Overwhelmed and heartbroken.
My wife has been diagnosed with breast cancer on 1/7/19, and we are completely overwhelmed and unsure of every decision that will have to be made in the very near future.
Her tumor is very solid and painful and has increased in pain over the last month or so. Her tumor is attached very solid to her ribcage along the left side of her left breast. They did imaging and her lymph nodes are "puffy" in her left armpit. They did a botched biopsy of the tumor (trying to avoid damaging her implants, tore her skin with the extraction tool, and needed three stitches), tumor came back being cancer. They did not biopsy the lymph nodes because they felt my wofe had gone through enough with the tumor biopsy. They are still doing more tests with the biopsy to find out the details of the cancer.
Since the biopsy, she has been experiencing PMS symptoms too early, very mild swelling on the left side of her body (arm, hand, foot), and feeling like she is having a chemical imbalance overall. I suspect, based on the exhausting research I have been doing since Monday, that she is having issues with the estrogen type cancer.
She has been training for a body building competition for March of 2019. We have been vegan for about 15 months. Up until she discovered the lump about a month ago, we were consuming soy products such as tofu and tempeh to help with attaining proper protein levels. We have ceased all soy intake.
She is 40, strong, beautiful, and my soulmate. On the exterior, she seems like she is trying to be strong, but I can see it in her eyes that she's scared...and I'm just falling apart.
The unknown. The looks the medical staff give each other. The conflicting data on the internet. The nauseous feeling when trying to scramble for the right medical center/doctor. Knowing she will have to go down a road the nobody should...is incredibly overwhelming for us.
We need to make the right choices soon, but we don't know.
She is scheduled for Xray and bone scan, and we are going to talk to a plastic surgeon tonight.
The docs confidence with treatment and recovery for my wife has me struggling to trust anything. What I see online vs the confidence of the doc, has me continuously sick to my stomach for the love of my life.
Looking for guidance in making my beautiful wife's recovery successful and her longevity in this life to be well into our 80's.
Thank you.
HeartbrokenHubby
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Dear Hubby, Your feelings are much like most of us experienced, - you are not alone!! This is the toughest part, so hang in there! Once you and your wife have more answers and a treatment plan, you will feel much better!
Don't trust everything you read on the internet!!
Go to the best drs that you find, - and even then, get second opinions if you are not completely confident in what they tell you.
Take a deep breath, and know that you and your wife will soon be on the path to recovery!
Hugs to you both from NYC!
PS, There are other husbands on these boards, but if you'd like to be in touch with mine, I am sure he would message with you! Like you, he is wonderful!!
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Yes, NYC girl is right - the beginning is tough. The waiting and the not knowing are enough to drive you crazy. Take a break from Dr. Google and spend some time doing something together that you enjoy. Certainly, no one wishes to go through this, but it is manageable and you are on the path to healing. It sounds like your wife has an awesome support system in you and that is super important. Definitely feel free to lean on the ladies and gents on this forum, as well - there are some awesome people here!
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HeartBrokenHubby - Your are not alone with your feelings and emotions. It does get better once you have more information and a plan in place. Don't believe everything you read online. Doctors will tell you to stay away from Google. Right now just be there for her and let her know how much you love her. We are all here for you and your wife!
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HeartbrokenHubby,
Welcome to Breastcancer.org. We're so very sorry for the reasons that bring you here, but we're really glad you've found us. As you can already see, our Community is a wonderful source of support, information, and advice -- we're all here for you and your wife!
As has already been stated, the beginning of this journey is always the toughest. So many unknowns can make things unbearable, but we assure you: the more you find out about what you're dealing with, the better you'll feel about getting a treatment plan in place and focusing on getting past this. In the meantime, our Community is here to help answer any questions you may have and support you the whole way.
As some have also mentioned, there's a wonderful forum here for Caregivers, Family, Friends, and Supporters, where you can meet other partners of loved ones who have received a breast cancer diagnosis. Make sure you're getting the support you need as well, in order to help support your wife.
Thinking of you both!
--The Mods
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HBHubby- I'd also add in to start a note book. In it write down everything you know so far, and which Dr you saw. And write down the questions you have - it makes it easier on you, you don't forget to ask, and you write their answers down.
At each Dr appt I had my Q's and their A's. It also helps that you go to each appt with her, two sets of ears hear more than one.
Best wishes to you both.
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All of what you're feeling and expressing is well known around here - fear, sadness, disbelief, mistrust. In the beginning, it's often hard to find much hope in the middle of despair. It is scary. And it will become easier to deal with as you get more info.
I recommend second opinions on everything. Even when they agree - it's good to hear it repeated and helps to ease your mind. And there are advantages to both smaller community facilities and larger academic ones. When the treatment options seem to be the same - go with where you feel the most comfortable.
I'm sorry for you both. It's a hard road sometimes, but it's great that you have each other. Check in often and ask away!
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Just remember - it's not an emergency --- I'm into my 3rd month of second opinions and testing. Your pathology report will probably tell you if the cancer is fast or slow growing. The doctor of a friend of mine told her that her cancer had probably been growing for 7 or 8 years. Mine is also a hard lump and feels like it's attached to my side rib -- but they say it's not. I also had two screwed up pathology reports - both times at different hospitals they couldn't grab the tumor because it would snap back -- One hospital had to make 3 insertions. Neither hospital was able to get a complete report because of small samples. But still everything is working out fine as it will for your wife. Remember most breast cancer is curable today. Ask tons of questions on this board and everyone will help you --- I do read google, but I have gotten most of my questions answered by the people on this board. This group really helps you make very hard decisions and then you are comfortable until the next decision has to be made.
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heartbrokenhubby-- the uncertainty can be overwhelming. When I was initially diagnosed I mistakenly tried to find out answers from Doctor Google. It was a huge mistake. Until you have more information it's best to listen to your doctors ,ask plenty of questions and then start doing research. Get second or even third opinions if you're not satisfied. It is a very tough time for you and your wife. Try not to panic until you have the results of all your tests. These threads helped me a great deal when I was initially diagnosed and waiting for further test results. The support is here. Best of luck to you
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Sorry to hear about your wife. As others suggested, it's a good idea to get a few opinions.
I got a number of opinions and chose a comprehensive breast center for treatment.
I met the breast surgeon, oncologist and plastic surgeon before my treatment began. They determined my cancer was triple positive and a treatment plan was set up where they would do chemotherapy with targeted therapt first, then surgery, and then continue with targeted therapy and anti hormone therapy.
Before my treatment began I had a second ultrasound, a PET/CT (not standard due to the radiation but there were reasons to do it) and a breast MRI. I then had a port placed and a week later and about a month after I was diagnosed I began chemotherapy.
The chemotherapy wasn't fun; it lasted 4 months, but it wasn't as bad as I thought it would be.
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Dear Heartbroken, you are getting good advice here and i just want to add my encouragement. I'm a former fitness trainer, got diagnosed with pretty advanced b.c.in 2015, spent 2-1/2 years going through almost everything they offer against b.c.and now I'm back to my former Super Hero self.A challenging time coming up for you both, but nothing you can't handle together. Your wife sounds like a tough cookie, like me, she can do anything she puts her mind to, I'm sure. At the end of it all she will have all her physical beauty intact, and a new, inner strength that will only enhance that. Stay strong with her and for her. I was at the gym pretty regularly all during treatment and now back almost to my former weights. Feeling GREAT, life is good. Please, don't despair, treatments work!💗my best wishes to you and your wife.
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Heartbroken...so sorry you have to be here but welcome. I know you will find this forum both comforting and full of knowledge. To start, stay OFF google. Its not your friend. I agree with all of the above. I would like to add that IMO get your wife to a university based teaching hospital. Good luck and keep us posted. We are all here for you.
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WOW!!! Thank you so much for taking the time to reach out with advice and well wishes!!
I've never been a forum type person, but truly feel here is where my wife needs to be. I feel the love.
I let her read your thoughtful and kind replies.
She really does need yous guys...
So far, she has gotten her chest x-rays back, they said the x-rays looked good. Did blood work yesterday and also spoke to the plastic surgeon.
Getting ready to go to the doc to talk more test results and treatment. We both are dreading this trip.
Thanks so much everyone!!!
HeartbrokenHubby
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Surprisingly you will feel better when you speak to the doctor, we all know how terrifying this testing stage can be. We each have received so much support here, I know I’m greatful for it when I’m feeling down. Please know we are all here for you and your wife.
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Heartbroken, my prayers, positive thoughts and hugs for you and your wife. This is hard, but you will feel better once you know what you are dealing with and have a plan. I found the waiting to be the very worst part. You both will find strength you never knew you had. I found these boards while searching specific terms, but did not realize how helpful the sense of community would be until after my surgery. I have been blown away by the information and positive thoughts here, all amazingly given with respect for individual differences of background, diagnoses and ideas about treatment plans. So unlike other social media, and so refreshing. Please keep us posted on what you learn, if you wish, of course. We care
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Yesterday seemed like a long day...
We went to get her body fat analysis done, as she always has done, once a month for her training towards her body building competition. She lost a few pounds.
We were able to sneak in her EKG which results came back good.
Talked with her surgeon, she said that my wife is positive estrogen 15%, progesterone 70%(I think, in the 70's for sure), and we are waiting for her other tests. Doc says that we have to wait for the other tests now. She has a bone scan on Monday, and a CT scan with contrast on Thursday. So, bone scan, CT scan, and bloodwork are needed yet. They had her take a genetic blood test yesterday and we will wait two weeks for the results of that.
Doc said that, if the bone, blood, and CT all come back good, she sees this at a stage I. She said at the beginning of surgery, they will test her lymph nodes. If her lymph nodes are positive, that will raise her to a Stage II. I pray the results all come back good here on...
Today was the day she decided to tell some family about her condition. She called her dad, her mom, and brother. Watching the pain in her face as she told them absolutely crushed me. Her dad took the news the best. He said her grandmother had breast cancer and beat it. She is still alive and in her 90's now. We had no idea her grandmother ever had cancer. We have to update her med info with this. Didn't know.
So we wait. We have lots to do this weekend around the house. Hard to focus on things, and all we find we want to do is lay in bed and watch movies. I know this is OK to do, but we have been neglecting projects and chores to this point. I hope we both can find clarity enough to get all our things done and resume us time.
Thanks again everyone!!!
HeartbrokenHubby
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Hi again. I encourage you to do whatever makes you guys feel good. The chores can wait. As others have said this is the hardest part of the journey. Try not to come to any conclusions until you have all the information. Our imaginations are usually much worst than the reality. We are all here for you. Good luck and keep us posted.
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Really, don't Google. For information I got the Mayo Clinic book on breast cancer which gives a full view of the landscape but doesn't get bogged down in too much detail. I came to this forum in the beginning but even though I am a researcher by nature, didn't google much at all until I knew all the details of what I was dealing with.
Pathology after surgery gives you the most information. Does she have a HER2 result yet? (Mine changed from positive in biopsy to negative after surgery.)
She may have an Oncotype Dx or Mammaprint to help determine chemo or not.
Getting a second or third opinion is fine, if that is what it takes to feel reassured.
I couldn't understand the chirpy cheerful demeanor of my docs but understand now that they are dealing with stage 4's a lot of the time and I was relatively okay at that time. That said, I did find another doctor who understood my worries and did some more testing to answer a few uncertainties.
You are at the beginning. Netflix is your friend. Some of us got a little Ativan but it sounds like together, you guys are getting better in handling this
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Heartbroken, I thought telling my family was the hardest part. I felt like I was giving this disease to them too. My husband pointed out that this is just part of life, and part of what families do. There is strength in numbers, and having them on our side in prayer and uplifting thoughts meant the world to us. As for activities, sometimes being in your normal routine helps. Other times, watching movies together feels best. We enjoyed silly comedy so much. It is hard to laugh at first, but it feels good! Hugs to you both.
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Thanks for the replies!! It makes it all seem less intense hearing everyone's experiences. I mean it truly. Thank you. You don't have to respond and make us feel better, I know this, which makes your replies so much more special to me.
She/we seem better today. Just waiting to take some tests and waiting for results. I have been remodeling our house, and it was nice to not focus on what might be. I had my moments. I do not reccomed listening to Norah Jones radio on Pandora. Haha!! Norah has a special place in my mine and my beautiful wife's hearts, but the other songs Pandora teams her up with...not cool. Definitely pulls your heart to the floor.
My beautiful wife worked on our business stuff, distracting... yes, frustrating...most likely. But she says she has to get it all done.
Question for everyone... we were told that getting a lumpectomy, or a mastectomy does not change your chances of getting cancer again after treatment...is this true?? We were told, statistically, breast cancer has more of a chance to come back as a different form of cancer, like liver or bone, than it does coming back as breast cancer again. Is that true too??
I am seeing women get double mastectomies, so I have to wonder why. I know they have it done with the knowledge of the genetic mutation, but I don't understand. Is it more for piece of mind??
Thanks so very much everyone!!
HeartbrokenHubby
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I forgot to mention, she is now in this community. Zambonisgirl.
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Hello, my husband encouraged me to join this thread and since I saw you were also into fitness I thought I would reach out to you first. The weirdest thing about this whole diagnosis is that I feel fine. Great, in fact. The whole thing seems like a lie and it’s so weird. Did you have a similar experience?
Does everyone feel healthy until the chemo? I guess I always pictured cancer as making people feel sickly but now I’m freaking out a bit realizing it’s going to be the poisons they put in me that will tip me to the I’ll side
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Hello, my husband encouraged me to join this thread because he’s a sweet and loving Angel ❤️.
The weirdest thing about this whole diagnosis is that I feel fine. Great, in fact. The whole thing seems like a lie and it's so weird. Did you have a similar experience?
Does everyone feel healthy until the chemo? I guess I always pictured cancer as making people feel sickly but now I'm freaking out a bit realizing it's going to be the poisons they put in me that will tip me to the I'll side
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I can only speak for myself. Due to DX, lumpectomy on my right was not an option. Actually my BS did 173 mastectomies the previous calendar year so I trusted him. His words were lumpectomy is possible but won't be pretty. Left one was possible but went w both.
I agree lumpectomy vs mastectomy the dreaded recurrence is about the same because this BC thing is totally unpredictable.
However.again it is my personal feeling mastectomy has higher chance of clean margin which in plain English taking more of non cancerous breast tissue surrounding the bad sucker cells. Clean margin is the primary purpose of breast surgeries.
With that in mind, in terms of psychological impact I am sure lumpectomy vs MX are both up there. Probably mastectomy is a bit more hurtful. Please be gentle and be patient with your wife especially in terms of intimacy.
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I opted for a lumpectomy because my tumor was small and my BS said I had a wimpy cancer whatever that means. Plus the survival odds were the same lumpectomy vs MX. That’s hard to believe but apparently true. I did have s second surgery to even the margins. My BS was all about saving the breast.
My sister was also DX with BC a year after I was. I’m 7 years out last August. Her BC came back after 4 years near the MX scar. A rogue cell. At least it wasn’t metastatic. She is doing okay so far. She didn’t have chemo or radiation the first go around. This time she had radiation treatments.
There are no guarantees either way so just go with what you think is best and relying on advice from your doctors as well.
I did have the Oncotype test. My score was 11 so I dodged chemo and had 33 radiation treatments instead.
In the meantime stay busy so you don’t dwell too much on what it is now. Those upcoming tests will tell you a lot more.
Good luck. You can do this. We are all testaments to that!
Diane
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Breast cancer can come back in the breast or where the breast was. It can also come back in distant sites (metastasis). In that case - it is still "breast cancer" but in a different site. Cancer cells can travel through the blood or lymph systems in your body.
As far as mastectomy - some choose it for piece of mind (even though rates of recurrence are similar) and some chose it for aesthetics and some have no choice. I had a fairly aggressive cancer and didn't want to deal with watching things in the other breast and possibly needing more surgery to make the breasts symmetrical.
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Zambonisgirl I also felt great until I started all the necessary tests and procedures for this bc. I have had 2 weeks of intense testing like 4 full days packed with Dr appointments CT, bone density, biopsy’s, ecgs, port placement and whatever else they thought of. I am mentally and physically exhausted buthope to start back exercising again as soon as I feel up to it during chemo. I start my chemo Tuesday. Good luck with all your treatments and hopefully you will have few side effects
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Zambonisgirl, When I felt my lump ,in my armpit, not my breast, I knew it was something bad, but the funny thing was, I was feeling my absolute best, healthiest, strongest! You know when you're working out, and you're feeling so good and full of energy, that you can do anything. That's where I was when I got diagnosed, in 2015. My cancer was advanced, in the lymph nodes. I had been so sure that my healthy lifestyle exempted me from worrying about cancer. Everything I ever read about how to avoid cancer, I did! So WTF?! But here's the thing, your healthy diet, and strong body will help you go through the treatments more easily. I healed well from my surgeries, sailed through radiation. Chemo, was a challenge, you kinda feel like you have the flu for a week, each cycle, food tastes wrong, but I still was able to go to the gym, taking care to avoid germs, even when I felt weak, I still went through the motions to keep my "normal" self. You can do whatever you have to do, and then, when treatments are over, you really appreciate feeling good again! I'm back to my former workouts, almost to my heaviest, weight training, feel in GREAT 💗 You can do it! Any advice I can give you , feel free to private message me, Kelly
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I celebrated my bday the week before my annual mammogram, which found my cancer. I had just been thinking about how great I felt, how blessed to be healthy. Ha! I already had cancer, just didn’t know it. Totally agree that your good health is going to help you fight and beat this. It definitely gives you more options. On the issue of choosing mastectomy, although they found and biopsied DCIS, it was the fast growing, aggressive kind, and the MRI showed possible invasive cancer in the same breast and lymph node involvement. Also, mine is not ER/PR receptor positive, so the hormone therapies won’t work for me. I saw that as fewer weapons to fight with. My BS believed the MRI findings were just from the biopsy trauma. She still recommended mastectomy. So did my 2nd opinion BS. That was what I wanted to do anyway. I wanted to be as aggressive as I could be, and did not want to 2nd guess if there was a recurrence. I had a double because I never wanted to deal with this again, if at all possible. It turned out that my BS was correct, and there was no invasive cancer and no lymph node involvement. I know that does not mean the cancer won’t recur, but I also believe I have done everything I can do to keep that from happening. I know myself, and that was the best choice for me. The differences in diagnoses, age, overall health and ideas about risk make this such a personal decision. I wish you the best, and I hope you will keep us updated.
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Zambonisgirl- LX vs MX is a personal coice. I chose LX over MX due to faster healing, no drain tubes, and knew I could live with a "divet" on my left breast.
Surgery didn't get a clean edge, needed a reexcision (same spot, easier knock out meds, no intubation) and being small breasted surgeon said if she had to remove too much tissue she might have to do a MX. I told her I was ok with that, to use her judgement. Woke to LX and no drain. You and the surgeon you trust will let you know what can or can't be done. My tumer was small, at 12 o'clock, but she took tissue down to my pectoral muscle.
As they put me under for first surgery, my only question was when can I get back to the gym. You too will get through this. If you're a body builder you already possess determination and the discipline needed to get through this!
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Zambonisgirl - Calikelly is right - your excellent physical condition and (other than breast cancer) health will make a world of difference in how you handle/recover from treatment. Don't worry about chemo or other treatments until you have a plan in place. I exercised in one form or another through 2 years of treatment and surgery. And I'm 15+ years older than you. Each of us reacts differently to what we go through - for example, DIEP reconstruction was a walk in park for me vs my mastectomy; radiation was harder than chemo. Read enough in this site and you'll find differing opinions on everything. Advice - talk to your doctors, see more than one, make your decisions and move through it. It's no joy ride but you will get through it.
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