neoadjuvant and adjuvant therapy

EZhang123

Hi I got the final result of my 2nd biopsy on 10/16 and confirmed that I have DCIS in my left breast, and DCIS plus Stage 1 cancer on my right breast (so multiple areas). My surgeon suggested bilateral mastectomies including nipples and chemo after. My medical oncologist suggested doing chemo first because I am HER2 positive. I plan to have reconstruction. I’m quite lost. Anyone had such experience?

LivinLife

Hi and Welcome though sorry you need to join us. I have not had the experience you describe. there are others on this site who have been diagnosed with cancer and other issues in both breasts. I had a bilateral mastectomy just under 2 months ago. I had DCIS Grade 3 with expansive comedo necrosis plus a mess of other benign and precancerous issues in my left breast. I'd already had two stereotactic biopsies in my right breast. I have scleroderma so was unable to have radiation so lumpectomy was not an option which then meant mastectomy. I chose bilateral more due to not wanting to be left with one large breast - I'm 58 so age and gravity have been unkind which really made the decision for me. I did well soon after surgery. Did not use anything other than Acetaminophen and Ibuprofen after being in the recovery room. If you choose to have a BMX you likely will do well even if you have to work through some residual symptoms. I'm in P.T. now to help with cording issues, which are nearly gone and all the tightness from surgery. I had an ongoing tennis elbow issue which complicated things. I've been able to do most things since very early on.

Others will hopefully chime in at some point. Depending on the type of cancer you have you may want to start a thread in that section....

EZhang123

@LivinLife, thank you for sharing your experience. I finally got to speak to both the surgeon and oncologist again and confirmed that I'll need to do both BMX and chemo no matter what. It's just a matter of the order. I'm glad you are recovering well and the PT works. It's encouraging to hear that you are able to do most things since very early on. I live by myself so don't have someone that I can rely on constantly.

@JavaJana, thanks for sharing your information. Yes, the size of the tumor does make a difference. my size of the tumor is over 40cm so I am leaning towards neoadjuvant now. I'm just so shocked that for someone without any medical background, I'll need to make this kind of decision.

EZhang123

@JavaJana, thanks for sharing your information. Yes, the size of the tumor does make a difference. The size of the tumor is over 40cm so I am leaning towards neoadjuvant now. I'm just so shocked that for someone without any medical background, I'll need to make this kind of decision. May I ask you if you did you use a port during your chemo? If so, do you find it helpful and recommend it? My surgeon is concerned that if use a port, it may post challenge when she needs to remove the breast tissue around that area.

Also, did you use Cool Cap? Thank you!

WC3

EZhang123:

My cancer was HER2 positive and about 30mm (3cm) by the time I started neoadjuvant chemotherapy. I was given a choice to do adjuvant chemotherapy instead as I had some concerns about neoadjuvant chemotherapy but ultimately decided to go with neoadjuvant chemotherapy as my MO seemed to have a preference for it and I generally prefer to follow the guidance of those more qualified than me on these issues.

I will admit it was very difficult living with the knowledge of the cancer in me during that time, however I had a pathologic complete response which gives me more confidence that any micromets got wiped out as well. I did have a port and probably would not have been able to do chemotherapy without it on account of bad veins.

I did cold cap but lost much of my hair anyway. However my goal was to prevent taxane induced permanent alopecia, which is not common but more of a risk with Taxotere than Taxol, and while I don't know if the cold capping helped, all of my hair has grown back. I had a skin sparing, but not nipple sparing bilateral mastectomy with expanders placed which were later switched out for silicone implants. I had to go with those as I did not have enough fat for DIEP (very ironically) and was not in the condition for SGAP.

MinusTwo

If you are HER2 positive, the protocal is chemo first. It's an aggressive cancer and they want to get it stopped before any more spreading and hopefully shrink the tumor before surgery. Good luck

EZhang123

@JavaJana I didn't know there is more options for the location of the ports. Thanks for letting me know. Will definitely ask the MO and surgeon. Also, it's helpful knowing the option of the ice pack cap in Amazon. I will look into it as well. The professional one is so expensive without insurance covering it. My tumor is around 40mm... sorry for the confusion. You probably won't hear anything from me now if it's 40cm...lol.

EZhang123

@WC3 Thanks for sharing your experience. I feel like our situation is more similar. Yes, my MO highly suggested me to do the neoadjuvan too. I think that's where I'm heading. I need to see if I have to use Taxotere. My MO did say the hair loss should be temporary and I certainly hope so. How many sessions of chemo did you have? And how soon after the chemo did you do the surgery? I want to give some sort of idea how long I need to be out to my employer but it seems everything is so uncertain and it's hard to give them a timeline.

EZhang123

@MinusTwo Thank you for your comment. Yes, that's what they told me too. My radiology oncologist told me the reason is HEA2+ respond to chemo very well and the size of the tumor may shrink a lot so for some women, they may not need mastectomy after the chemo. However, my surgeon said my situation is quite unique that I will have to have mastectomy even though the tumor size shrinks after the chemo.

MinusTwo

EZhang - yes - either Taxotere or Taxol are usually the drugs that 'kick start' the Herceptin - so they are given together.

EZhang123

@MinusTwo Thank you! I will look in these 2 drugs and ask my MO about them

MinusTwo

Ehang - if you check people's signature lines you'll see that the most prevalent drug combo is TCHP (taxotere, carboplatin, herceptin & perjeta). Some people have taxol but you can't combine herceptin & adriamycyn as both could damage the heart.

To add to the discussion about ports - I was so glad someone told me to trace my bra straps on my chest with a sharpie so that the port was not placed directly under one of the straps. It also gave my surgeon a laugh.

Go to My Profile and fill in your diagnosis - then you can add your treatment when that is finalized. You need to make it "public" so that these discussion groups can see what you've entered. It helps people know more to answer your questions.

I found the contemporaneous chemo thread very useful - such as Starting Chemo October. It helps to travel the road this with others experiencing the same things. I also read the thread from a month or quarter earlier just to learn more.

WC3

EZhang123:

My cancer was triple positive and the protocol for that if taxotere and carboplatin are used is 6 infusions of chemotherapy, each infusion spaced 3 to 4 weeks and combined with the targeted therapies Herceptin and Perjeta, then the Herceptin and Perjeta infusions were continued such that the total length of time for the targeted therapy was a year. The protocol is called TCHP. I did not have many side effects from the targeted therapy alone, just the chemotherapy, which took 4 months. I had surgery 7 weeks after my final infusion (of chemotherapy) which is a bit far out but it worked out because my CBCs were slow to recover.

Some people work during chemotherapy. More power to them. It was not an option for me though. It took me quite a while to recover from everything but I think most people recover faster.

EZhang123

@MinusTwo Yes, you are right. Confirmed with the oncologist today. I’m going to have TCHP as well. I finally made up my mind and go with chemo first. Will try to update my info and definitely check out that thread. Thanks for the idea of tracing the bra line I’d never have thought about that.

EZhang123

@WC3 I think I will go through pretty much the same process as you. For now, I think I will try to work from home during chemo and see how well I can take it. I am worry that just lying on bed won’t help me mentally.