Need help and encouragement that this is not a death sentance

cuggle

My 86 yr old mother just had a left breast masectomy after some pretty radical changes on a mammo. She had a DCIS but kind of played the wait and see game. About 10 months later mammo changed dramatically but DCIS had remained and immediate masectomy was recommended. We just received the path report and my head is SPINNING. The surgeon didn't say much expect, "Glad you let us operate on you since the mass was 8.5cm." She then went on to say the path report "Isn't good news and this will probably be the thing that is gonna get you." Yes, she said that. Not exactly what you want to hear. She said because this is a high grade and double negative so far (pending other report) it's not good news along with high Ki-67. Oncology appt next week to discuss treatment and likely scans to see if there are mets. Otherwise in excellent health. I basically feel like she'll die next week and they weren't very encouraging. Now I do realize my mother is going to die of something but this just sounds unbelievably bad and that she doesn't have long. Please can someone give me some feedback......

Path report:

Left axillary sentinel node 1 & 2 showing no evidence of malignancy

Left breast masectomy: Invasion spanning 8.5 cm

Historical Type: Invasive ductal carcinoma, predominately papillary and focal micropapillary with mucinous features.

Histologic grade: High

Nottingham Grade; 2 of 3 (score 8 of 9)

Tubule formation: Intermediate (2 of 3)

Nuclear grade: High (3 of 3)

Mitotic grade: High (3 of 3)

Tumor focality: uncertain

Skin: Not involved

Nipple: present with ductal carcinoma in situ

Lymph vascular invasion: not identified

Ductal carcinoma in situ present

Architecural pattern: Pappillary, micropapillary, cribriform and clinging

Nuclear grade: high

Necrosis: Focal necrosis present

Calcifications: Present with DCIS

DCIS: 3.5 cm

Invasive carcinoma: Inferior/superficial: Negative

Superior/superficial: Negative

Posterior (deep): negative

Lymph node involvement: Zero

Diagnosis comment: This is an unusual appearing carcinoma with a multicystic mass grossly involving a large area of the breast. The overall pattern is large duct like spaces with an invasive papillary growth pattern. In some areas surrounding the cystic lesion there are foci of invasive micropapillary growth occasioning with mucinous material. Due to the unusual pattern of the tumor the possibility of multifocal disease cannot be excluded.

ERS -

PRS -

HER2 by immnohistochemistery: Negative

HER2 by in situ pending

Proliferation Index (Ki-67) 58%

Sounds aggressive and horrible to me!

Meow13

Sounds like no lymph nodes involved that is good. Too bad it looks like triple negative. Maybe CMF chemo would be suitable for your mom. It isn't as harsh as ACT chemo. Actually with the rapidly dividing cells mitotic 3 the chemo might be very effective.

It isn't a death sentence find a good oncologist willing to try new treatments. I would want her to have a good pet/MRI to make sure disease has gone beyond the breast. People die from metatised bc.

Best wishes

cuggle

I understand if there are mets there is NO CURE. I'm just trying to understand if she has any options whatsoever and that she could live a year or so more. I'm not unrealistic it was just the surgeon was so cold and rude about it.

Meow13

She most likely has many years left. Especially if the cancer hasn't spread outside the breast. Even if it has I know many women that are still around years after diagnosis of stage 4 bc.

I would ask for second opinions. There is no reason to believe she will die from this, so many meds are available.

At 86 I think they would try a milder chemo with little to no side effects to keep her healthy.

I can talk to my sister in law her mother was in her 80s and had a mastectomy she didn't die of bc. I can ask what meds they gave her.

Surgeon's are notoriously cold, I found my surgeon really didn't know half as much as my oncologist.

Praying for your mom.

cuggle

Thank you! Thankfully she has a wonderful oncologist because she is 4 years post operative lung CA (stage 1) with no chemo or radiation needed after the lung removal. Hopefully since she already has a developed relationship with her oncologist this may help. I just cannot believe how fast this all happened. Hey..... she's not 40 and has had a great life. Something is going to happen but I would like her to die with dignity. Prayer never hurts......

Sjacobs146

I don't think that a Cancer diagnosis precludes her from dying with dignity. She needs to have a conversation about this with her docs before she starts treatment. They should understand what her goals for living are. They should tailor her treatment to meet those goals. An 86 year old will likely have a different treatment plan than a 46 year old. Good luck to you both

cuggle

It's nice hearing there are options. I need to hear more. This is so helpful. I have been having the worst panic attacks over this to the point where I've worked myself up into a frenzy. I keep hearing what the surgeon said in my head "It's not good news and this is the thing that's gonna get ya"

marie5890

Cuggle, Im so very sorry to hear of your mother's diagnosis. Triple Negative BC is a really tough one to treat because it has far less options.

Highly recommend you go down to the Triple Negative section and get some good feedback from the ladies there.

Molly50

Cuggle, I am sorry about your mom. Have you had any genetic testing? Lung and BC might be due to a genetic mutation.

cuggle

No genetic testing that I'm aware of. Do you mean for me of her?

---

cuggle

Oncology appointment is Friday. I am sure they will order the PET scan then. I just can't help but keep going to this dark horrible place. We have so much yet to do before I let her go!

Artista928

It's not mets = no cure. There is no cure for any bc. All everyone can hope for is no evidence of disease. Best wishes with your grandmother.

cuggle

I understand and thanks for the clarification Artista928. That helps. I wish I could settle my mind. Don't know how to comfort my Mom

marie5890

Cuggle,

I would recommend that for you, and maybe your mom as well, to talk to your Dr about getting some anti-anxiety meds. There is enough on your plate with all of this, that you don't need to be dealing with anxiety on top of it.

Your mind going to dark place IS very hard, very real, and very understandable.

This is not a good diagnosis. For as bad as the doctor's bedside manner was, and it was awful, he was also not sugar coating how tough of fight TripNeg is, and that is true for a woman much younger than your mother. I have a friend who is 34 fight TripNeg BC. It's HARD. It's AGGRESSIVE.

Like Sjacobs said, the treatment plan for a 46 y/o is most likely going to be very different than an 86 y/o. Please understand that.

Scwilly

Tripple Negative BC has been given a scary reputation, and I do know the stats are not so good initially, however it does respond well to chemo. Try not to get worried about that, but focus on the good signs - no node involvement is fantastic. There are options for hormonal negative BC but just not long term anti-hormonal treatment. I get by by thinking - at least my cancer was not driven by hormones.

Working with the right doctors is important - and you can put the insensitive surgeon behind you and working with a MO will be so much better as they will be able to give you tx plans.

At the moment your mother and you are in the in-between stage and thats a difficult place. Once you have a treatment and care plan it will not feel hopeless.

Sarah

sandysasa

Hi I am new I am going to get my port in the morning then cmf next day I am so frighten

Sam2U

sandysasa--welcome sorry you needed us but glad you found your way here. You can do this!!

cuggle--I don't share this very often, because it's not really mine to share, but it might help pull you out of that dark place. My mother is 85 this year, not quite as old as yours, but not a "spring chicken" either. She had a doctor tell her much that same thing when she discovered her large triple negative breast cancer. This is bad, it will probably kill you, yada, yada, yada. Well this year marks the 11th year since those remarks. She is in great health. I hope your mother shares many more years with you!

Moderators

Dear sandysasa, Welcome to BCO. We are sorry for your diagnosis and the fear that comes with breast cancer but you have come to a caring, compassionate and well informed community that can offer you support along the way. Tell us a bit more about yourself so we can better understand your situation and be helpful. Stay connected here. Good luck with your port placement and the initiation of your chemotherapy. Let us know how everything goes. The Mods

StaceySue2U

I know of a local lady who got diagnosed with stage 4 BC at age 84. She's 98 now. There's always hope.

cuggle

Thank you StaceySue2U…. I think the in-between stage of meeting with the Oncologist, knowing whether or not there are mets and waiting to discuss treatment options is the most difficult part. I'm trying to focus on the positive such as the mass has been removed, nodes were clear and there are many others on here with triple negative that have responded to treatment. I'm realistic that her goals will be different at her age and the difficulty of chemo at her age is a concern. No matter how much time you have with them, it's never enough. Reading the posts from all of you has been so incredibly comforting. Yes, I'm taking some anti-anxiety medication to try and get through this right now. It's very tough being that I just went though this 4 years ago with her lung cancer. It's the same feeling but that was such early stage and she did not need treatment so this does feel scarier. Her Oncologist went to Duke and did residency at Stanford and fellowship at Fred Hutchinson Cancer Research Center here in Seattle. She's also led some breast cancer clinical trials. The fog is clearing a bit and I trust she will have some answers for us.

Meow13

Hi cuddle, I see a wonderful oncologist in Seattle Dr. Kaplan at Swedish.

Hope your anxiety eases up soon.

leenso52

Hi Cuggle,

So sorry for this tough time in your family's life. That doc was not at all empathetic. I know you heard the words, "not good..." but with negative nodes, it's not likely this cancer has spread. She may opt for no chemo even. I think the biggest concern right now is the size of the tumor initially. I guess her treatment will depend on what the oncologist recommends, especially regarding her tender age, altho her age does not preclude her from chemo, and what your Mother wants. It's really up to her to define what's most important in her life, good quality of life most likely being a priority. She can always start the chemo, see how she does, and go from there. She can also start chemo later, she can change her mind is what I'm saying.

Artista928; Breast cancer can most definitely be cured if found early stage.

Sandysasa; if you haven't already, start a discussion about what you said. That way people will respond if they're going thru it, have been thru it,etc. I'm not sure what date you came into conversation, only says February 2016. Did you start chemo yet? I never needed it for my DCIS but I GIVE it all the time. I am an Oncology RN. I hope all goes well for you, if I can help let me know.

cuggle

Thank you Meow13! My mom sees Dr. Wahl at Swedish Issaquah. Such wonderful care at Swedish. I have been SO impressed with the exception of the comment by the surgeon. I just think she could have bit a bit more diplomatic in her delivery. Leenso52 - Your feedback really helps being that you are an oncology nurse. And you are so right, all I keep hearing is "It's not good news." You are all such a wonderful compassionate group of people. I keep coming back here to read all of your comments and feel so comforted. I hate cancer. HATE IT!! ~Kathleen

marie5890

Cuggle, just wondering how your mom's appointment went today?

cuggle

Hi Marie,

You are so sweet to check in on me! The appointment went well. The Oncologist said this case doesn't totally add up. She said the pathology report is extremely unusual (read the pathology comment from my original post) and as a result she is ordering some additional types of staining biopsies of the breast that was removed. She isn't convinced this is Triple negative breast cancer as this is rarely seen in women my mothers age. She also wants to make sure it's in fact truly breast cancer since my Mom has a hx of lung cancer and there are some extremely rare but well documented cases of lung cancer that traveled to the breast. She wants to be sure before treating her for breast cancer. In the meantime she has ordered a CT/abdomen/pelvis/chest and a bone scan which take place this Friday. And then of course another weekend of waiting....... The not knowing is the hardest part. If it is breast cancer we talked about what is realistic treatment at her age. She said she would not recommend double or triple agent chemo for someone my mothers age as it could potentially kill her. She said if it is in fact breast cancer she would have radiation only. If it's breast-cancer that has metastasized then radiation is off the table and we would move to single agent chemo and other types of treatments to prolong life and make her comfortable. Good thoughts, prayers and healing energy is appreciated!

mcshep777

What treatment did your mom get? Is long term prognosis determined sometimes by how awesome your oncologist is?

bluepearl

8.5 cm is huge to have negative nodes so that in itself is suspicious. If she ever does have mets, make sure they biopsy the mets which can change hormone receptivity and if they are positive, she can do very well on the anti hormonal meds. Also, if she does have cancer, your mom has a really good immune system so suspect she will be with you for a very long time. Best wished!!!

marie5890

Cuggle, HUGS AND PRAYERS...

Sounds like your mother had a good Onc. and is being very thorough. Keep breathing !! And make sure you and your mom have plenty of laughs and good time!!

herb

Hopefully she does not have METS . If she does not she should have many years. If she does have METS ....Still have years to live with treatment. I know some who are alive 5 years or more after METS.

cuggle

Wonderful news! My Moms ct of chest/abdomen/pelvis and her bone scan were all clear of metatastic disease. Absolutely amazing news which I realize not everyone gets to hear. We are very fortunate. She had the scans on Friday and the Oncologist was very kind to send my Mom an email on Saturday (today) letting her know the good news and said she didn't want her to worry all weekend. This has been an overwhelming time for our family and I feel so blessed to have found this board. I so appreciate the support from you lovely ladies. More to come.... but tonight I definitely will be able to finally rest

Meow13

Really happy to hear of your Mom's good news. She will be OK I'm sure.