Anyone else similiar to me?

JM · Guest

Hi, I was dx in Sept. with bilateral lobular carcinoma. I had double mast. Oct 20th, right breast tumor was 9 cm and 16/16 nodes positive, left breast tumor was 12cm and 18/23 nodes positive. Based on that I am stage 3C pending outcome of PET scans done Friday, which may move me into stage 4. I just turned 45 a few weeks ago. I had hysterectomy in 1998 for cysts and endometriosis. still have one ovary, but not sure if I am pre or post menopausal since haven't had period since hysterectomy.

Are there other bilateral lobular carcinoma women out there who have had extensive nodal involvement at diagnosis? My oncologist said that I have a 50% chance of being alive in 2 years, I'm scared. I'm having a port put in on Wednesday, they will put an IV in my hand even though I had nodes removed from both sides, they don't want to use feet or jugular. Then I'll start my first round of chemo on Monday, and have treatments every other week.

ShelleyC · Guest

Hi, I have been going through what you are now facing, just a little earlier than you since my treatment ended in September and I've been on tamoxifin since then. I had tumors in both sides and also had many affected nodes. I've had IVs in my hands 3 or 4 times (port insertion, CT scan and first chemo) since, plus lots of blood work. All very scary but if you take it a day at a time, you will get through it! Don't listen to any crap about survival rates since we can't do anything about that anyway. Just keep fighting and stay strong, best way to a great outcome.

JM · Guest

I'm glad you took the time to share your story with me. I was on another support board recently but I didn't find it too supportive, it's hard to gain support when you're the new kid on the block and the one who has the worst initial diagnosis. It's very scary. I know I'm not so unusual with my diagnosis, but I hadn't found anyone yet who was similar to me with both breasts and extensive nodes. Thanks again for your response. I appreciate it.Jan

ShelleyC · Guest

If I can be of any help, or just a good sounding board, feel free to contact me at Shelley.Coyle@cendant.com, we can share "been there and done that" stories!

Linda · Guest

Hi,
I can't relate to to your specific experience, but I just wanted to send good wishes! It is important for you to know that the medications that are avialble today can do great things as it relates to stomping out those cancer cells!

I agree with the previoius post that you can't get sucked into the statistics game. People seem to need numbers, so that is why they are there. Each of us are so unique metabolically that it is really almost impossible to pigeon hole us into groups.

Stay strong!
Sending positive thoughts,
Linda

BFagan2067 · Experienced user Joined: 07 Oct 2004 Posts: 54

JM, I was not diagnosed under your circumstances... but I do want to say to you and other women on this forum that are newly diagnosed a few things that I have learned and seen over the past 5 years that I have been around different boards and different men and women who have traveled this road along my side... statistics are just numbers on papers or that come out of peoples mouths.. you are not a statistic! If we look at statistics we can look at them in one of two ways, is the glass half empty or is it half full? If we must look at statistics as the answer then who is to say you do not fall into the 50% of people who are surviving and thriving? How recent are those statistics? In the 6 years since my initial diagnosis there have been so many new treatment protocols and advancements made in regards to the treatment of this disease. Many in the medical profession now view this as a chronic disease as opposed to a terminal one even at stage IV. I know that when I was first diagnosed I was a statistics seeker and spent alot of time comparing my cancer with other's. I do admit that there are times like right now when I do have a few of my friend who were diagnosed at stages earlier then mine that are experiencing mets, that the paranoia sets in... but I have to keep reminding myself that that is their cancer not mine... we are all different in so many ways.. and our body's react to the treatments etc. differently. I was told by my surgeon to not be that upset as that I had a good chance of surviving for at least 5 years.. my oncologist told me that I should ignore that comment. There are no guarentees either way in life or in this battle but do not let anyone, including your doctors take away your hope, your dreams or sanity by believing you are a statistic. I was diagnosed 6 years ago this month at stage III and evidently I have proved my surgeons statistics to be wrong...so far... I have had many friends who have also outlived their statistics as are surviving as well... OK, stepping down off my pedestal now Smile

... just wanted to let you know that your treatments and everything that you will experience in the future, though not easy is doable. Always have your hope and always plan for your future... needless to say there is always room for miracles in our lives as well... what can I say I am a BC survivor and a life long Red Sox fan as well Smile

Hang in there!
HUGS!
Barbara

MuttsMom · Guest

I have to agree with what everyone else is saying. When I was dx Stage II, Invasive Lobular BC with a 5.5 cm tumor and 9+/16 nodes, I was given a 50/50 chance of being alive without a reoccurence in 5 years. My onco doesn't like using stats because they are just that stats. That doesn't take into consideration, age (I was 43 and dx 2/14/02), er/pr status, Her2Neu stats and they also include those who chose no chemo/rads and go the "natural" route which to me is crazy. Suppliments are good, if they don't interfer with conventional treatment with chemo which has proven time and time again to work. Look at Suzanne Sommers who ticks me off beyond words. She decided against chemo because it was "Poison" but instead is taking extract from mistletoe. What do they tell us if we have mistletoe in our trees? Cut it down, it's poison and will kill the tree.
Lobular is prone to mirror itself in the other breast, which is just what yours did. I had a simple mastectomy on the other breast so mine couldn't do that. I was fortunate in that regard, but my mammogram missed a 5.5 cm tumor. It's been almost 3 years and I'm doing great. My onco doesn't do scans regularily, but if I have a problem he does. Ends up I had another bone scan, chest x-ray and ultra sound of my upper right quad (liver, pancreas etc) and of course all the lab work. My pain was from Arimidex and osteop (he did a bone density test too). So, he is as sure as can possibly be that I'm NED (No Evidence of Disease). TRY not to listen to stats because we are all indivduals. I like Barbara and many others, get really scared at time when he hear about others that have mets. BUT, look at me and Barbara being Stage III and so far so good. I've seen ladies with tiny tumors and no nodes have reoccurences. Get mad as hell at this disease and get your battle armour on and go kick some cancer butt.
Hugs and prayers
Nancy

NancyP · New User Joined: 22 Nov 2004 Posts: 1

JM -- your situation is similar to mine, but not exact. My tumor was in my left breast, ended up to be about 7cm in size, and I had 20 out of 22 positive nodes. I also had numerous kinds of cancer -- predominently invasive lobular, but also DCIS, invasive ductal, and Paget's disease. My tumor(s) were categorized as being very aggressive. Good news is that I wasn't HER/2 positive and I was ER/PR positive. Because lobular has a high rate of recurrence in the other breast, I chose to have my right breast also removed. I was 44 yrs old at the time of my diagnosis.

We are also similar in what the doctor told me were my chances of survival. She told me that I have a 20% chance of living 2 years. After I spent a year doing treatments, I found out that she meant 2 years from diagnosis and not end of treatment, which ticked me off greatly. I think I have a good idea of what you are going through and how scary it is to hear those words.

However, after surgery, 6 months of chemo, then radiation and Tamoxifen, I have been cancer-free for almost 4 years and plan to go on for many, many more. I beat their odds and I'm proud of that. And as I said, will continue to. The goal as I see it is to stay alive long enough to see the cure for this!

The good news with taking Tamoxifen is that it works great for 5 years and then you go on to Femara for another five. Those two combinations have had great success. My doctor defines post-menopausal as being without a period for 1 year. I'm not sure how that would relate to having had a hysterectomy, but I was pre-menopausal prior to chemo, have both of my ovaries, and chemo put me into menopause. She considers me to be post-menopausal. So even though you have one ovary doesn't necessarily mean that it is producing estrogen, but they should be able to do a test to find that out.

Hang in there! I won't tell you to not think about those stats because I know that you will -- and will always, although it does lessen with time. Please let me know if there is anything that I can do to help you.
Nancy

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