IDC (Infiltrating/Invasive Ductal Carcinoma) 2011 Sisters

stage1

Thanks, Joan, I just wish I could have done the prone position.  I was, and am afraid of the long term SE's just like all of us who have it on the left side.  I really can't understand that better methods have not been implemented, with all the BC donations and awareness campaigns and they have't come up with better treatments!

Joan811

Stage 1 -- I agree...I am also left side.  I have to have a cardiac catheterization the week after rads is done...I wonder if there will be any perceptible effects.  As I said, the last 5 will be on my back.
It is kind of amazing though how precise the rads are compared to years past.
The machine can block out the unwanted rays over an area, and it can target certain depths to minimize damage to organs.  But still, there are areas that are going to be hit.  I expect it will continue to improve, but not for me.
Rads are a costly insurance policy for what we cannot see.

wrennest

Hi Everyone, Just wondering if anyone is starting treatment the next few weeks. I have been on a roller coaster with my pathology reports. There was a question of the actual size of the IDC. I went to Boston and they are looking at a pretty aggressive treatment. I am a little bummed because after all chemo is done, they think I should have radiation as well. That was never on the table before or I would have thought about immediate reconstruction after mastectomy. I hope everyone is doing well. I am gearing up for port placement. I am so uneasy about the port. I am not sure why. I have been really enjoying showers. They have been clearing my head plus Helps take away my aches and pains when I get up in the morning. Those TE are the worst! They told me with the port, I can't shower for about a week. I wish I could just cover it. I can't imagine going through chemo without being able to shower. I will have to see if I can work around it.:) I hope you are all well and feeling ok! Take care! Sending hugs and good thoughts to you all!

Layla2525

Kaara thx for the prayers..I think they may be working...I did find a new surgeon and shes a girl! A very very smart and educated old girl,lol...anyway she told me to get ..an MRI before surgery so she will know if she should do any sentinel node biopsies. She says those are what cause the most pain  they are the axillary dissections if someone has too many positive for cancer nodes and they have to get those out. She says if they do need to come out then she can do it all during the same surgery; instead of coming back later for surgery again. Altho I will have to go back for exchange surgery if I choose implant recon. So I learned something I didnt know when I had the first surgeon.  Stage 1, I wish you the best with your lumpectomy.  Wish I got one when they first found the calcium on the mammo in 2002 but all they offered me at the time was "the works". I might try oral chemo but I really dont want the vein chemo..hmmm..do we get choices?

Joan811

wrennest, You are entitled to feel frustration about the port and the planning.  There were a number of things I didn't know to ask and no one told me before surgery.  I wouldn't change what I did; but I realize my future options, if needed, are different now that I've had rads.
Try to get all your questions answered - knowledge dispels fear and confusion.
Hugs and prayers to all.

Joan

Mimidi

Wrennest I had my port placed last January and did not have to go without showering.  Talk to the surgeon agan about waiting a week.  I got my port on a Tuesday and it was used on Thursday for chemo.  .I also ha immediate reconstruction.

RhondaKennedy

What is a "cold Cap" Sorry new to BC

khegidio

Hi ladies. I was diagnosed in September of 2011 at age 35 with IDC. I have a 2.4 cm tumor in my right breast as well as one lymph node involved. I have had bone, chest, pelvic, and abdomen CT scans and fro what we can tell there has been no spreDing beyond the lymph node. I started neo-adjuvant chemotherapy last September (TAC x 6, every 3 weeks) and just had my last treatment yesterday! Yay! I am bald as a cue ball and eager to find out when my hair is going to start growing back.



I just had a post chemo MRI this morning and am waiting right now to see the Dr for the results. Eager to see the shrinkage. We will also have a pre-op discussion.



I am having a bilateral mastectomy with immediate free-tram reconstruction on 2/08. Based on my MRI results and whether or not any surprises are found in surgery will determine my need for radiation. I am hoping not but hey.... After dealing with chemo - I know I can do that. I will also be on hormone therapy for 5 years after surgery since I am ER+.



Nice to meet you ladies. Anyone feel free to PM me if you have any detailed questions. Feel like I've been at this for a while now.

Beebop

Welcom Khegidio!

We have a similar diagnosis.   I also did neoadjuvant chemo.  Taxol x12 and DD AC x 4.   The chemo took care of the tumor (they found only 1mm left in surgery) and also there was nothing in the nodes.  I just found out recently that I do have to have radiation, I think because it was originally in the nodes.   I hope you get lucky and don't have to do it, but I guess it's all part of the process.  Just started on my Tamoxifen last week too.    Best of luck on your surgery!

billsjellybean

I'm a 72 year old Florida Resident diagnosed in the summer with IDC. Had a lumpectomy on 8/25/11 with no lymph node involvement. Finished 12 weeks of Taxol on 12/20/11. Along wih that I was getting Herceptin every 3 weeks. Because I was getting extremely cold and no amount of layering was warming up, after finishing Taxol I went to a lower dose every week infusion of Herceptin. Has anyone else experienced this extreme coldness? The experts don't think it is from the Herceptin; I still do. I  had some harsh side effects from the Taxol - swollen feet and legs, fatigue, sleep problems, effected toe nails neuropathy, tingling in hands, loss of appetite/taste etc. 

6 1/2 to 7 weeks of 5 day a week radiation later this week.  What can I expect now at this stage?

  

billsjellybean

I have a port and have not had any problems with it. You can take showers with a port. 

Mimidi

My oncologist doesn't want to take my port out yet and I am so glad.  Went for my year scans and bloodwork last week and it was so nice to use the port to draw blood and insert the dye without sticking a vein.  I thought I wanted it removed but have decided I will keep the port as along as I can because of the ease of access

I see my oncologist tomorrow for the results.  I am believing that everything is good.

chickintpa

Today I was first day of chemo- my cocktail TCH--- I go there at 11:30am but they thought the port was infected so went downstairs and the surgeon did a ultra sound to be sure there is no bacteria - he didnt see any so we went on with the chemo.. I feel great no problems - I drank a gallon of water through out the day and they gave me IV fluids also - trying to flush it out - I took one anti nausea meds tonight -- I ate soup and some almonds with tumerac on them and a protein shake with strawberries and blueberries fresh.. with ice and water - I am still up - I ordered two wigs --need to get my head into it "no pun intended" that this will happen -- I have to get through work tomorrow then I am off for the weekend to rest -- well it was 8hrs at the hospital - next time they promised it will be better and shorter - I had my computer,phone books etc - I wanted to tell people my first experience - because we work ourselves up -- (me included) and I made it through the first day.. Tomorrow is today! I will move mountains to get healthy! Everyone out there.. FIGHT  FIGHT and then FIGHT some more-- Sending HOPE and LOVE!

Joan811

RhondaKennedy wrote:

What is a "cold Cap" Sorry new to BC
Rhonda, Cold cap i a tight-fitting head covering that is chilled and worn to protect the hair follicles from the effect of chemo.  It is often successful in reducing hair loss.

Chickin-It is good to hear that you got through your first chemo with a positive attitude.  I didn't have chemo, but I had all the fears as it was a possibility.  Am glad you were able to nourish your body with some good food.  I wish you a good week end with minimal side effects.  Get rest.
I know you can do this!

Joan

Gayle56

chickinpa Thanks for sharing.  I start my chemo next Tuesday (4 doses of T/C 3 weeks apart) and I am so nervous about it.  I have looked at wig and hair covering sites but that is as far as I have gotten.  My MO said my hair should only thin so we will see.

she123

Post Check! Just learning!

Kaara

My RO gave me my oncotype score on Friday...it was 13.  No chemo recommended, but I wouldn't have taken it anyway.  I wanted the score just for my own benefit so I would know what my chances of distant recurrance might be, and they are very low risk.

Rads have been recommended, but after a long and educational discussion with my RO, I have decided to forego rads as well.  I have a very low grade stage 1 cancer and I had clear margins and nodes, so I think the kind of rads treatment they are recommending is an overkill for me.

If I were as young as some of the women on this site, my decisions would be very different. 

stage1

Glad you made the decision, Kaara.  Deciding was difficult for me.  You won't have to wonder if your heart will be affected in the coming years.  I think that is a wise decision.  My grade is higher than yours, so I had rads. 

chickintpa

Gayle- Hi  I know how you feel-- I my best friend son committed suicide in Nov and my Dad died last May.. I was went for a Mam only because I just got insurance and thought It was a good idea to do it before the end of the year-- believe me I get being scared-- and I don't have any other family- so if you feel the need to email me please do - I have 6 chemo treatments every 3 weeks so I will not be done until for 4.5mts then the surgery to remove anything remaining - and a bit of radiation.. so it is a long process and the no hair thing is very upsetting (I have ordered a wig because my Oncologist said I have about 18 days..ugh)however I have a oncologist nurse practitioner for 30yrs. who I was matched with who gives me really good advice and questions to ask .. she lives in TN and I live in Florida..she emails be back really quick..and we have spoken on the phone - she was right on with TCH (two chemo and herceptin)treatment that they wanted to do-I said I wanted the 20yr plan she said she believes I can be on the 40yr plan.. If you want someone who is not bias this program is wonderful. Ok let me tell you that I didn't get sick over the weekend- Wed I had the chemo, Thursday I started a headache (while at work) by 7:30pm I had a migraine that last to around 4-5am I took Tylenol but it didn't help- I fell asleep for a few hours got up and asked her about the headache..she said it could be a side effect from the anti nausea meds- and she was right - I had taken one more (because I didn't get her message until after I took it) but I didnt take anymore -- I have two others I can take but I didn't need it- no appetite but I did have eskiel english muffin - protein drink - and 2 bowls of cereal the first day- I take Juiceplus they are fruit and plant based and my oncologist said it was fine with my chemo- I double the dose and take a greens/greens (like having 6 salads in 3 tablets)Also VIT D3.. check your Vit D3 (they have to test it different) normal is 30thru 100 women with BC tend to have a lower D3 score- as it turned out mine was 30.5 (another good thing my nurse told me about) she said tried to get to 50-60 so did my oncologist- the shot I got the next day- to increase my white cells- ok this makes your bones really sore - your lower back your legs your neck.. your bones are trying to produce white cells because the chemo will kill the white cells and the cancer cells - hot baths and walking helped me-also they said Clardin D helps. I took one but it makes you dry- drink a lot of fluids sitting to long was too much- its Sunday I went to church the grocery store bank I feel much better- still sore but very manageable.. I drink a least a gallon of distilled water a day-- (not a water drinker before) with fresh lemon- yes it sucks- but our lives are soooo worth it! Try some yoga ..I have a friend who does Reiki and Reflexlogy- do want you need to do to stay calm.. visualization.. we need to stay positive.. it is curable.. believe it!

Joan811

Kaara, I found those treatment decisions to be very difficult and stressful.  I turned down chemo but took rads.  I hope you have peace and good health.

Chickintpa, I hope you continue to feel OK...sounds like you have a good attitude.  The hair loss sux but fortunately hair will come back and the BC will not.
Lots of good thoughts and prayers are going your way.
Joan

Kaara

I am going today to another RO to talk about a new type of rads, external beam partial breast rads, that is only 5 days 2x a day externally to the surgical site only.  It's done in one week.  This seems more in line with the early stage of bc that I have.  If I meet the criteria, I will have it and then try to take one of the anti hormonals like tamoxifen.  This way I get some radiation to kill off any stray cells left by the surgery, but not one that is so invasive to my body as the six week version.  There is less probable damage to the heart, lungs and rib cage with this type rad.

Right now it is only given to women over 60 with very early stage ER/PR ++ bc, so I meet the criteria.  I pray this isn't another wild goose chase! 

Joan811

Kaara,
Good luck with that.  I had a ten day plan offered to me - radiation to the site only and participation in a clinical trial.   I may have mentioned it already...I was so tempted; but in the end I chose 30 days because I know my body makes cancer.....but I am believing in the study that shows that most early stage slow growing BC stays close to the primary site.
Best wishes,

Joan

Kaara

Joan:  I had my app't with the RO at the cancer center.  She was awesome..a perfect example of what a knowledgeable caring oncologist should be.  I got all my options explained to me.  I didn't qualify for the clinical trial on partial breast rads because...get this....my prognosis is too good!  I have none of the high risk factors, so guess that's good news.  I'm getting scanned on Monday, but may not meet the criteria anyway for the PBI, because my boobs are too small...rads site can't be more than 1/3 the size of the entire breast, so we'll see.  Otherwise, I'm going to end up with the three week fractionated, modified to protect my heart.  It's been a long road to get to this point, but worth it to find someone that I feel I can trust to do the job the way it needs to be done, with as little damage as possible.  

Joan811

Kaara,
It is awesome when you just know you have the right doctor.  That has happened to me a few times - when I knew beyond a doubt that I was in the right hands.  What is fractionated rads?  Will you be in prone position? That also may require larger breast.   I understand about the study - they usually have enough participants who are lowest risk.   So great to hear that you have good options.

When do you start? 
Best wishes for peace and rest this week end.

Joan

Kaara

Joan:  Fractionated is a three week version of rads, whole breast, but done at different angles.  I won't be in the prone position due to small breast size, but they use a breathing technique that removes the heart from the beams and prevents damage.  I go Monday for my scans and then it's decision time, but I want to get the report from my cardiologist about my echo cardiogram before I actually start.  RO agreed because they want a baseline for my heart from which to work.

mooserella

I'm fairly new here.  Had surgery on Dec. 21, 2011.  Small IDC tumor in the left breast with no invasion into the sentinel nodes, but this is not my first time with cancer, had stage IIB endometrial cancer diagnosed in Dec. of 2008.  I had LAVH and BSOP for that followed by internal brachytherapy.  I am currently waiting for my Oncotype score, and I am starting to get a bit ragged.  I really don't want all of the complications that come with chemo, and I know that it's my choice ultimately which treatment methods I go with, so I have some tough decisions to make if I come back with an intermediate score.  I am 55 years old so I know I could have a lot of life ahead of me, I'm just feeling so tired.  I think the worst part is that I need to be strong for myself because my husband does not want to talk about it, and I don't have anyone in my immediate circle who has had cancer.  I really don't think you can relate to the way it feels inside until you have experienced it personally.  I will be going for at least the 6 weeks of radiation, but at least my hospital has a state of the art machine that allows for shielding of the heart, so I'm not so worried about that sort of damage.  I just want this to all be behind me, and I'm pretty sure that I will never be able to forget the feeling of total vulnerability this has given me.  Anyway, I just thought I'd drop in and say hi.

WaveWhisperer

Mooserella, I think a lot of us are in the same boat, feeling we have to handle this alone. Frankly, even friends and family who are willing to talk about it still don't know what it's like, and some of the questions they ask and comments they make are more hurtful than helpful. That's why these forums are so helpful. We can rant, complain and feel sorry for ourselves without judgment by others or regret. There's usually someone who has walked in our shoes and knows the right thing to say.

This isn't my first cancer either. I had early-stage colon cancer 14 years ago, but luckily after surgery did not have to have chemo.

You may ultimately face the same decision -- chemo or no chemo -- no matter what your Oncotype score is. Even with a low score, some of us -- including me -- decide to go ahead with chemo, even though the research says it may be of modest benefit. I chose to because, down the road, I don't want to look back, in case of a recurrence, and wonder whether chemo might have prevented it. I want to know that I did everything possible to fight this.

I'm in the middle of chemo now, and it's no fun. During the darkest days, I tell myself I can't do it and berate myself for choosing to. But then things get better, and I'm willing to give up several months of feeling lousy for the chance to live several more decades. And I still have 6 weeks of rads ahead of me.

I know you feel low now, but your diagnosis is a good one, as these things go. Your tumor was small, you have no node involvement. Those are positives.

Ask questions here, or on some of the other threads. There are several for women between 40 and 60'ish, one for older women "with more sense." I didn't make up those names, and I can say that with impunity because I'm older than you!

Stay strong and come back often. Here we're family. 

Blessings2011

Ladies - just caught up with all the new posts...

I had my BMX/TEs done on December 5th. Never had the wire insertion, but I did have that radioactive isotope injection in the left breast to light up the SNs. Nurse told me to massage the breast to take away the sting, and to spread the injected material around quicker. Funny - I ended up in the farthest bed in Pre-Op, in view of all the other beds, and there I sat, calmly massaging my breast. I wonder if the other patients thought it was calming me down!

Surgery went well. SNB clear. Pain hard to control because I didn't want to use the morphine PCA, so that was my fault. Got discharged in less than 24 hours. Went home to a hospital bed and a room set up for all contingencies. Hubby was awesome.

Worst part was the TEs....I was certain they were trying to kill me. I cried every day for two weeks, I think, until several folks on this forum convinced me to just take the pain meds (Norco). Once I did that, it was good.

I'm 7 weeks out. Healing well. TEs and fills are actually very doable.

Best part was final path report: lymph nodes were clear, with all clear margins - no chemo, no rads. The DCIS they identified was three times the size they thought it was.

Weirdest part: no evidence whatsoever of the IDC they had identified. It had been small to start with (.5 mm and 1.5 mm) and the standard answer was that the "core needle" must have sucked it all out during the biopsy.

Onco said no need for BRCA testing; no need for Oncotype testing. I just need 5 years of Arimidex. That's been the hardest to wrap my mind around - I have so many defined  contraindications against taking this, and I've asked for another meeting with the Onco. With such a small risk of recurrence, is the AI really that important? I want to be open to options.

Just wanted to send everyone big prayers and bigger hugs as you each go through whatever treatment has been prescribed for you. You all rock!!!!

xoxoxoxo

Kaara

Glad everyone is progressing well.  I know most of you on this thread had some serious surgery and difficult recoverys...mine was just a lumpectomy and SNB...I have nothing at all to complain about.

My RO called me earlier in the week and said they could not find the surgery site to plan the partial beam rads that I wanted.  She said it healed as though it never existed...hummm.  Anyway, I was left with only whole breast rads, which I didn't want, so I'm opting out of rads altogether.  My prognosis is excellent with low scores all around, so at this point I will move on.  I will probably give the tamoxifen a try, and if I have too many SE's opt out of that as well.

I'm working with a naturopathic doctor who is giving me supplements and IV vitamin infusions.  My anti cancer diet is in place and working well, so I'm doing a lot of things to prevent a recurrence.  I think that doing nothing is not an option for anyone.

Prayers and positive healing energy to everyone! 

coronamom

Kaara - I'm curious as to where you were going to have our external beam partial rads?  I am considering this but it is as a clinical trial with proton beam.  I had clips put in at the surgery site so then can aim the beam at the correct part.