momine

Mine was similar, except they couldn't see a bunch of it prior to surgery. I had one area that was huge (and visible as well as palpable), so a mastectomy on that breast was a given. I chose to lop the other one as well, and it turned out to be a wise decision, because it was full of stage 0 cancer (LCIS).

My surgeon asked me to wait with recon for 2 years. At the time I was a bit shocked by the idea, but now I am so glad that I was not rushed into the reconstruction. In the end I chose not to do it. As someone else said, you can always change your mind down the road. For me, it was definitely a huge advantage not to be dealing with additional pain, complications surgeries etc. in the middle of treatment (and after). Many of us choose to skip the recon. You will find loads of support here and elsewhere.

If you do decide you want reconstruction, research your options carefully. Meow mentioned the  DIEP (using tissue from the belly to reconstruct) and those do often come out looking really good. But it is also a really long surgery and you end up with a very long scar across the belly. Each method has pros and cons that you have to consider. In my case, I am not really a good candidate for any of the methods because I do not have enough extra "meat" anywhere for a flap surgery and due to extensive radiation treatment, I am not a good candidate for implants.

meggie1081

thank you for your kind words and advice.

Moderators

Oh Meggie1081, we're so sorry for what you'e going through. It's overwhelming and confusing and really, really scary, we know. We're glad you found this community, there are so many women here that can offer you advice and support and help you through this (even if it is in cyberspace). Keep posting, we'll be thinking of you.

The Mods

Nomatterwhat

Wow, Meggie, I remember that road.  I had all the tests -- MRI, sonogram, needle biopsies and was told a lumpectomy would work for me.  After I woke up from the lumpectomy I had a blue breast on the right side and my surgeon, husband and son standing beside my bed.  My surgeon explained to me that the blue dye covered about 98% of my right breast and that I had both DCIS and ILC in my right breast.  After further testing, we also found out that my left breast had some DCIS.  Thankfully no lymph nodes were involved.  For me there was no other option other than a double mastectomy.  I was terrified and devastated.  I had my BMX on 8/4/14, finished 4 rounds of chemo the end of October and am headed to radiation later this month.  I have had no reconstruction and will not have any.  I wear prosthesis and love coming home taking my wig and my boobs off and getting comfortable.  As my dear husband has told me from the beginning "boobs do not define who you are and I didn't marry you 32 years ago just for your boobs".  What a guy!!!!!  Reconstruction is such a personal issue and you can always do it after things settle down for you.  

Is it a simple mastectomy, radical mastectomy and how many lymph nodes need to be removed?  My big question was the recovery time, because I had to let my boss know when I would be returning to work.  Hugs

Meow13

I just wanted to mention the very long scar from DIEP. In my case my ps was able to have the scar low below bikini line. Not that I would wear a bikini but it is well hidden.

Anonymous

So sorry for your news, my dear.

I waited nearly two years to decide on my bmx. My stats were supposed to be the same (BMX vs. lumpectomy and rads) but with ILC I knew that often that type is multi-focal and the standard of care is a mammogram.  I had mammos for 5 years that were "clear" all the while I had a 2 c. tumor growing in me that I found with a self-exam when it got big enough to feel.

I had  silicone implants. It was one-stop shopping because I wanted to stay small. I'm still a little bigger than my size A cups were before the surgery. I didn't have to have expanders, or have anything removed from any other part of me (except the breast tissue).  It was a pretty easy surgery.  I was in the hospital two nights and was home on the 3rd.  Back to mostly regular activiites by the second week but slept on my back on a wedge pillow for two weeks.  

Good luck in your decision. My husband supported me in anything I wanted todo, too.l

Ridley

Meggie - I feel like you are almost living what I went through.  First biopsy positive, then an MRI, then two more biopsies, more cancer, then surgery - then multiple areas of cancer found.  It sucked - I felt like I kept getting worse news.  But, I had clean nodes and a very low oncotype.  I did end up having bilat cancer, and bilat mast with diep recon.  No radiation and no chemo.  Recon is almost done and I'm happy with it.  I'm also on tamoxifen.

I hope your bad news is over and you only get good results from here on in.  If you would like to pursue a lumpectomy, I would get them to biopsy the two new areas (unless they are sure they are malignant).  Sounds like you will need to biopsy the other side anyway, so they may as well do the other areas.  I had two MRI guided biopsies done the same day, so I don't know why they couldn't do three.

This period of uncertainty is the worst because you don't know what treatment will be needed.  I think for most, it gets better once a treatment plan is in place,

lisa137

One thing to consider, that I wish I had been clearheaded enough at the time to have considered myself:

I had an MRI and then core needle biopsy on my left breast. The MRI also showed areas of concern in my right breast, so I was told to get an MRI guided needle biopsy for that one, as, well, which I did.

Looking back on it, I wish I had said "How about we wait and see if the first biopsy comes back positive for cancer, because if it DOES, I want a double mastectomy anyway, and y'all can figure out what's in the right one on your own without needing me to be there."

 

As it turned out, the right breast did not have cancer, but I've been told by two oncologists that the double mastectomy was a good decisions because those areas of concern would have most likely become cancerous later on down the road. So yeah. I really could have skipped that second biopsy. Hindsight.

To reconstruct or not to reconstruct is totally your own decision. I've opted not to reconstruct, and one year later I'm still happy with that decision. I run around flat and no one seems to notice.

Nomatterwhat

Lisa, I hear ya!!!  Looking back I wish I would have opted for the double mastectomy instead of going for the lumpectomy first.  The tests only showed a small 1.9 cm lump in rightie and nothing else.  After the second round of biopsies on rightie, I was ready to rip them off myself.  But, as it turned out I had two kinds of cancer in my right breast and pre-cancer in my left. If my surgeon had not recommended a double mastectomy, I would probably have cancer in my left breast in about 3 years.  NO Thanks, this one experience is enough for me.  I am glad to hear you are happy with your decision not to reconstruct.  I am not reconstructing either and it makes me very happy to take the girls off when I get home and run around flat.  I think the more I get used to being flat the more I will go out in public flat. 

lisa137

I originally intended to get some "foobs" to wear out, at least, but just  never have gotten around to it. I still might, at some point, but then again, I might not bother. I never liked bras anyway, lol. I was a little self conscious at first, but now when I go out, I really don't even think about it. And my husband says it's okay with him just the way it is.   

sgreenarch

Meggie, really feel for you. My story was similar in that I was told first that lumpectomy was possible but then an MRI found something on the opposite quadrant which biopsy proved pos too. Was told that I would've been left w 'Swiss cheese breast.' not too appealing. By then I was also reeling and preferring the mastectomy to any more surprises from this troublesome breast. But I'd like to throw something else into the discussion, and please forgive me if this confuses you or makes you anxious. In my case I was urged by all members of my team to hold onto my right breast (which looked healthy in all scans.) I know that ILC is sneaky and was battle weary and just plain frightened at the time. But I listened to them and had a unilateral mx. Right breast is hanging on (and down but I mostly don't regret this decision. It isn't easy to be assymetrical (haven't done reconstruction and don't think I ever will. I am young but not a good candidate for any of the surgeries and am growing a begrudging acceptance for my changed but healthy self as I am.) I admit that i sweat the yearly scans but am watched closely (2x year at breast surgeon, alternating w onc. Mammogram alternating every six mos with mri) so hopefully anything in rightie would be caught early. My onc swears that though sneaky, ILC doesn't become contra lateral any more frequently than idc. Rightie is a healthy body part and I know that there's a chance that, God willing, one can go for many years, perhaps til the end of a long life, with no further troubles. 

Just another perspective. Also saying that I completely understand the women who've chosen bmx. Both sides have merit. Not an easy decision but once made (with the counsel of your medical team) rest easy and move on.

Shari

meggie1081

Thank you for the questions to ask. Saw the surgeon today. As farmerlucy said she agreed that MRI s show false positives, but she is pretty confident areas in right breast are more cancer, so a mastectomy will be scheduled. Thanks Ridley  I did mention about biopsies for the new areas on the right.

I will have an ultrasound tomorrow on my left breast and IF they can see the areas (now there are 3), they will do two biopsies. If they cannot see them I will have to have an MRI guided core biopsy.  Some of you had mentioned those  can you give me an idea of what to expect?

I cannot tell you how much all this information and support means. You are all godsends!

mary625

I have had the MRI guided biopsy in the same situation you are in.  My left breast had the known cancer, but the MRI picked up 3 places on the right initially, which became 2 places further down the road after chemo.  I was frustrated having 2 biopsies just 2 weeks before I was planning to have the BMX, but my surgeon said if I didn't do that, then she would have to do the sentinel node biopsy on the right side.  I was already having the lymph node removal on the left, so I did it in order to protect my right arm.  Good thing I did because I do have lymphedema on the left.

I would definitely recommend asking for some Valium or something before the procedure.  It involves several times in and out of the MRI first (and you already have experienced that), plus one time to see if the needles are in the right place, then another time to check the biopsy area.  The main difference is that they put the breast into compression--not as much as a mammo.  So you've got that to deal with too while lying really still.  The compression plates seem to have a grid design with openings, and I guess that's how they know where to insert the needle.  In my case, they hooked the needle up to a vacuum biopsy machine.  The thought of that really scared me, but they told me that in addition to the local they would give me, the machine will put out some anesthetic in the area before taking the biopsy.  

I did not have any pain, but I think it took longer than an hour.  Valium highly recommended.  I then had a lot of bruising.  Didn't even get to have a nice looking boob for the last two weeks I had it!

meggie1081

oh god sounds awful. Thanks for that letting  me know.  It is so much easier going in if you know what you have to deal with.  It's  the unknown that's  making me crazy.

Ridley

meggie -- my experience was similar to Mary's -- lots of in and out of the machine to make sure they have the right spot -- they use freezing so you shouldn't have pain.  I didn't take anything before (e.g. valium), but I think that's a good idea!