My friend Jenny, Breast Cancer Warrior

[MagnoliaforJenny]

Hi all!

I'm new to the boards so please excuse me if I'm in the wrong place. Also forgive me if I use wrong terminology, I'm still new to this!!

My best friend, Jenny, was first diagnosed with HER2 about 18 months ago. She had one node that was positive. She had chemo, radiation and then lumpectomy and removal of several nodes. She finished all of her treatment, including Herceptin three months ago. Her hair started growing back in, she was feeling better, things were looking up.

Until......about 4 weeks ago she noticed some discomfort around her surgical site. What was left of her breast was twisting and became disfigured. She was having pain in her arm and her chest area. The Doc kept telling her there was absolutely no way the cancer could be back so soon after treatment, it must be edema (?) etc. She kept calling until finally her oncologist saw her. Sure enough, the cancer was back. I'm starting to get teary now, so forgive me for rambling.

Not only had the cancer returned in the original area, it is in her muscles, her chest wall, her liver, and her lung. They immediately hospitalized her and did a massive chemo round. Now she's on herceptin/chemo alternating weekly I think. It's all such a blur to me right now.

I guess my biggest concern is that what does this mean for my dear friend? and her kids? Is it an ominous sign for her that it returned so quickly, even with all of the aggressive treatment she received?

I'm trying to reconcile all of this but my brain is just not processing it.

I saw her and her daughter yesterday, we have all been close for about 10 years.....anyway she has already lost all of her hair again. She's having issues with chemo skin as she calls it. I bought her some gentle skin care products in hopes it relieves her discomfort.

I really lost it after talking with her Mom, and hearing her cry just killed me.

Jenny is having a new port put in today, and her treatments will continue.

I just don't know what to think about all of this. I'm scared, confused, and my heart is breaking.

I hate to give up hope, and I know she is not....yet it cannot be good that this has returned so quickly.

She will have a PET scan after the next round of chemo/herceptin and the oncologist will have a better idea of what she's looking at.

Any advice, information, anything would be helpful at this time. I'm at a loss. I can't bear the thought of losing my best friend.

[jones7676]

Certainly, this is not good news for your friend. But do not give up hope. If you check the posts on this website you will see the stories/treatment histories of many amazing women that are fighting this disease. Try to stay positive.

[MagnoliaforJenny]

Thank you for your kind words. I have read some amazing stories of strength and courage and above all, hope.

I just spoke with Jenny's daughter earlier, Jenny had to have a new port put in today. She said she is sleeping now and that all went well.

I will keep reading, and above all keep positive!

[Mary Anne in TX]

I know that you are rattled and that you are so concerned about your good friend. Has she had a 2nd opinion? I'd do that for sure. It's hard to tell what she had as far as treatment, because I know it must surely be a blur for you. Gather as much info as possible and get back with the information. I'm praying for you all. Never give up hope. Take a deep breath and keep standing in faith and courage. ma

[KellyA]

First of all, let me say how lucky Jenny is to have such a wonderful friend. Your support through this will mean more than you'll ever know and can help keep her spirits high and give her a hand with the fight. I know that it must be very scary and shocking to see the cancer return so soon, however if you look at some of the signatures on this board, you will see many whose cancer came back very quickly and who have had great responses with chemo and are doing wonderfully now- years later. There are so many so medicines now to fight with, and many many more coming down the pipeline, especially for Her2 cancer.

You have definitely come to the right place by coming to this board. It has been a godscend to me and the women (and men) here are very supportive, share a wealth of knowledge, and are just fantastic people. Everyone is very happy to answer any questions you may have, or just to listen, and share your moments.

It will take some time to adjust to the shock, but then Jenny will see the light again, and will be up for a fight. Your friendship will give her much strength.

Love, Kelly

[Sheila]

Jenny's Friend
First of all, Jenny is very lucky to have you looking out for her....there are many of us on this board who recurred...I did 1 1/2 years later, and here I am, still in treatment 4 years since I recurred. There are so many new treatments and meds...Jenny is lucky that these will be available to her...they weren't just a few years ago...did they say where the recurrence is...lymph nodes, chest wall, skin? Alot of where the mets are will determine treatment and type. Be there and be supportive as you are...keep her spirits up and get her in the fighting mode...she needs you to strengthen her, and continue to be her strength....you are both in my prayers that she will conquer this setback in no time....

[MagnoliaforJenny]

You ladies are all amazing. I was scared a bit to start posting here as I am not the one with cancer, Jenny is. Thank you for allowing me into this particularly private area of your lives and for sharing your experiences.

First of all, I'd like to say that my best friend has NOT gone for second opinions. That in and of itself frightens me. She was told she was seeing the "best doc in town" and just went with it. I understand why she did this but now with the recurrence so soon, I really would like for her to go to the teaching hospital in Charleston. (MUSC)....I don't think she will though.

She also does not have internet access at home so I guess I want to fill in that gap for her and hopefully learn some things that I can pass along that will be helpful for her in this battle.

I don't think I've had anything rattle my insides quite as much as this. The only exception is when I lost my Mom suddenly in '97. Jenny is my touchstone, my rock, my strength....I'm tearing up now thinking about her. Her daughter and mine have been best friends for the past ten years and that just makes it doubly hard. We of course ask the question "why?" how could this happen etc.

I know she's had taxol/herceptin and some radiation treatment. Now with the recurrence a few weeks ago, she's doing chemo and herceptin right now (had to get the port today due to vein issues) and a PET scan is being done in a few weeks to see if the mets have spread, shrunk, etc.

I feel so much better and more hopeful now that I have read so many of you have gone on to lead healthy, happy lives.

I know I'm operating on a totally different plane somehow than one who is actually going through this. I think something just takes over and enables one to rise above the fear, the pain and the unknown to be able to fight. I see this in Jenny each time I see her or talk to her. It's amazing to see the strength and faith.

Thank you again for allowing me to be here. I feel like I've learned so much already.

[MagnoliaforJenny]

Her recurrence or "mets" I think you say? are on her liver, her lung, her chest wall and surrounding muscle tissues near the original site.

[tricia keegan]

I just wanted to tellyou as scared as you all must be, there are ladies here overcoming the odds so please hang in there,you're a great friend to Jenny and I hope she gets NED and see's this through...
My best wishes to you both..

[BonnieR]

Jenny is so lucky to have such a caring friend. It will mean the world to her to know you are there.

[gin-tx]

The most you can do for your friend and her family is to be there for her. Family and support from friends is what keeps all of us managing with new diagnoses, etc. I know it's soon after her first episode and hopefully they will be able to get her into remission again. My thoughts and prayers are with you and your friend. Let me know how things continue with her progress. By the way, I had BC in 1995 and it came back in 2006, much more aggressive this time, it's been 18 mo and I'm hanging in there, still doing treatment and taking one day at a time.

ginkott1@aol.com

[BonnieR]

Something else. Are you ever able to accompany Jenny to appointments? As a patient it is difficult to remember everything you are being told. Or to think of the right things to ask. And to write down the information
At any rate, you might get her to give you questions that she might have for us, since you are the one with internet access. But we are no substitute for her health care team which needs to get into full swing.

[MagnoliaforJenny]

I have not had the chance to go to any appointments, she has preferred to go alone. She has not even wanted her Mother with her. She's one strong willed woman! I will make sure that I offer that though next time we speak. This is all so taxing for her and I'm sure her Mom, I think it would be great to have someone else along just for a second ear.

She's a divorced Mom of two teens and very independent. I admire her strength and courage yet I know the first thing I would want is someone to be with me so I didn't miss something. They have labeled her "inoperable" and "chronic cancer"....I forgot to add that earlier I think. I'm not sure what all of that means, or if she really does either. It sounds ominous enough that I am sure she needs all the help she can get.

I promise to be cautious about offering any kind of medical anything, but I will pass on anything new I may learn so that she can ask her docs about it. ;)

I am feeling more hopeful than I have in weeks. I am so inspired by your stories. This is a whole new realm for me. This is not my Grandmother's breast cancer. Things have changed so much since then, though she did beat it and lived until the age of 77!

I am diligent about getting my mammograms, especially since I've had two scares myself. Once with calcifications another with a fluid filled cyst. The calcifications have remained the same for 3 years and I hope it stays that way.

[tousled1]

Magnolia,

One thing to be sure to mention to Jenny -- make sure that she asks her oncologist for either a MUGA scan or echocardiogram. This test should be repeated every three months for as long as she is on Herceptin. Herceptin can cause a person's LVEF (left ventricular ejection factor) to go down. If it drops to 50% or less then Herceptin is stopped until the LVEF comes back up. Jenny is very fortunate to have such a caring friend.

[Sherryg683]

I think I read that the most likely time to reoccur, if you're going to, is within 17 to 22 months after treatment. Someone please correct me if I am wrong. If this is correct than your friends reoccurance wasn't that far from the average. I don't know how her oncologist could be so surprised. It will be 2 years from my original diagnosis and lung mets, in december and I have been in remission or NED since April of 05, so it's been 18 months and counting for me. There are many treatments that could help your friend, with more on their way. It's scarry and very hard, let your friend know you love her and give her a shoulder to cry, complain or cuss on when needed. That was what I found I needed and still need the most. Most of the people around me didn't know what to say and really don't feel comfortable talking about the cancer, other than saying "how are you". That's why I come here, I have people to vent to who know what I'm going through. You are a good friend to care enough to come here..sherryg

[gin-tx]

Dear Bonnie,

What a good thought of taking someone with her to appts. I never go to my appts to see onc without having someone with me as everyone thinks of various things to ask. I don't know what the term 'chronic cancer' means but hope they can get her on the right course of treatment and make progress very quickly. People ask me all the time if I'm in remission, at this point I would say no as I'm still getting treatment. Continue to offer good suggestions and info. I'll keep you in my thoughts and prayers.

ginkott1@aol.com

[Verna]

I'm sorry to hear about your friend, and what she is going through. I was diag. with stage IV 2 years ago November. She needs to fight as hard as she can. She will get through this. She is lucky to have a good friend like you, she will need you. Stay positive and strong!

[MagnoliaforJenny]

I will be sure to ask if she is having her heart monitored. I didn't know that about herceptin, so thanks for the tip.

I think there is probably lots I don't know at this point. I appreciate all of your sharing.

I told Jenny in no uncertain terms, I'm the one in the trenches when she needs me. I'm not the shrinking violet type. I can handle the ugliness, in all of its forms, and I hope she will lean on me more. This has to be heart breaking for her Mother and I've told both of them, and the kids, please use me when needed. It's not good for them to have to take all of this on alone.

I'll probably give her a call tonight. She is meeting with HR at work today I think. She is wanting to retire with full benefits. She would cut her salary in half and would have to relocate....but I do think it would be good for her and her kids to do this.

Thanks again everyone.

[MagnoliaforJenny]

Thank you Verna :) It's stories like yours I love to hear!! You ladies are amazing.

[Margerie]

I am not impressed with the "best doc" in town. Your friend was complaining of symptoms 2 months after treatment and it took a month and some begging to be seen? I also find it hard to believe all of these mets popped up just recently. Don't get me wrong, I love my health professionals- but they are not immune to screwing up. IMO a second opinion is mandatory! Tell her I said so-LOL!

Anyway, I am a stubborn woman too and part of this disease is learning how to ask and accept help. I still give my hubby the evil eye if he shows up at my infusions! And it is a must to stick up for yourself (or your friend) when it comes to treatment!

I wish you both the best of luck and am so sorry your friend got this news. ((HUGS))

[MagnoliaforJenny]

I'm not impressed either, trust me. I'm VERY skeptical of the health care profession in general. I've had my share of health issues and I have yet to find a Doc here that I really trust. I've just recently dropped my gyn. simply because he's messed me up more times than I can count. I just don't trust many docs anymore. Yes, I'm skeptical, and if i get a cancer diagnosis this is the last place I'll seek treatment.

That being said, Jenny is not one to be skeptical. She was born and raised here, her family is here and it just would be out of the question for her to consider going somewhere else for another opinion. I will do my best to persuade her but I doubt it will do any good.

I think you have pointed out exactly what has been in the back of my mind, she's just not receiving the best treatment she could be.

Now she swears they scanned her, did all the bloodwork etc. before they took her off of treatment. Three months later she has the mets? I don't quite believe it either.

I also don't want to make things harder for her so I won't argue with her. I do hope she will be willing to listen though.

[Bev]

Hi Mag,

Going back to Sherry's post. ER/Pr negs tend to recur faster than ER/PR pos. I think if you could post her whole path report, you might get more insight.

For early stage BC, my 3 opinions were unanimous. With certain profiles it's clear what to do. With Stage 4, it might not be so clear. That's where posting her path comes in.

It's so nice of you to help. I think Jenny has lot's of drugs to try to make her well, not fun but do-able. Hang in there. BB

[MagnoliaforJenny]

Hi Bev

Her cancer is not hormonal driven, I think that's what you are asking anyway. I wish I had a path report, I'll try to get that.

I just want to make SURE she is getting all the best treatment she can get right now.

Everyone here is such an inspiration and proof that this thing can be controlled, and a good life can be lived :) Thanks again everyone.

[BonnieR]

Jenny's friend. Going somewhere else for a second opinion does not mean that she has to go there for treatment. Just to get another take on the situation. It is part of being informed and very commonly done and she owes it to herself.

[tousled1]

Magnolia,

I finished my original treatment (including Herceptin) April 20, 2007 and I was diagnosed with a single brain met and mets to the lungs in July 2007. So you see, I metastisized very quickly as well. I had very aggressive treatment and there was nothing more that I could have done to prevent the mets. Some of us will gets mets and others won't. Hang in there. You're doing a great job in being Jenny's advocate. She's fortunate to have such a good friend.

[Monica]

Hi Magnolia,
I'm wondering if Jenny is afraid that she will offend her doctor if she gets a second opinion. Maybe she doesn't want him to think that she doesn't trust him. I would suggest that Jenny asks her doctor his thoughts about getting another opinion. She could say, "I feel very fortunate in having you as my doctor. I have heard from a friend it's standard procedure to get a second opinion. What do you think?" Any good doctor will say she absolutely should.

Like many others have said, Jenny is lucky to have you as such a caring friend.

Best,
Monica

[MagnoliaforJenny]

I plan on talking with Jenny tonight and asking some questions that I'd not thought of asking, thanks to you guys :)

After I've thought about this for a bit, emotionally? I am a very good friend, to a few precious people in my life. I find myself wondering "who would be there for ME if something like this were to happen".....the answer is probably no one. My husband and my daughter, but really no one. I find that the vast majority of the population are so self centered they can't see past their own daily lives to be bothered with the "uglies" of someone else's life.

I know I've divulged that I've had MANY health problems, none of them as serious as cancer mind you, but many issues, many botched surgeries and mis-diagnosis. Once when I had severe internal bleeding from a surgery, Jenny was the one here, holding my hand, knowing how scared I was. The rest of my friends, family, acquaintances just run the other way when they just don't know what to do or say anymore. Anyway, I'll be there for her and just hope that one day if needed, someone will be here for me.

Now that I think about it, I have calcifications that have been biopsied and marked so each time I go in for a mammogram, I get a bit uneasy. I have a lymph node under that same arm pit that gets sore and swells at times. I worry, ask questions, get my mammograms, knowing that I have bc history in my family. I hope it doesn't happen to me, but it could. So, yeah, I'm a good friend but I'm not so sure it's all for selfless reasons. I get scared too.

I'll say it again, you ladies are amazing and so very inspirational. I really feel privileged to be allowed to peek into your private world. I pray for and think of you all, even if I don't post about it. ;)