My grandma and mom both diagnosed within weeks of each other

Jennmadd

I found out a month ago that my grandma has breast cancer and a week ago that my mom also has breast cancer. My world has been rocked. My Grandma is 80 and my mom is 59.

Grandma had a lumpectomy on feb. 2nd with clear margins. We found out today that she had cancer in one of the 3 lymph nodes they took during surgery. Tomorrow we meet with an oncologist to find out what we do next.

My mom and Grandmas cancers seem very different. This is over whelming with knowing 0 about breast cancer and then trying to learn and understand so much.

I think my moms cancer is worrying me the most. Her tumor grade is 8, which is all we knew until today. Today we found out she is estrogen +(100%) pr+ (25.9%) ki-67(41.9%) her-2 (+1). I have googled so much lately that my head hurts. My moms tumor is 10cm I believe ,( she remembers them telling her that). You can see it up against her skin. From what I've been reading it seems very large. Also my mom gets lumps that grow fast and have never been cancerous. She has had 3-4 non cancerous tumors removed in the past. She also had a mammogram in June and this tumor wasn't detected then. My moms surgery is scheduled for the 21st but we still don't know if it will be a mastectomy or lumpectomy.

Can anyone tell me anything about the information I gave on Grandma or my mom? What to expect at the oncologist appointment for Grandma? And what my moms test results mean?? Is she at risk for it to spread?

Any info is helpful. Thank you for taking the time to read

I forgot to add that both have IDC

ceanna

Jennmadd, I'm sorry you find yourself here, but it is a good place to be. There is a lot of info here and a lot more helpful than Googling. The hardest time is just getting a plan in place and gathering info. Start to write down your questions for the doctors. Go with your grandma and mother to appointments if you can. Get second opinions as needed. This website has a search feature and you can search by keyword once you have more information and get connected into threads here dealing with specific aspects of diagnosis and treatment. Keep asking questions here. Best wishes to your mom and grandmother.

Jennmadd

thank you so much for your kindness. Everything is so overwhelming right now. Waiting for answers is very hard. Hopefully we will have more at my grandmas appointment tomorrow. They have my full support. I will be there every step of the way. I am glad I found this site. It's hard to not google for answers.

Moderators

Dear Jennmadd - We're terribly sorry for what you and your family is going through, but at the same time we're glad you've found this wonderful community to share, vent, get information and great support.

If it helps, take a look at our section for those just diagnosed called Breast Cancer 101 -- Breastcancer.org, designed to help members, family and caregivers learn and understand more about diagnosis, treatments, pathology reports, questions to ask the doctors and much more.

Hope this helps!

Please let us know how you, your mom and grandma are doing. We're here for you!

The Mods

ceanna

Jennmadd, how did your grandmother's appointment go today? I hope you received a lot of encouraging info. The diagnosis does seem overwhelming, especially because you're having two loved ones at the same time, but it will get easier as a treatment plan is put in place. Keep us updated and ask questions or use the search feature here before/instead of visiting Dr. Google!! All the best!

Jennmadd

We had an appointment with the radiation oncologist today. We found out that my grandma has stage 2a. 1/4 lymph nodes had cancer. She will get 6 weeks of radiation once she's healed from her surgery. They will also do genetic testing on the tumor to see if chemo is useful. I recorded the whole appointment and the dr. actually took notes for us and drew pictures to explain things. She was very nice. We have an appointment with my moms oncologist on the 15th and a plastic surgeon. She still needs an MRI and a PAT scan. We went out to eat afterwards for my birthday and even thought I felt I was doing a good job keeping it together I couldn't eat without feeling sick. I just told my mom and grandma my stomach wasnt feeling good.

I feel good about my grandma. We have answers and we have a plan. I'm feeling sick about my mom though. Not knowing is the worst.

I think my friends and family are sick of talking about it. They would never tell me that. But I know I'm tired of thinking about it constantly. Is that normal? For it to consume you like that?

Thank you again for your kindness and for thinking of us.

Jennmadd

thank you, I am creating a folder for both of them with their reports and notes.

Jennmadd

I was looking at my moms pathology report and her position of the tumor says 3:00 on her left breast. But the tumor is on the inside opposite the armpit. So wouldn't that be 9:00? How important is tumor location? Should I call and bring this to the dr.s attention? She has appointments starting this week and I believe they have that information wrong. She meets with a plastic surgeon and oncologist in two days. If they are looking over her file I want them to have the correct info before we get there.

keepthefaith

jenn, so sorry you are dealing with this. Yes, it's pretty normal for a DX like this to consume you. It's great that you are there for them, even though it is difficult. I hope they get through their treatments well. Once you have more information and she starts treatment, you all will probably start to feel better.

Denise-G

So very sorry you are dealing with all of this. Wanted to give you hope. My mom, sister and I were all diagnosed within 3 years.

Can't imagine within a few weeks. My sister and I were Stage 3 - my 80 year old mom was Stage 1. We've been through a tremendous

amount collectively, but we are all here and doing well. My mom is now 83 and thriving! My sister and I were in our late 50s and doing

fine...

Sending a hug! You can get through it!

Jennmadd

Thank you Denise. It is encouraging to hear.

For those of you following,

Today we met with the chemo oncologist and the plastic surgeon for my mom. Their is concern that the tumor is invading the skin. Tomorrow my mom gets an MRI so we don't have that info yet. But the oncologist took one look at my moms breast and said she would definitely need chemo.

The plastic surgeon appointment was a ton of info. The plan is to do a bilateral mastectomy on the 21st then put expanders in on March 9th.

The amount of appointments needed with all these dr.s is overwhelming. I feel like this is going to be all we have time for, for a long while. It's crazy how fast everything is happening. It's crazy to imagine my moms body and mind handling all that is about to happen. Surgeries, chemo, radiation, hormone therapy. Lord please give her strength

Jennmadd

as I sit and wait for Grandma to get done with mapping for radiation I will update you all on my mom.

She had her bilateral mastectomy yesterday. It went great! The Dr. was very happy with how it went. The tumor did not invade the chest wall which is great news! She feels like they got all of it. She did take some suspicious lymph nodes from both sides and we will find outcomes about those later this week. The MRI my mom had done last week showed some things in her right breast as well. So taking both was a good decision if for nothing else, piece of mind. We will learn a lot from the pathology report. We will find out if the right breast also had cancer. If the lymph nodes have cancer. And if the skin where the tumor was pushing on had cancer.

My mom is doing so well! She got to go home today and the pain has been controlled. I'm feeling so blessed about that. That stupid tumor is no longer invading her body! It's been evicted! Let the healing begin!

MTwoman

I am so glad to hear that your Mom went through surgery so well and her healing journey has begun! Once they have all of the pathology back, they can finalize her stats and treatment. This is a big turning point!! so glad that she has controlled pain and is now at home where she can really recuperate Thanks for updating us!!

ceanna

Glad your mom is doing well and now the healing starts. Hope your grandma's treatment goes well too. You've been the caregiver but I remember to take care of yourself too!!! Thanks for the update.

momallthetime

Jennmadd you have done more than a terrific job! How lucky that you guys are a close bunch. It's great that you were able to line up all these appointments fairly quickly. Will they be going to the same Centers?

Things to keep in mind: You said you were having folders for them. Excellent. Ask for a copy of each blood test. If you have a portal, good. I print out the BT's also, I have stacks of paper. Also, every scan, have a copy of the report and the CD. You are entitle to it. Either they burn the CD right there or they will mail it to you. The report if it is sent to the doc ask for a copy. ( for sure making things easier if at a spare of the moment you need to go for a 2nd opinion and you don't need favors from the doc's office to send you all the info)

Also, as an aside, I found it beneficial to have my daughter's PCP know of all the steps we take ( I am my daughter's advocate, her pain in the neck, she is a very independent young lady but prefers not to deal with the clinical aspect)., so every info is regaled to Primary, and I even share the results of all the scans (which are many at this time), so I always could call him, even thou of course details of this sort it's out of his league, but he is still a doc. Also, we ask for the scanning place to send him a copy of the reports, so sometimes we get to see them b4 Onco tells us, because he is more accessible etc...

Also, I would suggest you ask your MOM and Grandma to give you Power Of Attorney (it could be just for health), so if you have to speak on their behalf and if you ever encounter a bitter medical staff (which you do from time to time), and they give you a hard time in discussing an issue with you, you could show them that you represent them. Also, health Proxy, pretty much the same, naming you as a person of contact if needed, and information could be freely be discussed with you.

Drink, eat, take something to sleep if you need to, it's a tough road, but it's doable.

Hugs,

Jennmadd

Today's post op for mom went good. She is healing well and will get her expanders and chemo port in on the 9th. We got her pathology report back. No breast cancer in the right breast ( it was a fibroadenoma) no cancer in the 4 lymph nodes they took from the right side. No cancer in the skin where the tumor was pushing out on. 2/7 lymph nodes on the left had cancer. Largest measuring 12x6 mm extracapsular. The surgeon also took another two lymph nodes on the left side farther away from the breast and they came back negative. Today was an emotional day for mom seeing her chest for the first time ( The surgeon did an incredible job) and hearing from two dr.s that she will for sure need chemo and radiation. We will meet with the chemo oncologist on the 2nd and come up with a treatment plan. I will urge my mom to join for support to help her through chemo and radiation. She seems very afraid of the thought of radiation. And chemo. Oh and I almost forgot! Her tumor was a lot smaller than we had guessed. It was actually 5x4 cm. We had guessed 10cm! For staging that puts her at Stage llb. We will find out if the oncologist agrees with that staging.

Grandma saw the dr. Today also and had the fluid drained from her breast. With radiation starting the 13th they needed the swelling to dissipate.

Just wanted to give you all an update. Thanks for the advice and kind words

ChiSandy

Glad your mom’s cancer was less extensive than feared. BTW, there’s no such grade as 8. Grade is designated as either 1, 2, or 3. Those grades are determined by point values for three characteristics (differentiation, tubule formation, mitotic rate), each characteristic being scored 1, 2, or 3 in terms of aggressiveness. The lowest number of points a tumor can have is 3, the highest 9. 3-4 points=grade 1; 5-7 points=grade 2; 8-9 points=grade 3. So your mom’s tumor, having a points score of 8, was a grade 3. She will likely have her chemo first and her radiation after her last session.

That they’re scheduling your grandma’s radiation tells me she probably won’t be getting chemo. (The genetic testing on the tumor is called OncotypeDX, and it determines how much benefit chemo would give vs. hormonal therapy alone. The lower the score, the slower-growing any tumor cells that might remain—and chemo works best on fast-growing cells). At age 80, her doctors need to take into account any other conditions she may have at that age that would make chemo more risky than beneficial. They prefer 4-6 weeks post-op for the breast to heal before starting radiation.

Jennmadd

Hi Sandy- yes I did learn that about the tumor grade after I had posted that. Learning a little more each day. I asked the oncologist if she was going to do the oncotype test on mom and grandma and she said it wasn't necessary since they won't do chemo on grandma because of age and they will do chemo on mom because of the high grade and size. I thought it would just be more info but she said no need. Does healing need to happen before chemo starts? Thanks for your in

Jennmadd

yesterday we met with the chemo oncologist and our plan changed a bit. She wants to start chemo in two weeks and wants to hold off on reconstruction. There were a couple things on the new pathology report that the other dr.s didn't go over and We didn't know what they meant. Angiolymphatic space invasion- multi focal

Dermal lymphatic space involvement- present

Still not real sure what it all means. But the oncologist didn't want to wait to start chemo. I did get emotional ( I held it together) hearing high risk feature repeated over and over. My mom could see I was upset. She's actually worried about me which is the last thing I want. We are pretty close so hiding my emotions from her is not easy. It was a hard appointment. The plan changed. But we are gonna have to learn to roll with the punches. I hate cancer. I hate that anyone has to go through this, let alone my mom and grandma. These two women are my biggest fans. And I am there's. I just want them to be ok.

Adriamycin and cytoxan every two weeks for four doses. Then Taxol every week for 12 weeks. Then we wait four weeks before starting radiation. I'm assuming we will meet with that dr. Soon. Full body scan and echo were ordered also.

MTwoman

Jennmadd, hopefully someone else with more experience with this will come along soon to share their knowledge with you. The basics that I understand about angiolymphatic and dermal lymphatic space invasion is that they are signs that cancer cells have invaded blood or lymph vessels.

I am sorry you're still dealing with the 'uncovering' phase. It can be so disorienting and alarming. Keep breathing and taking good care of yourself so you can continue to provide loving care to your Mother and Grandmother. ((Hugs))

Jennmadd

mtwomen- Thank you so much for your response. I thought I was beginning to "handle" things alot better than in the beginning. Hearing new news does through a curve ball and worked me all up again. Now my mom is looking at old mammograms from 2014 and found that the cancerous tumor she had that was a birad 5 in January also was on that mammogram as a birad 4c and 6mm( instead of 5 cm that it grew to). This makes me so angry! She went to several dr.s and after one told her it was nothing she forgot about it. If someone had sit her download and told her their concern. Told her that their is a 30% chance that she has breast cancer. She would have done something then. I know we can't go back in time. And i don't know if this info will give her dr.s today any insight about my moms cancer. But I'm so mad. I went with her to some of her appointments back then. Why didn't I see what was happening? Why didn't we get a biopsy???

momallthetime

Jenmadd if you go through the different threads, you will see so many people fall through the cracks because of doctors that are careless, and care less. They think that making the patient feel good at that moment is worth something. We do tend to negate the bad stuff if we hear hope and that's I think the nature of people. Maybe so much fear was going on at the time, that only the possibility of it not being serious is the thing that stuck. We all have our regrets. Maybe you could be more aware for yourself.

You know with such a strong family History, it's a good idea to have yourself checked regularly. You are doing what you can now, and you dealing with lots of stress. I could imagine you are angry, and it won't go away so fast, but be careful it should not be your companion.

ChiSandy

Jenmadd, I hesitate to suggest this because it feeds into the stereotype of my former profession (I’m retired) as grasping, litigious and opportunistic; but I would urge your mom to consult a medical malpractice attorney (or have you make the appointment for her and perhaps accompany her if she consents). Imaging categorized as BIRADS 4c without ordering a followup biopsy is malpractice. (Even though 80% of BIRADS 4—all subcategories combined on average—turn out benign on biopsy, the likelihood of malignancy rises as you go up the alphabet. 4b is usually 40-70% likely malignant, 4c higher still).

MTwoman

Jennmadd,

I totally understand where you're coming from (" But I'm so mad. I went with her to some of her appointments back then. Why didn't I see what was happening? Why didn't we get a biopsy???"). And I believe that ChiSandy is 100% correct. At the same time, you (and your Mother and Grandmother) have a lot on your plates right now. I would gently encourage you to focus on the here and now and how you expend your energies. As much as I agree about the absolute shabby way things have happened, you only have so much mental and physical energy. Trying to stay current on where each of your dear ones are in their investigative and treatment journeys must be difficult. Starting on the "shoulda' coulda' woulda's" may be counterproductive. Even though it might feel easier to be able to direct some of your understandable anger at the past, it can also be a distraction.

I'd think about medical malpractice in the future, once your loved ones have treatment plans that they (and you) are confident in, they have their healing routines in place and you have a little room to breathe and take on another project. Make no mistake, any legal proceeding will be exhausting.

thinking of you and yours ((hugs))

MinusTwo

I'm in agreement with MTWoman. I dealt with one person with cancer - me. I know it is sometimes harder to deal with a loved one's illness. And you have TWO women who are depending on you. Let the past go for now and focus on healing attitudes and plans.

Jennmadd

Thank you ladies for your responses. I agree that focusing on what we are faced with right now is what we need to do. Just thinking about the shoulda, woulda, coulda brings me to tears instantly. I think that it's too much for me to take on right now.

Jennmadd

hello ladies,

I am encouraging my mom to join cause I think she will get answers and support from you ladies. We went in for my moms second chemo treatment and met with the oncologist. She had a CAT scan yesterday. The Dr. started with " I have bad news". She pulled up the images and pointed to several things on the picture. I tried to focus on what she was saying but I only heard things like multiple locations of concern. Holes in the bone in multiple spots. The dr confirmed with the radiologist whosays my mom has cancer in her spine. They are also concerned with other areas. She will get a rib biopsy next week and full bone scan. Stage 4 ladies please chime in. My mom nor I had any idea what kinds of questions to ask. What do we do now? They stopped chemo. They will also do a brain scan.

MTwoman

Jennmadd, I am SO VERY sorry for the news you and your Mom got yesterday. I would recommend that you go to the forum "for family caregivers of . . . women with a stage IV diagnosis" and ask you question there as there will be people who can help you help your Mom. She may want to post on the Stage IV forum (which is only for women with stage IV). Sending you both healing light and ((hugs))

momallthetime

Jennmadd it's a terrible scary moment, and very overwhelming. You could go to Stage IV Bone mets thread, there is a very warm knowledgeable bunch of ladies, everyone will chime in. Having bone mets it's usually how this travels. But it's definitely doable, people leave years and years and quite well. There are so many many treatments that she could be on. First go to the post, make a synopsis of all that was going on, and you will get advice. It's interesting that they should wanna do a biopsy so soon if you got info in February. But, it's a good idea.So they will target as much as possible. At least doc seems to be doing their job. I'll join you at the other thread.