Dis Breast Cancer Survivors Part II -GAGWTA!

[lookingforward]

Hello ladies, my name is Melanie. My DH is Randy. He recently posted. I would like to join in and add my thoughts, if you don't mind.

Dawn,
I had a MRI of the breast to tell if the lymph nodes were invoved, to look at the other breast and to confirm the size of the tumor. I also had CT scans (now they do PET scans) looking for anything else in the body. My Breast Surgeon (all she does) then sent me to talk with the Medical oncologist and a plastic surgeon if I wanted a mastectomy and reconstruction.

If they are concerned about the lymph nodes they can perform a fine needle biospy in the office with local and tell if there are any cancer cells before surgery. Ann is correct about lymph nodes and the need for chemo. Radiation is generally reserved for large cancers that are too close to the chest wall or already invaded the chest wall. The MRI and PET scans can answer most of the question.A lumpectomy with radiation has the same "cure rate" or is equal to a mastectomy. Chemo is only needed if the cancer if in the lymph nodes.

I will pray for you and for wisdom for you doctors and your treatment.
Melanie

Actually, chemo is often ordered for women with negative nodes. It depends on the size of the tumor, aggressiveness,e tc. 15% of negative node patients have recurrance so often they are offered chemo as part of the prevention.

I had a mastectomy and am having radiation AND I have an expander for implant. I am choosing to have radiation because recent studies have shown that it increases survival and prevents local recurrance. Radiation is recommended for women with more than four positive nodes (although that was not my case). I am chosing to do so since I had extra nodal extension in the one sentinal node which does not affect my chancces for recurrance at distant sites (matastis) but does increase my chances for a second cancer in the skin, etc.

There are at least five women in my support group who had reconstruction with implants AND radiation and did fine. A few had to have some extra procedures to fix some scarring, but overall they look fabulous (we show each other the final results). My plastic surgeon is not going to give my my implant until I am three to six months past my radiation treatment which follows my chemo. I chose to have a very aggressive treatment protocol..

OH! I forgot...FYI..my breast MRI and PET scan showed no signs of lymph node involvement ....and then my sentinal node biopsy (done during my breast surgery) came back positive. It was quite an unpleasant surprise, but thankfully was only one node and a microscopic amount in the second, so 2 out of 20 nodes.

 

[lookingforward]

Hi everyone and Welcome SHAYMARAYSMOM and Melanie,

I finally had my last chemo today ! Woo Hoo!!
Can't wait to get thru the next couple of weeks to start feeling a little better, I know I will still have some fatique but at least no more chemo.
I will still be going for Herceptin every week right now then it will change to every 3 weeks. Radiation will start in about a month, but I can handle all of that.
Hoping to celebrate as soon as I am feeling up to it.

Violet

YAHOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I have 47 more days until I can post the same thing. I am so happy for you. I heard radiation is a breeze after chemo. And you CAN handle it, you are strong!

 

[DeeCeeSW]

And now it's time for...the Breast MRI that never happened!

Arrived at RWJ one half hour early as asked. Registered, was given forms to fill out and then told to sit down. 45 minutes pass (15 mins. past my appt. time) and I mention to my DGF (who accompanied me due to the Ativan) that they must be running late. 15 more minutes pass, so DGF goes up to the desk to inquire about the delay. "Oh, we are running late," one woman says. Then the woman next to her says "What time was your friend's appt.?" 2:15, my DGF says. "OH, she's going to be here a LONG time," says the second woman, "that woman who went in just after you got here had an 11AM. APPOINTMENT AND JUST WENT IN, and that woman waiting over there had a 1PM. APPOINTMENT (it's now 3pm.)." And so you may not get in until 4:30, maybe 5:30." "We had an emergency earlier and so we are all backed up."

Excuse me, what?????? If the woman with the 11am. appt. was finally seen at 1:45-2:00pm., that means that the MRI clinic knew about the delay hours before I left my house--WHY WASN'T I CALLED? I arranged for a ride bc of the drugs, for childcare for my child and DGF's children, took drugs one hour before the procedure, and now no MRI? WHAT?!

Ok, I tell them, I've got to go. 5:30 doesn't work for me. We planned this a week early. All I can say is it's a GREAT thing that I had taken tha Ativan or I would have FLIPPED MY WIG.

I have to tell you that so far, I am not impressed with the way this hospital is functioning. There is a definite communication problem here, and not just in the radiology dept.

I ask for my films bc I now plan on going somewhere else to get the MRI done. Radiologist and his assistant apologize PROFUSELY, please come back they say, we will fit you in ASAP, we will come in earlier for you, anything. They even validated my parking, LOL. Next time you come in, pls register then bypass office, and come DIRECTLY to MRI he says, and I will PERSONALLY put you on the table. Long story short, new appt. is for NEXT Thursday at 8am.

So now I am a week behind. Very frustrating. Tomorrow I call my local radiology group (as I probably should have done to begin with) and see if they can fit me in before Thursday. I doubt they will be able to.

I wanted to explode over this today, but thankfully didn't. I think the Ativan helped, LOL. This was COMPLETELY unacceptable.

I know this kind of stuff happens everywhere but I am seriously considering changing hospitals. I mean, we haven't even started with the rough stuff yet....

I like the surgeon but the support staff has been less than supportive so far.

Ugh.

Dawn

 

[TulsaDisneyFamily]

Violet,
Congratulations!!!!!!!!!!!!! My radiation was easier on me. I looked forward to the quiet time during the treatment everyday. I was tired after the first 2 weeks. I was able to work during all of this, but I knew that if I sat down at home I would fall asleep on the couch. I still try to get everything done before I sit down at the end of the day, or I can't get motivated to get up.

Have a wonderful night!!! Melanie

 

[Pea-n-Me]

My choices were fairly simple.

My docs told me right after the positive biopsy I was going to need 4 doses of chemo and radiation just based on the fact that it showed invasive cancer. I had to decide between mastectomy and lumpectomy. MRI showed just the one tumor. We didn't know about node status until my sentinel node was checked during my surgery. When it came back positive, I was told I'd need four extra doses of chemo. (If I elected mastectomy with implant, they would have waited until after radiation to place the implant; if I'd chosen IR I would have been able to have radiation after the surgery and chemo).

Radiation is aimed not only at the breast but at the clavicle (where cancers can spread 10% of the time according to my RO) and axillary areas as well. So sometimes even when you have a mastectomy, they still do radiation.

I am chosing to do so since I had extra nodal extension in the one sentinal node which does not affect my chancces for recurrance at distant sites (matastis) but does increase my chances for a second cancer in the skin, etc.

Interesting, I've never heard that. Do you have a link? What is extra nodal extension?

Congratulations, violetshelby!

Dawn, I hear and share your frustration. I don't know that I'd leave based on that alone, though, if this is the place you think is the best. Sometimes the best are the biggest and craziest. Don't make any rash decisions. These things do happen everywhere and it sucks. But hang in there, it probably won't be the last frustrating day you have, no matter where you go. Hang in there.

 

[TulsaDisneyFamily]

Dawn,
I'm so sorry to hear about the MRI. Can you call the surgeon's office and ask where else you might get the MRI? I know my surgeon practices out of 2 hospitals, but orders MRI's from several different hospitals and MRI facilities. Another question is can they get you in any quicker? Do you have more Ativan? You will need more for next time.

I will also pray for God timing and his hand with you during this time. Melanie

 

[Pea-n-Me]

Forgot to say (sorry) Welcome, Melanie. You have a great husband - tell him we're still waiting to hear the rest of the story when he gets a chance.

 

[TulsaDisneyFamily]

Thanks Pea-N-me for the welcome. Randy truly is a great husband! I will get him to tell the "rest of the story".

Melanie

 

[DeeCeeSW]

GAGWTA!

Thanks for the support, yes the whole experience was very frustrating but it was truly out of my control (and it's hard to admit that!).

I can have the MRI elsewhere, we did try to book it outside of the hospital last week but learned that many do not have the proper machine, so that would require that I travel to a different town that is further away than my hospital.

However, I just found out that the radiology group where I had my mammo DOES have the equipment. It is in my town. Of course, I was too late and could not reach scheduling tonight, so I will call first thing in the a.m.

Thanks for the

Oh, and I DO have more Ativan, thank goodness.

And HOORAY to those of you who are done or almost done with treatment!!!

 

[MerryPoppins]

I finally had my last chemo today ! Woo Hoo!!

Way to go, Violet!

And now it's time for...the Breast MRI that never happened!

I'm so sorry, Dawn. That really stinks. I hope you can get in soon.

Keep counting down, Lookingforward. You're getting there!

Melanie, we're almost neighbors. I live in Norman.

My mom's boyfriend is in the hospital. He's got a blockage in his intestines. If it doesn't clear by tomorrow they're looking at surgery. When his surgeon walked in today, it was the doc that did my mastectomy. My mom had never met her before, but introduced herself and praised her for doing a great job with me. She works in our Breast Care Center, so I didn't realize that she does other surgeries. I'll have to remember that in case I need surgery in the future. I love her.

GAGWTA!

 

[TulsaDisneyFamily]

MerryPoppins,
We are closer than you know. I grew up in Moore. It and Norman have changed so much through the years. I am amazed everytime I go and visit my parents.

I hope everythings turns out well for your family. At least you know the surgeon if needed.

Melanie

 

[lookingforward]

GAGWTA!

Thanks for the support, yes the whole experience was very frustrating but it was truly out of my control (and it's hard to admit that!).

I can have the MRI elsewhere, we did try to book it outside of the hospital last week but learned that many do not have the proper machine, so that would require that I travel to a different town that is further away than my hospital.

However, I just found out that the radiology group where I had my mammo DOES have the equipment. It is in my town. Of course, I was too late and could not reach scheduling tonight, so I will call first thing in the a.m.

Thanks for the

Oh, and I DO have more Ativan, thank goodness.

And HOORAY to those of you who are done or almost done with treatment!!!

I'm so sorry about your MRI! I had an "open" breast MRI because I am horribly, endlessly claustrophic! The open MRI was like a cat scan, I had to lay on my stomach with my "breasts" over two holes in the table. It was actually almost completely open and the valium I took to get through the experience (yes, even have to take it for OPEN tests) was unnecessary. Maybe they have an open one near you, it was great.

Extranodal extension is where the tumor cells actually break through the node wall, in other words, the cancer cells were "on the move". Its not vascular or blood vessal invasion. I actually emailed Dr. Susan Love about it because I thought it was really bad and I got this email back from one of her doctors:

Hello-

Thank you for contacting the Dr. Susan Love MD Foundation Website. Usually with a positive sentinel node a completion axillary dissection is recommended. This will determine how many more if any nodes are positive. The number of nodes is a big factor in determining risk. The extranodal extension does not seem to convey more risk – just mandates radiation which would probably be recommended anyways. Other features of the tumor, size, Estrogen receptor also make a difference as far as outcome.

Hope this was helpful.





Dixie J. Mills, MD

Clinical Research Director

Dr. Susan Love Research Foundation

www.dslrf.org

[B]your_question = my second opinion pathology report came back denoting extranodal extension of the one sentinal node positive for cancer. What does this mean as far as outcome or risk? Noone is giving me a straight answer![/B]

 

[Pea-n-Me]

Awesome idea emailing Dr Love's people. I'm impressed.

one sentinal node which does not affect my chancces for recurrance at distant sites (matastis)

Your case may be different with the extranodal extension, I don't know. But I think in general "node status" is one of the tools they use to predict the likelihood the cancer will recur/metastasize and this is why they offer additional chemo doses as well as radiation for postitive node status. (I think the extra chemo recommendation is changing for some cancers, though.)

From breastcancer.org http://www.breastcancer.org/symptoms/diagnosis/lymph_nodes.jsp

 

[lookingforward]

Awesome idea emailing Dr Love's people. I'm impressed.


Your case may be different with the extranodal extension, I don't know. But I think in general "node status" is one of the tools they use to predict the likelihood the cancer will recur/metastasize and this is why they offer additional chemo doses as well as radiation for postitive node status. (I think the extra chemo recommendation is changing for some cancers, though.)

From breastcancer.org http://www.breastcancer.org/symptoms/diagnosis/lymph_nodes.jsp

As for emailing Dr. Love it kind of gives you an idea of how crazed I was when I was diagnosed. I spent countless hours at night surfing the web and reading journal articles. My oncologist had to talk me off the ledge a couple of times when I read articles from 15 years ago and assumed the statistics quoted in them were today's reality! Breast cancer survival has improved immensely over the years....and she had to explain that to me a few times.

For nodal negative patients they can have the oncotype test which evaluates the DNA of the tumor to determine recurrance risk. For node positive patients they don't do that (its expensive) but your oncologist can plug in a patients particulars (nodes involved, tumor type, ER/PR status, aggressiveness, tumor size, etc) into adjuventonline.com and it will give the statistics: chance of recurrance without chemo, chance with treatment, etc. My chance of a reccurance WITHOUT treatment was 35% (and I had slow growing tumors and one lymph node with cells in a second), but with chemo and hormone treatment AND radiation my chances are now going to be 13%. Its still one out of ten but better than one out of three!

I guess the point I am making is its so much more than nodes status, its all the other stuff too. Its really hard to make decisions that could literally impact the rest of your life!

 

[Pea-n-Me]

As for emailing Dr. Love it kind of gives you an idea of how crazed I was when I was diagnosed. I spent countless hours at night surfing the web and reading journal articles. My oncologist had to talk me off the ledge a couple of times when I read articles from 15 years ago and assumed the statistics quoted in them were today's reality! Breast cancer survival has improved immensely over the years....and she had to explain that to me a few times.

Count me in as part of the crazed club.

For nodal negative patients they can have the oncotype test which evaluates the DNA of the tumor to determine recurrance risk. For node positive patients they don't do that (its expensive) but your oncologist can plug in a patients particulars (nodes involved, tumor type, ER/PR status, aggressiveness, tumor size, etc) into adjuventonline.com and it will give the statistics: chance of recurrance without chemo, chance with treatment, etc. My chance of a reccurance WITHOUT treatment was 35% (and I had slow growing tumors and one lymph node with cells in a second), but with chemo and hormone treatment AND radiation my chances are now going to be 13%. Its still one out of ten but better than one out of three!

I guess the point I am making is its so much more than nodes status, its all the other stuff too. Its really hard to make decisions that could literally impact the rest of your life!

I agree. I was diagnosed in 2003 and a lot of the reading material available then was outdated. The nice thing is that my team had a treatment protocol already in place for what I had and I was confident in their recommendations being part of a major academic cancer center (which, to those new to this, is why it's important to pick a good center, you don't want to second guess things later on). My oncologist never got into the nitty gritty of why with me (which I'm sure was a good thing ) but I was confident she had all the facts. She simply (and repeatedly) assured me we were going to fight it as hard as we could right away (knowing the recurrence rate with ER/PR neg tumors is higher initially) and that I was getting the most aggressive treatment possible. I was happy to hear it (but in a way still wished we could do more since it was also very aggressive, grade 3). My mammogram from 11 months earlier appeared normal. So to find cancer in my sentinel node freaked me out - I couldn't believe it could move so fast. And then to read that it had apparently been growing for years before we found it bummed me out even more.

 

[judithen]

Thank you, ladies. I'm so glad you're here. I don't post much, I don't visit often, but knowing you ladies share ups and downs...not to mention Disney...gives me community that I need. So good health, ladies, and God bless.

 

[MerryPoppins]

Wow Melanie! You visit our neck of the woods and we visit yours...my brother and his family live in Tulsa. He's a chaplain at Holland Hall school. I've lived in Norman since I was 6, so most of my life. Maybe one of these days we can arrange a meet. It'd be fun to meet you guys for lunch or something. We could talk Disney.

 

[DeeCeeSW]

I'm so sorry about your MRI! I had an "open" breast MRI because I am horribly, endlessly claustrophic! The open MRI was like a cat scan, I had to lay on my stomach with my "breasts" over two holes in the table. It was actually almost completely open and the valium I took to get through the experience (yes, even have to take it for OPEN tests) was unnecessary. Maybe they have an open one near you, it was great.

Oh my, thanks for letting me know that there actually IS such a thing as an open breast MRI. EVERY radiology group I have called has told me that they do not do them and that there is NO SUCH THING. I am (of course) limited by what/where my insurance will cover this procedure. I guess I will have to spend my only free day (that is one w/o doctor appts.), Monday, continuing to search for a place to have an open breast MRI before going to my new appt. this coming Tuesday (after yesterday's debacle, I was able to procure a morning appt. in a closed machine at my local radiology group).

I have tried using every search engine I know to find a place that will do the breast MRI in an open machine. I guess I have to keep digging.

I met with a plastic surgeon today. I already know he is not the one for me. He wasn't listening to me. First he discouraged me from having the prophylactic mastectomy. I told him that I know FOR SURE that I do not want implants. I told him that if an implant-free surgery was not possible for me, I will probably not have any reconstruction. Apparently, he and his assistant could not believe that I would even consider NOT having reconstruction, SOLELY BASED ON MY AGE. The look they both gave me when I said I may opt out altogether was hard to take--in fact, the assistant (a woman) looked like she was about to cry at the mere thought of me choosing to live the rest of my days with inserts in my bra instead of newly constructed breasts. Umm...isn't that my decision to make?

When I asked the doc if he would be able to do a flap (transfer from my back) WITHOUT an added implant, he said it was possible and that he had done this type of surgery before, but it would mean creating a smaller breast, a large B or a small C. Umm....I'm a D right now and had already told him that I wanted to be smaller. Was he listening? Apparently not. I asked him if he would be able to create this implant-free breast on the right (should I opt out of mastectomy for the left) and do the reduction on my left at the same time during the mastectomy surgery. He said it could be done but that he tends not to do it that way, because, he said, and I quote, "It is too tiring for me."

WHAT????!!!!!!!

I had to hold myself back from saying, "Well, gosh, I would hate for you to be tuckered out...perhaps you should take a little nappie before operating on me?" No matter WHAT he meant when he said that, it DEFINITELY came out the wrong way. And, my friends, at that point, I was DONE.

I have an appt. to meet with another plastic surgeon next Thursday. My MRI results *should* be in by then and I'm sure that will help.

What a ROUGH week for me, ladies. So much stress. So much that I actually threw up all over myself tonight. Sorry if this is too much information, but the events of this week made me sick to my stomach.

Tomorrow I take in a Broadway matinee and dinner at a fabulous NYC restaurant with my oldest friend to celebrate my 41st birthday (it's actually next Friday). Tomorrow WILL be a better day.

Someone PLEASE tell me this will get a little easier. Just a little.

 

[lookingforward]

Oh my, thanks for letting me know that there actually IS such a thing as an open breast MRI. EVERY radiology group I have called has told me that they do not do them and that there is NO SUCH THING. I am (of course) limited by what/where my insurance will cover this procedure. I guess I will have to spend my only free day (that is one w/o doctor appts.), Monday, continuing to search for a place to have an open breast MRI before going to my new appt. this coming Tuesday (after yesterday's debacle, I was able to procure a morning appt. in a closed machine at my local radiology group).

I have tried using every search engine I know to find a place that will do the breast MRI in an open machine. I guess I have to keep digging.

I met with a plastic surgeon today. I already know he is not the one for me. He wasn't listening to me. First he discouraged me from having the prophylactic mastectomy. I told him that I know FOR SURE that I do not want implants. I told him that if an implant-free surgery was not possible for me, I will probably not have any reconstruction. Apparently, he and his assistant could not believe that I would even consider NOT having reconstruction, SOLELY BASED ON MY AGE. The look they both gave me when I said I may opt out altogether was hard to take--in fact, the assistant (a woman) looked like she was about to cry at the mere thought of me choosing to live the rest of my days with inserts in my bra instead of newly constructed breasts. Umm...isn't that my decision to make?

When I asked the doc if he would be able to do a flap (transfer from my back) WITHOUT an added implant, he said it was possible and that he had done this type of surgery before, but it would mean creating a smaller breast, a large B or a small C. Umm....I'm a D right now and had already told him that I wanted to be smaller. Was he listening? Apparently not. I asked him if he would be able to create this implant-free breast on the right (should I opt out of mastectomy for the left) and do the reduction on my left at the same time during the mastectomy surgery. He said it could be done but that he tends not to do it that way, because, he said, and I quote, "It is too tiring for me."

WHAT????!!!!!!!

I had to hold myself back from saying, "Well, gosh, I would hate for you to be tuckered out...perhaps you should take a little nappie before operating on me?" No matter WHAT he meant when he said that, it DEFINITELY came out the wrong way. And, my friends, at that point, I was DONE.

I have an appt. to meet with another plastic surgeon next Thursday. My MRI results *should* be in by then and I'm sure that will help.

What a ROUGH week for me, ladies. So much stress. So much that I actually threw up all over myself tonight. Sorry if this is too much information, but the events of this week made me sick to my stomach.

Tomorrow I take in a Broadway matinee and dinner at a fabulous NYC restaurant with my oldest friend to celebrate my 41st birthday (it's actually next Friday). Tomorrow WILL be a better day.

Someone PLEASE tell me this will get a little easier. Just a little.

OH, it will get easier, each day will make things a little more settled. Its hard to visualize that right now, I know, but it DOES get better. I was diagnosed three months ago and at the beginning its a whirlwind of uncertainty.

I TOTALLY agree that you need a plastic surgeon who will listen and carefully discuss your options in a sensitive way. When I met my surgeon I just KNEW he was the one for me. He was kind and honest, but very thoughtful. I hope your second appt. goes much better!

http://www.dcamedical.com/mri-open-imaging-center-mri-ct-delray-boynton-florida.htm

is the website that describes the facility I went to that did the open MRI on my breasts. Since I elected not to get my other breast removed I will be having MRI's on it every six months, so it was crucial for me to know I could do it. It was a piece of cake. The website actually gives the make and model number of the open MRI, so maybe you could contact the manufactor (sp?) and see if they sold any in your area. I hope you find one!

Have fun in new york city (my old hometown!) and HAPPY BIRTHDAY. A year from now you will be in SUCH a better place...keep that in mind. A group of women in my support group wrote a book about their cancer experience and they titled it "A LUMP IN THE ROAD". Thats exactly what this is for us, a huge, ugly lump in the road that will pass with time. You will get great treatment have a wonderful life. And remember...the 40's are the new 30's! (thats what I keep telling myself as I look at my upcoming 47th in one month)

 

[NHAnn]

"A Lump in the Road"...I love it!!

Dawn, it WILL get easier Enjoy your day in NY!

More snow here today, we are officially well over 100 inches here in Concord this winter , and even with a little shrinkage in between some of the storms, the pile next to our front walk/driveway is over DH's head and he's 6' tall...
It's March, I fear I won't see the crocus and tulips I planted til Labor Day

DD couldn't figure out the router problem here so I am still on an "unsecured " wireless network and hoping that the 2 neighbors within 500 feet and the critters in the woods can't hack into our compters


GAGWTA!!