Mother just diagnosed...confused and angry

sbf-ok

My mother was diagnosed with BC on Monday. Th surgeon that performed the biopsy had an awful bedside manner (didn't knock before coming in the room leaving my mom exposed to the people passing by, made it obvious that he didn't review her chart or images, told her she had cancer while doing an examination, told her she would need a lot of chemo before a bilateral mastectomy, did a core biopsy and was puzzled as to why she was bleeding so much (she is on a blood thinner), dismissed all of our questions, and summed up the visit by telling her that if she was stage 2, she has a 40% chance of surviving, Stage 3 even less, Stage 4, absolutely no chance. He then said she needed a CT scan bc he thought she probably had mets (right after telling her his prognosis for Stage 4!!) On the way out, the nurse told her that the results would be in Wednesday at the latest. So, I took her home and there she sat waiting for the phone to ring. Wednesday afternoon, she called to see if they had the path report. She left a message and no one returned her call. Repeated this on Thurs and Friday morning...no call back. Friday afternoon, the receptionist answered and told her that they were not in the office that day and her messages were still there. She then told mom that sometimes they call from home over the weekend. So, she stayed by the phone all weekend. Monday came..she called..no response. I called her primary, who then called the surgeon to inquire about results of CT and path. The surgery nurse called 20 minutes later and told her she had an aggressive cancer. Primary called me back and read me the CT report (no mets!! Thank God!!) and her path report said "invasive mammary carcinoma". I went the following day and picked up a copy of CT and path reports. Her Grade is a 1 and the report says "invasive mammary carcinoma- Colloid carcinoma type". CT report says "irregular lobulated mass in left breast and abnormal round Axillary LN 4.6x3.2 cm." Everything else in the report was clear. The tumor marker analysis was ordered through a different lab so I do not have that report.

I am sorry to go in to so much detail, but I am hoping that describing her treatment will help you to understand why I am so frazzled and why I am so confused and scare.

I have so many questions, and have spent several hours looking up as much information as I can to understand all of this. I am really hoping one of you can assist me in making sense of this all.

-If the histological grade is 1, why would they refer to it as "aggressive"?

-How long do the other path tests take?

-Can a mass be irregular and lobulated?

-Is it normal for her axillary LN to be larger than the actual mass? (Mass size was estimated by surgeon to be between 3-4 cm...it was palpable so he judged it by feeling it)

-Everything I have read never mentions Stage 4 having a 0% survival rate. Is that true?

-Is the core biopsy enough to type the tumor as colloid?

-Does the fact that she has congestive heart failure and a fib mean that she won't be able to tolerate treatment?

-Did I do the right thing in scheduling her an appointment with a different surgical oncologist at a different hospital? Should I have made the appointment with a medical oncologist?

-Am I making a mistake by doing all of this for her? She shut down as soon as she heard the GS say "cancer" and has not even attempted to look anything up. I did explain what I read on the reports but she has not done any research on her own.

-What is the best way to support her through all of this? How can I help her to have an optimistic outlook?

-How do I keep my own fear in check so I do not contribute to her anxiety and stress?

I do apologize for rambling, I know this post is long! Thank you for taking the time to read it. And thank you in advance for any feedback.

chrissyb

Hi sbf-ok and welcome to BCO. I'm so sorry that your Mom has been told that she has Breast Cancer, a dx no one ever wants to have.

The treatment she received from that doc in totally unacceptable and I'm so glad you have scheduled another appointment with another doc and treating facility......the very best thing you could have done for her. Please don't worry about your Mom 'shutting down' as it is a very normal thing to do while she is trying to process her dx and all that it entails. She will I'm sure have a little more interest as things move along.

Now, for your questions:

Grade I is not aggressive in it's self as it is slow growing but if the cancer has left the lobe or duct and infiltrated the breast tissue it will be classified as invasive and if it's invasive there is a possibility of it leaving the breast confines and setting up home elsewhere in the body.........that is why all scans are done at staging to make sure that the cancer is still only in the breast. Having said all that, it may be that your Mom is stage I.......which means size and grade III which is aggressive (fast growing). I'm sure all of this will be clarified by the new doc when you see him/her. The other path tests can take about a week to get back so you should have access to those soon.......those tests include testing for the Her2 + or -, ER/PR + or - which will help in deciding what treatment your Mom needs. There are a lot of different types of Breast Cancer some more aggressive than other and if she has one of those it doesn't matter that stage or grade she is the cancer itself is aggressive.

Lobulated just means that the mass is in the lobe of the breast and irregular means not round or oval......very standard terminology.

The LN are the filters of our system and hopefully catch anything that is not supposed to be there........it's possible that your Mom's LN is doing it's job and reacting to the cancer in her breast just like you get a swollen gland under your chin when you have a throat infection.......that also is a LN doing it's job.

Stage IV is classified as terminal because there is no hope of a cure BUT, that is not the end of it. Most stage IV people do live with treatment for quite some time after dx.......I am stage IV and am still living well after almost seven years. Please don't stress too much on that point.

A biopsy can dx if the tumor is colloidal or not as that depends on how quickly the cells divide.

The fact that she has heart problems means that she will have to be closely monitored and treatment adjusted for her tolerance so treatment is still possible.

The best way to support her is just to be there when she needs you, ready to have the conversations when she feels like them. When she is in treatment, try to help by cleaning the house, making meals, taking her to appointments and anything else that she may require. You will find that sometimes she will just want to sit with you and that is support enough........just knowing that you care.

Trying to keep your own fears in check is not so easy but by coming here and reading and learning you will feel more confident and in control.......you can also pass on this knowledge to your Mom if she is receptive.

I do hope I have helped a little to put your mind at ease.

Love n hugs to you and your Mom. Chrissy

Moderators

Hi sbf-o, welcome to Breastcancer.org! We're sorry for your mom's diagnosis and for all you're going through right now... We understand your fears, and we know how confusing the first days and weeks can be, so we hope you're finding support and information from the community here!

If it helps, take a look at the section Breastcancer 101 from our main site, designed for those recently diagnosed to help understanding the diagnosis, types of cancer, differences between grade and stage, treatment options, etc.

We hope this helps, please let everybody know here how you both are doing.

Best wishes,

The Mods

SummerAngel

I want to echo what the others have said and also to mention that if I were witness to the terrible treatment your mother received by this doctor I would absolutely report the man. What he said was not only frightening but completely untrue! The 5 year survival rate for Stage II cancer is 93% (cancer.org), and that includes both slow-growing (which your mother has) and fast-growing cancers.

sbf-ok

Thank you all so very much for your replies!! They honestly helped ease my anxiety. I have been reading all types of threads since my mom was dx. The sheer bravery and strength that I have witnessed is amazing...you ladies ARE amazing!! I am blessed to have found such a wonderful forum to voice my fears, frustrations, and questions. Thank you! Thank you! Thank you! ❤️

A few things have happened since my last post.

Mom finally has the results of her IHC report. 90% ER+, 3% PR positive, and the HER 2 was equivocal.

She went to the local hospital and got her Mammogram and US records (reading these reports really escalated my fear and anxiety) I had originally thought that the mass in her left breast was 3-4 cm. According to these reports, it is more like 8x4 cm (location is 1-3 o'clock). I also discovered that there is a spiculated 10x8 mm mass in her right breast. The GS did not biopsy the right breast or the LN that is obviously huge. Naturally, this makes me believe that she has cancer in both breasts and it is going to spread before she has a chance to get treatment. Tuesday feels so very far away. This is especially true being that all of this started Oct 13. I have read so many other threads, and it seems like her having to wait a month after an abnormal MG and US (classified as Birad 4 ) to get a biopsy is absurd. I have also found that every time there is a ray of hope (colloid, grade 1, ER+, etc.) I read something that destroys my optimism (very large mass, huge probability of LN metastasis, a cancerous looking spot in her other breast etc) I have also noticed that the skin dimpling on her left breast seems to be getting more pronounced by the day. She also has a small scan above her nipple that I am praying is just from her biopsy..but the other 3 places cannot be seen anymore.I had myself convinced that she didn't have IBC, but now I am back to fearing that is what she is up against! Where do you ladies find the strength and determination to fight something so scary? How do you find hope in a situation that seems, at times, hopeless? I have always been quite the pessimist, but I am trying so very hard to be optimistic. I just honestly feel like I suck at it!

SummerAngel- I have every intention of filing a report on that awful man!! Being that they still had mom's path reports, I felt it best to tread lightly being that they tried to keep us from obtaining all of the information. I took my mother back yesterday to pick up the other portion of the report. The nurse tried to tell me that it was fresh off of the fax (although the date and time stamp indicated that it was sent on Monday). I am assuming she was trying to cover her butt for not returning any of the messages we had left....once again! I had planned on filing a complaint once she had the reports in her possession, but now we have to wait for the FISH results. We are both so very ready to be done with that place! I am not sure if I can be cordial if I have to face the GS or his nurse again! I really wanted to use VERY colorful language to describe my perception of them...but I was able to bite my tongue (had I bit in any harder, I would probably be without a tongue lol) Thank you for giving me accurate statistics. I was sure I had read otherwise, but I doubted myself because I am not a dr. It is sad when you can't trust what a person says..especially when they pledged to do no harm.

KayB- Today my mother showed interest in looking up cancer fighting foods. She also inquired about what I had learned from my research. I took your advice and was careful not to overwhelm her. I went slowly and watched for any indication that it was too much. She did very well processing the IHC results. I was very proud of her! She also laughed (a REAL laugh) this afternoon. It was a beautiful sound that I have truly missed the last couple of months!

ChrissyB- The statement you made about the LN's made a lot of sense. I have read so much about LN involvement over the past week, but your description made all of that info come together. There is so much medical jargon to get through. It is very helpful to get a definition that doesn't require having to open 800 new pages to google the meaning of each word I do not understand.

I just realized this is also a very long post. I do apologize. This place is really the only one that I feel I can say what is on my mind without judgement or inducing fear. Thank you all again!

ChiSandy

See, this is why I’m not a fan of having a general surgeon do breast biopsies, rather than a breast radiologist or breast surgeon. You didn’t say where in OK she lives and is being treated: is it a small-town community hospital (or small regional medical center serving a few rural counties), or is it a university medical center (especially with a breast and cancer center)? If at all humanly possible, she should try and get a second opinion at the latter. If she’s close to Tulsa, CTCA has a hospital there. CTCAs usually have breast cancer specialists in surgery, radiology and medical oncology.

I’m sure there are conscientious general surgeons out there with experience in breast cancer surgery and who have kept current with the latest research and treatment developments. But in my experience, they aren’t representative of the typical small-town (or even urban/suburban) community-hospital surgeon. (and I say that, counting several general surgeons among our circle of friends & colleagues).

sbf-ok

The GS was located in Shawnee at Integris. She had her mammograms and US in our tiny town(Seminole). Her primary referred her to Shawnee...so that is where she went. She has an amazing primary, so we trusted that she knew what she was doing. I knew that her first choice (Mercy) denied the referral. I am sure this was because the nurse screwed up the referral because that is where her appointment with the new surgeon is this coming Tuesday. The surgeon specializes in breast surgery and has been highly recommended by my aunt who just finished her treatment. I actually contacted CTCA last week. They seemed like they were ready to help until I told them my mom was on Medicare (went into effect Oct 1). Had she kept her previous insurance, they would have accepted her. Once Medicare was mentioned, the conversation ended abruptly.

Once CTCA denied her, she decided to go to OU (my other aunt had her breast sarcoma treated there and was pleased) or Mercy. We called both...OU had a pretty long wait time so we went with Mercy. The bright side of Mercy is that her cardiologist (who she loves) works there. I have heard that Mercy is great about collaborating with other necessary physicians. I really hope this is the right choice for her. If not, MD Anderson is not out of the question. Granted it is almost 400 miles away, but I would take her across the country to get her where she needed to go!

ElaineTherese

Hi!

I have been treated by Mercy Oncology, though with the Norman branch. It's gone very well, and I love my MO. My Radiation Oncologist works at Stephenson Cancer Center (OU) for a few days, but I get his services here in Norman. He actually likes working in the regional hospital better because he can spend more time with his patients here. My surgeon was affiliated with the Norman Regional Breast Cancer Center, and he was fine. I got a lumpectomy, and it looks quite nice. Best wishes for your Mom!

sbf-ok

Thank you for the well wishes. She really needs them right now!! The information I have received from everyone has helped!

A great friend of mine spoke highly of the Norman branch. She loves the nurse navigator (Karen, I believe) and her oncologists. I am so glad that your treatment is going so well!! It is wonderful to read positive posts....especially a fellow Okie!

sbf-ok

Today I took my mother to meet with her surgical oncologist. We were both pleased that she was very thorough and there is finally a plan being put in place. Sadly, every hope of this being a less aggressive bc was destroyed today. She is ER+, PR+, and HER2+. Due to her symptoms, I felt that IBC was a possibility. Her dr seemed to think so too (I was really hoping it was colloid). She performed a skin biopsy and set mom up with a breast MRI and a US guided biopsy of her right breast for next Tues. She will have an appointment with an MO soon. SO is certain there are several axillary LN involved and has already stated she will remove them all during surgery. SO was upset that the previous dr's dropped the ball. Had they done what they were supposed to, she would have already began treatments. (Her journey began October 1st) Although mom really likes her SO, I can't help but to feel as though I should get her to MD Anderson in TX. I am so overwhelmed (I was notified yesterday morning that my brother OD'd so I am planning his funeral, I have 3 kids...my oldest has Crohn's, and I am now trying to support my mom and help navigate her through this...my dad passed away 3 years ago from lung cancer). I am so scared and I feel so hopeless and helpless. I feel like I am not doing enough for her or my babies that have had so much thrown at them the past 2 weeks. I just don't know if I can be everything that everyone needs me to be.

bride

sbf,

I'm sorry you have so much to deal with right now. As a triple positive IBCer, I know how overwhelming the DX feels to both you and your mother. Yes, there's an ungodly number of hurdles to deal with at the beginning. IBC, by definition, is always considered invasive and aggressive -- my MO told be that's because it involves the skin and it doesn't form lumps per se. The treatment is long and aggressive, too. But, I promise you it's doable. And, yes, there are Stage IV survivors.

I hope your mother is seeing an MO, she'll have a lot of chemo before surgery and that means lots of blood work to keep track of. From my own experience, I know she'll be told to drink endless amounts of water. But water washes out sodium, so keep your eye on that. The American Cancer Society gives away free plastic folders with sections for labs, scans, other tests, etc. Keeping records is important, only your mother will be the constant part of every bit of her care. The Cancer Society's folder will help you both get organized. (Don't be surprised if you need a larger folder -- I ended up with 6 inches of documents.) Information doesn't always travel as fast as different appointments so knowing what's been done and said helps.

Be sure to write down any side effects and questions. If you're the one going with her to her appointments, please make sure her docs are aware of the side effects and that all of her and your questions get answered. The nurses doing the infusions are a much overlooked resource: they have good information.

And please talk to the RO before your mother makes her final decision on reconstruction. Also, even if your mother has only one lymph node that is questionable, an ALND is mandatory with IBC. Like your mother, I started out with my local, tiny town breast center. Since I had my mammo two days before Thanksgiving, I was told I wouldn't have a biopsy till the following Monday. Fortunately, the radiologist on duty was young and did it that day. Without waiting for the path report, he DXed me with IBC. His staff told me I needed to see a breast surgeon. While waiting for the biopsy, I looked up IBC and knew I needed a MO. Turned out that no doc in my town had treated a case of IBC in 20+ years. And my original path said IDC (despite obvious skin involvement). So I've had all my treatment at a NCI designated center some 80 miles away. They redid the mammo and reread the path slides and then began treatment. The initial onslaught of tests seemed endless, but it does let up. Try to remember that your mother is a partner in her healthcare and has the right to be heard and to question

It's not easy, but your mother and you can handle this.Please feel free to post in the IBC forum: rants, weeping, anger, and questions are all welcome. So are PMs. BCO is a tremendous support network--use it as you need

my best,

bride