Lumpectomy Lounge....let's talk!

Thanks Justmaximom15. Knowing that the SE may not be too bad will definitely be part of my decision making.

In your pocket Poodles. Best of luck tomorrow!

Melclarity, I get the impression that you always keep rising back up.

LaNena, to add to what others have said, I expected chemo to be like having the flu for three and a half months straight. It was uncomfortable at times, but not even close. My MO said "I recommend chemo. With one lymph node, it's recommended. With four, it would be required. If you tell me that you want to do everything possible, we'll schedule it. If you have any doubt, I can order an oncotype test." I said "Just get it out of me." Similar to Sloan's doctor's line of thinking, I did not want cancer to come back in ten years when my son is graduating from high school and wish I had chosen chemo when I had the chance to.

Melclarity said: " As incredibly hard as Chemo was for me, I have no regrets, my BS was over the moon that I took on the task..because he said if you are not in the right mental frame of mind, it would have been extremely difficult. It was tough mentally absolutely, but I kept rising back up, it was the physical that I suffered with. Its now fast becoming a memory, and my BS just wants me to move on from it."

I can't agree with this more. A lot of dealing with BS and all it's attendant issues is attitude. This was the first hurdle I had to deal with. Rather than moaning "Why me, Lord?", I said, "why not me?" What makes me so special that I should be spared breast cancer? Lots of people have it--heck, my family is riddled with cancer. It could certainly be worse. At least there is treatment, even if I have to endure some SEs.

Sure, I've had my teary moments, but mostly I've just ducked my head down and kept on walking. There's only one way to the other side and that is straight through. Now that I'm on the other side of chemo, I'm pretty amazed at how well I handled it.

I have to tell you, the worst thing that ever happened to me was waaaay worse than cancer. We have a severely mentally handicapped, autistic son who is 20. He was so very medically fragile when he was born--we couldn't leave him with anyone. I thought I would die of depression and fatigue. I don't think I even came up for air for 7 years. But I didn't die. In fact, after awhile, I thrived. When people said they were sorry for me, I let them know that I didn't need their sorrow. My son is both the greatest and the most heart-breaking thing that ever happened to me, and we took care of him at home for 17 years until we just couldn't manage it anymore (he's a 6'3" one year old, full care. You can only imagine...) Having my son prepared me for all the other crises we have ever encountered, including my husband's full disability at age 47, his several near-death experiences, another son's suicidal depression, my struggle with bipolar disorder, and my myriad health problems. Honestly, breast cancer has been a drop in the bucket compared to some of the other stuff.

I realize that everyone comes to the table with different fears and expectations. I just want to encourage others to keep going forward. Don't allow yourself to be overcome by grief and fear. If it's too much for you, seek out help. Life does go on. Whether we decide to participate or sit on the sidelines is a decision we control.

Peachy2 : Thanks for your insight. You are all helping me clarify my thoughts and prejudices before i make my decision.

LaNena - There is so much to digest, and you're doing your homework which is perfect! Just remember everyone is completely different. Some people blitz through Chemo, my MO said the older you are the easier it is..though Im 48 he said it was really odd as my genetics reacted like a 30yo to Chemo, plus I had other factors at play. Im drug sensitive so it turned out. But I got through it! and honestly, its just making a decision that YOU can sit with, nobody else. I would choose in my situation same thing honestly. I had aggressive treatment 4yo for DCIS, lx rads and tamoxifen and it came back aggressive 3rd stage, so this was the next step for me. Recurrence is NOT going to happen to everyone..I am a VERY SMALL percentage. Lucky I guess LOL...take your time ask questions and put you FIRST!!! hugs

ps... LaNena- ask about the serious risks of chemo vs reoccurrence rates. Like risk of leukemia etc... See which carries a higher risk. I'm asking many of the very same questions with my mo tomorrow.

MLP3, I had two positive nodes and extensive LVI. My BS could not get clean enough margins on me and had me come into to her office only 5 days PO to deliver the news that I needed an MX. I did skip chemo due to a low, moderate oncotype score and I am grade 2 not 3. I had a lot of DCIS grade 2 with necrosis and thankfully since my tumor was 12 o'clock she took my nipple during the mx because there was DCIS in the stem of the nipple. I think you need to discuss this with both your BS and your MO and make a decision quickly. They may recommend chemo first and then MX if that is what you choose to do. Waiting for the mx and then healing will delay chemo.

BTW, MLP you had clear margins, right? You may not need an MX or it seems like your BS would have already told you. Also, I was told by two MO's that they do not factor in LVI when deciding on chemo. I think your grade 3 is more important. Now since you have no nodal involvement, I personally would opt for chemo. Why? Because sometimes in rare cases the LVI skips the lymph nodes. Chemo should kill any stray cells.

Thanks Molly... That made things much clearer. Yes to clear margins and my bs didn't mention mx. Dana farber seems to do things differently in that once you have surgery, you're done with the bs and the mo takes over from there. I don't even have an ro. Whereas MGH assigned one.

And you're correct, chemo would take care of stray cells that may have skipped the nodes that may have travelled elsewhere. Extensive LVI with multiple foci and blocks enters the blood stream, according to this site. I don't think I'd be comfortable without chemo knowing that it could mets somewhere else. I may be 48 physically, but I'm mentally 28 a good 75% of the time! Not ready to pack up this life any earlier than I need too😉

good luck tomorrow poodles!

Re: chemo. Obviously some people really struggle with side effects, but I have to say after two cycles I am pleasantly surprised. I have some days where I am quite tired and a bit queasy, but even on those days as long as I take downtime, I am also able to go out, spend time with my kids, etc. I have two really good weeks every three week cycle, and those weeks I am pretty well normal and even work full time! I'm certainly not enjoying chemo, but it is not nearly as bad as I anticipated, I anticipated four months of always feeling sick, but hopefully sometimes a little bit less sick! I didn't anticipate weeks where I felt completely normal except when I looked in the mirror and saw my head!

Even though sometimes I read things that make me wonder if I really needed chemo, at the end of the day I am glad Im doing it. Like Sloan, if I hadn't and had a recurrence, I would be very upset at myself that I hadn't when it was offered.I did have one positive node, so it felt like a no-brainer to me ftmp. I think, if I was a grade 3 or moderate omcotype or anything else that seem to somewhat sognifcantly increase my risk of Mets or recurrence the way my lymph node does, I would feel the same way…but everybody has to make the decision they are comfortable with, after doing the research, and getting second or third opinions of required.

Gemma - good for you! It's amazing how much calmness comes with a decision. I have a question: Did your ER, PR and HER scores come on your Oncotype test? If so, where is it on the test paper?

Wonderful Amy!!!

Hi! I'm joining the Lounge.

Amy, I'm still waiting on the OncoType but I think I'd make a similar decision to yours at a score of 18. I also have a Grade 1 tumor and no nodal involvement found. Looking at the OncoType website, it appears you don't see much benefit from chemo until you get into the high score range. But I support each person's decision, because no matter what the Onco score it appears that chemo does reduce the risk to some extent. My path report expressed ER & PR as percentages - I am curious to the scores I will receive from OncoType. I too will have radiation next if I don't need chemo.

MLP3, I'm eager to hear what your MO says about risk vs benefit for chemo.

Gotta say, there is so much strength to be found here.

Edit: I updated my profile

Alice

Moondust: Hi Alice, welcome to the lounge. Sorry you have to find yourself here, but it's a great group of women! My ER and PR were in percentages on my path report, as well. I was 100% for both. I was anxious to see what the oncotype would say as I know they figure it differently. It didn't change the outcome of them both being positive, but it's interesting to see that I'm not at the tippity top of the scale give my previous 100%.

Amy

Hi Ladies,

Just wondering about radation treatments. How long was yours and when did you start to see the signs of treatments on your skin? What did you do to treat your skin?