Stage IV ILC

[KathyMW]

Was just diagnosed with ILC, lymph node involvement, scan shows distant mets.  It is HER+ but hormone negative.  Staging took weeks.  Surgery has been ruled out.  What is my likely life span?  

[ncmichigan]

Just adding my good wishes to Japdip's, Kathy. I used to tell my kids when they felt like giving up on something that you only fail if you fail to try. Hang in there and use all the strength you have to fight. Get all the support you can and use it whatever way you can to help you fight this. I'm glad that you still love your cancer center---that's really important right now. I hope they'll be able to get you through this in the best way possible considering the circumstances. You will be in our thoughts and we're here for you.
Hugs,
nc  

[japdip]

Hey, that's great news about the reversal in staging. I'm sure that you are exhausted but I'm sure you will be given the strength to fight this battle. I don't think I would even consider wanting to know the odds; I believe that NO ONE knows that type of thing and knowing isn't going to help you in your battle. Just step ahead and face it head-on and don't give up !! We are all concerned and praying for you and will be here to help, listen or whatever at any time. Kindest regards ....

[KathyMW]

Had thoracic surgery last week.  They removed 8 lymph nodes.  They now say I am not 4th stage, after all.  With all the staging, my tumor is even bigger.  It is much bigger than the 8 cm we began with at my first scan months ago.  So, the oncologist says we can go for a cure now but I have spread to lymph and the size of the tumor means it will be a battle.  I begin Adriamycin with Cyclophosphamide on the 19th.  They just biopsied my other breast and I will get results soon.  The staging and having the cancer grow has left me exhausted already.  I will have a year of chemo, plus radical surgery and 2 mos. of daily radiation.  Will it be worth it?  I haven't asked for my odds.  I am just happy it's not 4th stage.  I still love the cancer center.  

[ncmichigan]

I just reread my post and I'm sure you understood I meant "sorry" not "sore".  I'm also sorry your daughter is having such a hard time, but
with losing her Dad to cancer, it's certainly understandable. As japdip said, with time and support, hopefully she'll reach acceptance and you'll be able to help each other through this. The loss of your husband had to have been hard on you, too, and you have my sympathy. You've got a lot to be hndling right now and it's so good that your current cancer center is caring and compassionate. It can certainly make  difference in your quality of life during a tough time. My thought are with you and your daughter. Please stay strong and positive and know we're here whenever.
Hugs,
nc

[KathyMW]

My husband had an incurable cancer so I understand clinical trials. Trials, for the sake of helping others and getting good care, has always appealed to me.  My husband was never able to participate but I always thought I might.  I love science and my curiosity keeps me going.  

[SueYoung55]

Hi Kathy, I'm sorry to hear your diagnosis. I also had invasive lobular carcinoma and also couldn't understand a cancer that you couldn't see or feel. Mine was also the whole breast and into my lymph nodes but no distant mets were found.

Ask your cancer center if there are any trials going on for advanced stage HER2+ cancer and discuss with them any benefits of getting involved. And don't stop asking question, you are your own best advocate.

I'm saying prayers for you and your daughter. God bless you both.

[japdip]

I'm very glad to hear that you have found a Cancer Center that seems to be the compassionate type and that you are feeling comfortable with considering your situation. Unfortunately the medical communities do fail to offer what we need at these trying times. It shouldn't be that way but I suppose it is what it is and it's up to us to make the best of it. As if you don't have anything else to do, you might try calling the Amer. Cancer Society and see if they have anyone from their "Reach to Recovery" program that you might be put in touch with. These volunteers are women who are available to talk with cancer patients about whatever they need. Many Hospitals have their own programs that offer support gatherings for patients. Perhaps this would be a good activity for your Daughter to investigate ... don't give up on her; we never want to think of our parents as anything but "strong" and the person who takes care of "us" but we often do get over the shock and are able to assume the caring and nurturing roll. I truly believe that each and every one of us is much stronger than we could ever imagine. Here's hoping you do find the support you need and deserve and don't forget that We Are Here to do what we can. Blessings .....

[KathyMW]

My local cancer center is very inadequate.  I went that route with my late husband.  It was a horrible experience.  I didn't care for Ann Arbor, despite the fact that everyone else has praised them.  I have found a wonderful place in Grand Rapids, the Lacks Cancer Center out of Mercy Hospital.  Just being treated with respect means the world to me after my husbands' very poor treatment that left me wounded and afraid.  I have found that their caring has taken away much of my fear and anxiety over this disease.  Having ILC causes a lot of professionals to stumble.  They don't understand the invisibility of this disease and offered me a lot of false negative test results and encouragement that was only suitable for cancers that show up on scans and I even got a false negative biopsy, though my whole breast was involved by then.  I had to fight for this diagnosis over months but the care I am receiving now, if it stays this compassionate will help so much.  Trying to find a support system but may have to depend on the social worker at the hospital as my daughter is in agony over this.  I am trying to find the support for us.  Thank you so much.  

[KathyMW]

Mets to the lymph nodes that effect my lungs and throat.  That is valuable information for me about the bone mets as I haven't had that scan yet and would have freaked out if I didn't know they might be managed.  Very comforting answer for me.  

[ncmichigan]

I'm also very sore to hear about your diagnosis. We're "neighbors" as I'm in the Ann Arbor area. I can empathize with you also because we're very close in age---I'm 65. I can't add a lot to what japdip has advised you, but just wanted to add my good wishes for you on your journey through treatment.
I also wanted to agree with japdip regarding staying positive. I truly believe that it can make a difference in the outcome of a serious medical situation. I'm a retired nurse and there were times that a patient was given a very poor prognosis but they pulled through. I think their strength, will and positive attitude got them through. Medical care should address the psychological and spritual as well as the physical and I hope your oncology team addresses all three. I hope you have confidence in them and feel that they're doing the best for you---it  really is important. I'm not sure what facilities are available in Battle Creek but if you feel it's not adequate, please look outside the area for your treatment. A good support system also helps, so getting involved with a support group might be something to consider. Also, if you have family and frends who are supportive and offer to help you out during treatment, please let them.
There are people here who can offer support and advice, so any time you wish to come back with questions or just to vent, please do---we do care. Just add your notes to this same thread so everyone has the same information and can follow your specific issues. Take each step one at a time and try not to stress over the "what ifs"---just deal the best you can with "what is". None of us knows how much time we have, so live each day
to the fullest, as japdip said.  I'm sending you a big hug (   ) and warmest wishes.
nc

[japdip]

So sorry to hear of your diagnosis. The question you ask is almost impossible to answer. This would depend upon the areas of mets. and what treatment you are given at this point AND the response to the treatment. Hormone negative cancers are considered more aggressive than those dependent on Hormones for growth. Mets. to bone is much more manageable and gives one a longer life expectancy. Unfortunately it may well be a "wait and see" situation. Just work closely with your Oncology team and keep a positive attitude as well as maintaining a healthy lifestyle. Whatever your remaining time may be .... make it count to the fullest !!  Kindest regards .....