Decision for Chemo and/or Radiation taking too long

katcar0001 · January 2015

katcar0001 · January 2015

I had my mastectomy on Dec. 4 for Stage 1, grade 2, 1.5cm IDC no nodes, 100% ER/PR+, 4mm from chest wall, Ki-67 4%. Due to holidays and communication f*ups, the Oncotype test was not ordered. It will be ordered tomorrow but we will not get the results for probably 3 weeks since the tissue has to go to the U.S. for testing. My insurance would not cover Mammaprint, which is the test done in Mexico.

Everything I have read says you should start chemo within 6-8 weeks of surgery. http://www.breastcancer.org/research-news/20140220...

I did at least get my doctor to agree to me starting Tamoxifen tomorrow, which he was previously did not want to prescribe until after chemo and rads. He keeps saying there is plenty of time, but I am getting really worried.

Should I push for rads now? Is that ever done before chemo? Any other thoughts, suggestions?

SpecialK · January 2015

Several thoughts - if you look closely at the cited study it says that starting chemo earlier rather than later is more critical for stage 3, Her2+, or TN, none of which apply. In the cited study the disease free survival, relapse free survival and overall survival were similar for all groups - those at 30 days, 60 days, and greater - except for those groups I just mentioned. if your Oncotype results come back in 3 weeks you could still begin chemo within 60 days, if the score warrants. Your tumor characteristics are not super aggressive, and it sounds like your margins are decent. Are you being told you need rads even with a MX? I think starting hormonal therapy is a good idea as it may have more potential benefit than chemo for the specifics of your tumor.

katcar0001 · January 2015

SpecialK, I appreciate your lucid response, and I am reassured. I have not been so lucid lately. I have had so much pressure with this Oncotype thing that I panicked. I am the one who had to find and contact the Oncotype partner in Mexico to order it, go to pick up my samples, package them up and mail them, fill out the form for the doctor to sign, etc. Tomorrow, a friend is making the two hour drive to see the same doctor, so she will have him sign the form and email it to the company. If I had not done all these steps, I'd still be sitting on my thumbs waiting for the doctors to order it. They didn't seem to know how, and it was not a priority during vacations and holidays. In the meantime, time was ticking. I have learned what it is to manage your own healthcare.

They are considering rads because they would have preferred a 5mm distance from the chest wall. Is 4mm acceptable by most standards without rads?

SpecialK · January 2015

katcar - I am glad my response was helpful. Unfortunately, it seems that we all have some moments where we have to take the reins at various points in this process - it is stressful when you are already dealing with the shock of diagnosis and decisions - I am sorry that the ball was dropped on your Oncotype. None of us should have to run around doing the job of medical professionals - that is why we have them! I understand the insurance resistance on Mammaprint - mine refused it too, and then I got the $5,000 bill - I refused to pay for it since I had signed nothing saying I would - but it was a surprise I did not need! My insurance company had paid the transport fee to California, so I sent them an assignment of benefits form and all they were paid was the fee, they ate the rest of the cost, but not until after a LOT of paperwork. I am not versed enough on chest wall margins to answer your rads question, but possibly because it is the posterior margin they feel you are in a better position with rads treatment. Are you planning reconstruction?

katcar0001 · January 2015

SpecialK - How fortunate that you did not get stuck with that $5,000 bill. I can just imagine the paperwork involved. As you indicated, it such a bummer we have to deal with issues like this when going through the stress of the disease itself. I am still waiting on a surgeon's report to send to my insurance company to get reimbursement for the surgery, pathology analysis and hospital stay. I am afraid they are going to deny my claims until I get that, and my doctor is very busy now catching up from being gone for 3 weeks.

I am plan on having reconstruction with tissue expanders and implants. I am not a candidate for the other types of procedures as I do not have enough flesh anywhere else, and I don't want to go through such invasive surgeries. My friend received rads for TNBC with 4 nodes, and her skin is healing great. I know everyone is different, but I am hoping I heal as well as she did if I get rads. I don't expect to have as many "zaps" as she did nor the boosts, but I don't know that much about rads or margins either. I was not expecting to get rads since the surgeon was pleased that the tumor was not attached to the chest wall. He is on the fence about the 4mm distance and will be discussing it with the oncologist and radiologist on his team. I will get second opinion as well.

BTW, my friend is planning to do the Brava procedure with fat injections. It will be interesting to see her reconstruction process.

Elapsing time to treatment is playing with my head, so I am going to go relax at the beach and get warm for a few days. Thanks again for your encouraging words!

SpecialK · January 2015

katcar - expander to implant after rads has about a 50% failure rate, so if reconstruction is important to you that is something to consider. Many plastic surgeons will not go this route after rads, but will only do lat dorsi recon, or other autologous flap surgeries. Radiated skin does not like to stretch, and there is a greater risk of capsular contracture on the radiated side, so symmetry can be problematic. Some have had greater success with expanding the skin prior to rads, even overexpanding to allow for the additional tightness that can occur. With radiation even if you have fewer sessions in number, usually the intensity of "grays" is the same - fewer days but higher concentration of radiation. Your friend doing Brava may have an easier time because the addition of fat seems to help the radiated skin. I am having skin healing issues and my plastic surgeon has done one fat graft so far to help vascularize and beef up the thin area of skin. This is something you may want to research as well - doing a couple of minor fat grafts (you don't need much fat at all) to help the skin before asking it to stretch. There are a couple of threads that discuss it. It is a good idea to get a second opinion - to risk not being able to reconstruct, if that is important to you, should be a factor and consensus on treatment will make your decisions easier. Relax and enjoy the beach!

katcar0001 · January 2015

I am disappointed in the high failure rate after rads. I knew it was more difficult, but that's quite a staggering number. You know your stuff when it comes to reconstruction, obviously. I have done so little research on that part so far. I will talk to some surgeons about stretching the skin before rads. I am not going for big implants, so maybe that would be okay. Or, perhaps I'll just stay flat and get a cool tattoo. I would be concerned about limited arm movement after a latissimus procedure. And the recovery from the surgery sounds brutal. I know many women are pleased with the end result. I guess time will tell me the answer to this one as well. Thank you for all of this valuable information.

SpecialK · January 2015

The problem with trying to do recon (expanders at least) prior to rads if chemo is not involved is the time crunch. You would need to have the expanders placed, wait to heal, then expand over a period of weeks to months, then do rads. If you do not require chemo they will want to start rads as soon as you get the results from your Oncotype. Since the purpose of rads is to zap any cancerous cells in place in the breast asap, they will not want to delay. Because they did not place the expanders simultaneously with your MX, you are behind the curve on timing. If you skip chemo and move on to rads I would speak to a plastic surgeon about a couple sessions of fat grafting prior to any placement of expander, and let a significant amount of time pass - like 6 months to a year - before attempting recon. Time and some fat are your friends in this endeavor. Are you a b-lat mastectomy, or a uni? Another possibility if you went bi-lat, if you are wanting to stay on the smaller side, is to go directly to implant. Some plastics can do this, and some rad oncs are good with it.

katcar0001 · January 2015

Oh, boy. I did a unilateral. Well I hope no rads but if so, I will take your advice and ask for the fat injections and let plenty of time pass to heal before getting recon. Thank you for letting me know about all these details. So much to think about! I hope today is a good day for you. I am off to the beach, although I won't be able to swim as my incision is still healing but at least I will get plenty of vitamin D!

katcar0001 · January 2015

I don't have the numbers yet but Oncotype results are in, and it's low! Probably no chemo -- happy dance!

Chloesmom · January 2015

so glad your menu bets are low. I'm waiting for mine. The BS forgot tom send in mine in December and the pathology dept was behind sending it out.so I won't know till next week. I am very happy with the surgery, just bummed to be in limbo waiting for the results because of a dropped ball. I have to pay 20% of my test which is a chunk of change! but that's insurance for you. Just will be glad to get the numbers and move on to the next phase

katcar0001 · January 2015

I sure understand about the dropped ball and then waiting and waiting for results. I hope that you get to move on to the next phase pronto. I don't know if insurance is paying 100% or 80% but I don't care about the money; I am so relieved to have done the test. All the best to you! Let us know how you're doing.

SpecialK · January 2015

katcar - so glad you finally got the results and that they were low! Excellent!

katcar0001 · February 2015

Update: Hoping to get some input from you more experienced members.

The Oncotype was low but close to borderline (17). MO (the one I don't care for) and BS said congratulations, no chemo. Congratulations? I did not win the lottery. Of course, this same MO told me to go see a psychiatrist when I was asking too many nuanced questions. I responded with, "I have cancer, I don't have the flu." Poor guy, I was feeling sassy that day. Anyway, I went to see RO, and he said most of my prognostics were favorable except Grade 2 and LVI. He did not make a distinction between extensiveness of LVI (the tumor had focal LVI), and he said it was not a good thing to have and he recommended rads. He did review my case with a tumor board who came up with the same recommendation but they are all at the same hospital. I hate to even say this--but their equipment is brand new from Scotland and maybe they need as many patients as possible to pay for it? Anyway, I went to SF and met with Dr. Wei Wang for another onc opinion as I was nervous about not doing chemo. He agreed no chemo and probably no rads either. He said I could meet with Dr. Barbara Fowbles at UCSF for a second RO opinion, but he thought she'd not recommend it, and he mentioned a similar case. I failed to get an appt with her as they were moving the RO office, and I had to get back to Mexico for removal and biopsy of a lump in my right breast (confirmed birads 3 by CPMC in S.F--same as diagnosis here in Mexico). So.... supposing that all is fine on the right side, would you do rads if you were me? Note that reconstruction is secondary to me. I could definitely put it off for quite some time, and I could go either way on nipple recon. Thank you amigas (and amigos)!

Decision for Chemo and/or Radiation taking too long

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