Hi Jolene,

I was treated at Scripps by Dr. T and my insurance covered it completely because Scripps is in the "provider network". I looked into going to Germany earlier. My insurance (Anthem Blue Cross) would have reimbursed me for 70% of the cost for treatment in Germany because it was "out of network" and the cost (based on what I had read here) was less than their established acceptable fee for the treatment. I called the insurance to get this information. I do have a very generous plan with Anthem, self-funded by my employer - I know of people with Anthem whose plans are quite different.

Spica

Hello All,

I went to my podiatrist yesterday for an ultra-scan on a new nodule that formed on the foot. This 'new' nodule was due to my ignorance. Massive Trauma to the foot after both rounds of radiation. This 'new' nodule is up high on the ball of the foot. About an 1/16th of this nodule is located within the perimeter of the old radiated field. The other part of the nodule is outside the perimeter field.

I mention to the podiatrist about determining the proliferating fibroblast stage. I was hoping he could enlighten me on this. Unfortunate, but not surprising, he had never heard of this stage before Therefore he was unable to help. At one point, when I began radiation, he was skeptical about RT. However he has clearly seen the results I have had from RT. The two (2) nodules in the arch of the foot have shrunk at least 80% since I began radiation in July 2013.

Now I am left trying to determine exactly when will be the best time to radiate this 'new' nodule. It is growing daily. But no one that I know of in the states has enough experience to make the determination as to whether this ‘new’ nodule is in the proliferating fibroblast stage. Exactly how I am supposed to make an educated decision as to when to proceed?
Ugh, I just want this nightmare over!

Hi Jolene,

Sorry for the continued delays in responding to your questions. I apologize.

I will do my best based upon my understanding to answer the questions I am able to.

Your Question: “Nan, did he tell you how do determine if one is in the proliferating stage?”

Response: I think S.B. did a great job actually of answering that question on the first page. “There are usually active signs that this is occurring, such as pain, tingles, aches, soreness, tenderness, pulling, redness, skin changes (pitting, pulling), blanching, other physical changes such as new nodules, growing nodules, growing cords.” S.B.

It is truly all of the above, unless you are one of those fortunate people that have no pain or minor discomfort, but only active growth of multiple nodules, growing nodules, growing cords. In my case for example: The right hand went from one nodule to 7 in about 10 months. The left hand has remained fairly stable with one cord.

Your Question:”At what time will you know its time to return for RT on the 3 limbs he did not treat?”

Response: 1) I will return in 3-4 months for second round of treatment, and further evaluation by Prof. S. 2) After that time, I will look for those symptoms above and chart I imagine for the rest of my life. 3) If I have any concerns or feel I may be ready for further treatment I will send charting information, photos and enquire to Prof. S.

Your Question: ”If we in the USA have to educate ourself about the proliferating stage, how then, are we to figure this part out?”

Response: I think that is answered above. But, what is clearly not always easy, at least initially, is determining what are nodules and cords and what isn’t. I certainly was mistaken about my feet. This is where an experienced oncologist trained in recognizing nodules and cords, and knowing the disease is important.

I have found that no matter what area of medical field you are led to in life with health issues, finding a qualified doctor is important and not always easy. I have posted before that it took me 4 orthopedic doctors to finally find someone capable of diagnosing my rotator cuff problem. I shutter to think if I had let the first 3 guys operate on me!

We are limited in the field of qualified oncologist experienced with this disease. I will express more of my thoughts on that subject when I write about my personal story. But, the knowledge is out there as well as the training for any oncologist willing to read, study, and learn.

Your Question: ”Also if we have had RT to early and it has not stop the progression what then? Is radiation allowed again?”

Response: I was told radiation can be done again, but only the new nodule would be treated. How soon that can take place I am not certain of.

If I missed something let me know. Hope that helps a bit. I am new to this disease as well, always learning and studying to understand more.

Nan

Edited 12/12/13 01:25

Tamarakruse:

---

And Nan, I am glad to hear that the one hand is already feeling better, and I can only imagine how hard it must be to not have help with the other and to think of going back possibly many more times. How will
You know when to, I wonder, after the second round check? Are you considering other options with your other hand?

Glad to hear you are feeling hopeful and glad you were able to see him, and get the best info. It is very confusing tho still to wonder at how he arrives at his conclusion that the time IS right.

Tamara

Tamara, if your question is whether to stop after one round of treatments, I think you could do that and still get some benefit from the first round.

Two things about dosage:

Outcome: The clinical trials have compared outcomes with two protocols: a single round of 7X 3 grays and two rounds of 5X 3 grays. The latter course, with more treatments, resulted in slightly better outcomes, but the difference was not statistically significant. Nobody can say for sure that 10X 3 Gy is better than 7X 3 Gy, even with years of data from the clinical trials. If you opted for just a single round of 5X 3 grays, you would have less dosage than either of the protocols that were compared. It seems reasonable that you would still get most of the benefit of the treatment after just the first round, but nobody will know for sure.

Risks: Even if they don't mention it, this is probably the reason that a doctor like Prof. S might refuse treatment if he/she thinks the timing isn't right. It's generally believed that the increased risk of cancer doubles if you double the total dosage. So if you were to stop after just the one round of treatment, you would cut the risk of radiation-induced cancer in half. That might make you feel more comfortable about getting more treatment later on.

If it were me, and I felt that I truly had an "active" condition in the hand at the time treatment began, I would probably finish it with the second round.

I don't think there's a wrong choice here either way. And it's not as serious a decision as compared to having surgery of one kind vs. another. So I would feel comfortable making your decision one way or the other, then just not worrying more about it.

Edited 12/12/13 23:07