Desperately Need Some Advice

Kaliaja

Hi – I’m new to this board and I may not be in the right place but I really need help and I’m hoping you can point me in the right direction.  My mom’s been diagnosed with IDC. She’s in such a state of shock and denial that she’s not processing.  I have been trying to come up to speed but there is so just so much out there and, though I’ve spent dozens of hours researching,  I am feeling overwhelmed and horrified that I don’t know enough – may never know enough – to guide my mother (74 years old) to the right decision.   That’s why I’m here.

Long story short, bizarre as this sounds, after recovering from a fall in which she broke her hip and had a severely inflamed/bruised shoulder, when the inflammation went down over the course of several weeks, in its place was a huge mass that did not go away. Although my mother swears this thing was not there before the fall, it seems impossible to me that something that big could have formed in the course of less than 2 months. The mass was diagnosed as IDC and the tumor is “the size of an apple.”  T4.  Locally advanced with lymph node involvement in the right breast.  She is HER positive, ER positive, PR negative.  They are putting it at stage IIIC.

She only has one kidney and she has had bladder cancer in the past but it has been contained and treated.  However her PET/CT showed a mass of suspicious tissue in the renal pelvis which must be investigated before they will start her on treatment.   She has a ureteral stent which must be replaced so she’ll have that done next week and while they’re doing that they’ll examine the problematic area in the bladder. 

Assuming everything’s okay with the bladder (or can be made so), the medical oncologist is pushing her hard for chemo to shrink the tumor.  He’s proposing Herceptin given concurrently with either Taxotere and Carboplatin or Adriamycin and Cytoxan.  Second option is Herceptin with a single chemo agent.  Third is to go Herceptin and the hormonal therapy (some combination of Arimidex, Aromasin, and/or Femara.

The idea would be shrink the tumor, do a mastectomy and then radiation, chemo and the AI’s.  He’s really pushing for the chemo but my mom doesn’t want chemo and, while I might be able to persuade her, I’ve read in a couple of places that chemo is often too harsh for older women and that the AI’s work just as well.

 I really feel out of my depth here – I’m so scared of leading someone I love so much down the wrong path -- and you guys really seem to have a wealth of knowledge (not to mention determination and compassion) so I’d be grateful for any advice you can offer.  

Emily2008

Oh, I'm so sorry for what you and your mom are going through right now.  You are both, by far, in the worst part of it.  The "trying to learn all I can and make some decisions for treatment" phase is so very difficult and completely overwhelming.

I don't have any first-hand advice to give you, except to ask if your onc. has been able to explain why he's pushing for the chemo.  Chemo can be very rough, but there were plenty of older people in that infusion room with me each time, so keep that in mind.  Side effects can be managed well, though there are always long-term risks.

I would also encourage you to post under the following boards:  Stage III, Her2neu Positive, and Older Women WIth Breast Cancer.  YOu may find someone of help there.  These boards are a wealth of information, though sometimes on the weekend they're a bit slower.

All my best to you as you seek to help your mom.  She's blessed to have a daughter like you!

idaho

Sounds like you are on top of things more than you think you are.  You are learning all you can and that is the important thing.  Chemo is rough, talk to her onc about AL's and listen to your mom also.  You are in a hard place, but it will work out.   Peace to you, Tami

Vavoom10

Kaliaja:

I bought myself a book called "Breast Cancer, Real Questions, Real Answers" by Dr. David Chan.  It helped me understand so much and I learned a lot from it.  I'm not saying that this is the only book out there, just that it was one I happened to find while I was at the pharmacy getting my scripts filled, and I am so very glad I bought it. 

That is a pretty big tumor your mother has.  In this book, Dr. Chan explains that HER2 activity stimulates breast cancer growth and spread and Herceptin is an antibody designed to target HER2 and shut it down.

If your mother is in pretty good overall health otherwise, according to Dr. Chan, she should be able to tolerate chemo.  Dr. Chan also includes real stories in his book of the people he has treated, women of all ages and types of breast cancer, as well as the type of treatment he prescribed for them and their outcome.

Believe me, I know it is a shock to find yourself in this situation.  I am still digesting.  I'm 53 and was diagnosed with Intraductal papillary DCIS with some microinvasive IDC last October.  I underwent a right mastectomy with axillary disection, which showed 2 nodes involved, and because of the node involvement I underwent more node removal from under my arm, which all came back clean.  The grade of my cancer is a 3, which means it is an aggressive type.  I scored a 9 on the histological grading system, which is the highest grade you can get.  I am ER postive, which means my cancer is fueled by estrogen.  My Oncologist said he could not even tell me what stage I was in because of the crazy way my type of cancer was acting.  I was in quite a turmoil, so I understand completely.

The question is, does your mom choose life?  If so, then you do whatever it takes to stay alive.  I think the best thing to do is to listen to her Oncologist's recommendations.  I dreaded totally doing chemo.  I was never one to take this pill or that pill for this ill or that ill.  Putting those toxins in my body just filled me such dread, but I did it and I made it through.  I had my last Taxol on May 5, 2009.  I had four treatments of A/C and four of Taxol.  Now I am on Arimadex for five years.  I won't lie, it takes a toll on you, and it affects everyone differently.  The AC was less harder on me than the Taxol.  Then there is the Neulasta shot to keep your white blood count up as chemo will deplete those cells.  That was no picknick. 

Stay in touch with this website, the people here have so much to share about their experiences and you will learn a lot.  You also get a lot of encouragement here too and that is so so helpful.

I wish you and your mother the best of luck.  She will need someone to be with her all the time through this...is your Dad still here?  If you have siblings you all need to take turns to be with her.  She can't be alone to deal with the side effects at that age, and she will need someone to be with her each time she has a treatment.

Good luck and best wishes!

Carolyn

Kaliaja

Thank you all so much for responding to my post, it makes me feel so much less alone.

Emily -- he is pushing for chemo to bring the size down so it's operable -- he says you want to hit hard when you have the window of opportunity. I'm guessing AIs don't do as good a job at shrinking it.  Also I read elsewhere that chemo works best when cell's are rapidly dividing and that AIs slow cell division.  I'm assuming that if they're planning to use chemo post-surgery, then they don't want the cell division to have been slowed?  Anyway, thank you for the suggestions on the other threads, I will definitely look there.

Tami, thank you for the good thoughts...

 Vavoom, I will get that book.  I read/scanned Susan Love's book to educate myself somewhat but it has its limitations.  That is a tough road you had to travel but reinforcing to know that was do-able.  To your questions, as much as it hurts me to say it, my mom is so depressed over this that I can't honestly say she chooses life, she chooses denial (no chemo, no mastectomy) but I am hoping to be able to pull her along.  Ultimately, it is her choice but I have to make sure (for my own sake) that it is an informed one (not the result of emotional overload).  My dad is still around but, without going into a long story, she has shut him out.  So he will help with things later but right now it's just me.

Anyway, thank you all again.  You really are an inspiration and I will keep you in my prayers.  And I'm sure I'll be posting again... 

nelia48

My tumor had taken over the whole breast and I had lymph node involvement, too.  I'm 61, had the chemo first to shrink the tumor, then surgery, then radiation.  It was hard, but doable.  With something that advanced, I would have to say that just the AI's wouldn't be enough.  I had not had previous cancer history nor any other cancer showing up on scans, etc.  But my oncologist was very straight forward and honest and told me I wouldn't make it without the chemo, surgery, radiation treatment schedule.  I didn't ask for any other options, and went ahead with what was suggested to me.  I knew I was in trouble and didn't want to be sorry later. 

I know it's hard, especially if your Mom doesn't want to listen or is in denial.  Just don't yell at her, but keep pounding away at what is!  Bring her back to reality, and that the doctors do know what they are doing. 

My tumor shrunk to almost nothing by the time I was through with chemo, making the surgery much easier and more promising!  There is always hope!

Kaliaja

Nella, thank you so much for your post -- it sounds like a very similar situation.  I am so glad to hear that you are doing well -- you sound like a very strong and determined person...

 Would you mind telling me what your chemo regime was?  

bluedasher

Kaliaja, Chemo first to shrink the cancer is the standard path for stage III. I think Taxotere, Carboplatin and Herceptin or perhpas Taxotere and Herceptin would be preferable to something with Adriamycin and Herceptin because both Herceptin and Adriamycin can decrease heart function so they usually aren't used together. Given your mom's age, I would think using Adriamycin would be more of a concern. The heart function tends to recover after Herceptin is stopped. There have been stage III women on the taxotere, carboplatin and herceptin thread and the chemo shrunk there tumors sometimes to the point where there was no cancer left when surgery was done. I don't know how having one kidney effects the chemo choice. Chemo can be hard on the kidneys so that might be a reason to use Herceptin plus just one chemo drug. Herceptin is most effective when given with some type of chemo so they usually don't want to do it alone.

Cancers often grow slowly, but sometimes they grow quickly so possibly it wasn't large enough to be noticed before her fall. 

I'm sorry that you and your mom have to go down this road. She is lucky to have your help.

Kaliaja

Bluedasher -- thanks so much for the info.  Two people on the Stage III board suggested that I check into TCH (Taxotere, Cisplatin and Herceptin) to minimize the cardiac aspect.   Even though my mom has no cardio history and the echocardiogram is fine, she has high cholesterol so I think it's probably a good idea to avoid the Adriamycin if all things are equal (unless one is more toxic to the kidneys than the other).  I will certainly ask about that.  Again, thank you the advice and I wish you all the best....

bluedasher

TCH usually uses Carboplatin, not Cisplatin. That is what was used in the BCIRG 006 study. Cisplatin is a similar class of drug (both are alkylating agents and are metal salts), but I think it would be good to stick with the combination that was studied unless there is a specific reason to use an alternative. Cytoxan, another alkylating agent is sometimes used in place of the Carboplatin. The C given with Adriamycin is usually Cytoxan.

Alkylating agents are most effective against cells that are in their resting phase. Taxotere is a plant alkaloid which is most effective when the cell is dividing. So giving them together is a double attack getting both the cells that are dividing and those that are resting.

I hope that all goes as easily as possible for you and your mom.

nelia48

Kaliaja, I had taxotere and cytoxin.  6 treatments, three weeks apart.  I did lose my hair, but it started coming back soon after the last treatment.  I felt like crap throughout it, but mananged ok.  I did drive myself to the treatments, did my grocery shopping, and took care of my home ok --- like doing laundry, vacuuming, etc.  You don't feel like it, but it's doable.   A few days of each treatment I stayed in bed most of the time or in the recliner.  The rest of the time was moping around.

I hope your Mom has dealt with this by now and is come to her senses about treatment!  It's not all doomsday!!!!

Kaliaja

Bluedasher and Nelia, Thank you once again for the information.  I just found out that they want to start my mom on Herceptin tomorrow.  Then they wait for the results of the bladder procedure on Friday.  If what they saw in the PET turns out to be cancerous, that changes the options since they will need to use a chemo agent that treats both.  Either way, I think the "preview" with Herceptin tomorrow will also narrow the options...Ugh....thanks again....

Hoolianama0508

It is indeed hard to absorb everything you hear after the diagnosis. It is such a shock and your normal life is burst. However, there are many stages of this journey that your mom may go through. In my experience, I went from shock, to being obsessed with information and then finally to not wanting to let this take over my every waking moment. These are all natural responses to a stressful time.

Ask your mom what she wants. What is her medical goal for herself. The chemo shrinking the tumor also helps with surgery being easier. The larger the tumor the longer the surgery will take and then it will be harder on the body. That was how it was explained to me recently.

I pray that your mom will be able to make the best decision for herself.

JeninMichigan

I am so sorry for your mom's diagnosis.    My oncologist told me that actually her experierence has shown the younger women have a more difficult time managing the side effects of chemo.   I am Her+ and had a 2.1 cm tumor with 4 of 9 lymph nodes and liver and bone mets.   I did 6 cycles every 3 week of Taxotere, Carboplatin and Herceptin plus Zometa starting May 1, 2008    I got my chemo on Thrusdays and was always able to drive myself home.  In fact, I would mow the grass usually on Thursdays when I got home.  I went to work most Fridays.   Worst day was Sunday and then I was back at work on Monday.  By Friday the next week, I was back to feeling good again.    I did lose my hair but it was already coming back in by the last treatment.  After 3 cycles they did a PET scan and I was cancer free.  I have been on Herceptin ever since and am still cancer free.  

At 74 years olds, your mom still has lots of life left to live.    Chemo sucks but it is a small chunck of time of her life.  The great thing about HER2+ is that Herceptin is an awesome drug and given with TCH it will really work.   I am a single mom with 2 kids, 10 acres, horses, cats, a huge dog, rabbits and chickens.   My ex is a POS and is never around.  I did this chemo and kept up with everything!!   It is hard but very doable.    

 Hope you can give your mom lots of this info to read and help her decide.    I would be very happy to talk to her if she wants to know more about my experience with TCH. 

Jennifer 

lindatwo

Kaliaja,

I too have one kidney, and had been seeing a specialist for some ureter problems right before I was diagnosed with IDC in December.  I just finished four treatments of Taxotere & Cytoxin three weeks apart. My oncologist had me go in for blood work in between each treatment to check kidney function.  They also did a 24 hour urine test (I had to collect my urine in a jug for 24 hrs.) before they would start treatment. Anyway, as far as the kidney goes, there were no problems. We put any urinary tract procedures on hold  until we had the breast cancer treated.  I wish you and your mom the best!

Linda