One morning, a couple flew in from Kuala Lumpur specifically to seek our advice. He is a Datuk, and following the norm, his wife is referred to as Datin. But for this story, let us call her Ms B. 

Listen to what Ms B and her husband told us this morning:

 Comments 

In an earlier posting I wrote about Ms A — whether she should take tamoxifen after her lumpectomy. As a follow up, this story about Ms B is whether she should go for radiotherapy after her breast surgery. First, put these two stories side by side, what can we learn from these two stories?

1. There is a striking difference with the attitude of Ms A and Ms B. I have often said, cancer is about human being. It is not just about a lump in your breast. Ms A came to see us as a side line while on a home coming trip for the Chinese New Year. Ms B and her husband specifically flew from Kuala Lumpur just to consult with us and flew home immediately after that. 

2. While Ms A came willingly, trying to seek our opinion, I was not too sure if she had the full support of her husband. He could even be hostile to the idea of his wife taking herbs and not taking tamoxifen as recommended by the doctor.

On the other hand, Ms B’s husband was solidly behind his wife’s desire to find another alternative to the recommended radiotherapy.

No, the subject of radiation being “scientifically proven” never cropped up at all. The couple came with a certain degree of belief in whatever they are seeking from us. What they needed is the extra “confidence” to go forward.

As a result, they wanted to give our therapy a try. On the contrary, I sent Ms A home without any herbs!

Okay, what is my answer to their question: Should I go for radiotherapy as recommended by my breast surgeon (the same surgeon that operated on Ms A).

1. I am sorry, I cannot answer that question out right. Because in the healing of cancer, there is no right or wrong way. It just has to be your own way. You have to make that decision yourself.
2. At times when you are lost, I ask you to pray to your god. In this case, Ms B needs to see the answer from Kuan Yin, the Goddess of Mercy.
3. However, let me say that radiation itself causes cancer. There is no doubt about this.
4. Patients need to understand that they need to learn how to heal themselves. Change your lifestyle, your attitude in life and your diet. Don’t stress yourself too much.
5. You are going to face a lot of pressure around you for not taking the “medical path”. There are enough “professors” giving you all kinds of advices. You need to be strong and firm in your decision. In this case, Ms B’s daughter is a doctor! Indeed, it is a difficult situation for her.

Besides coming to talk to us, I suggest that you read what is written in the internet. Here are some examples. 

Forum Topic: Long Term Radiation Side Effects 10+ years After? https://community.breastcancer.org/forum/70/topics/816658

Barbarella 60 wrote:

I am new to this forum and I am looking for others and help in what I am now experiencing.  I had left breast Stage 1, ductal in situ, 1cm in size about 18 years ago. I had a lumpectomy … 3 treatments of chemo consisting of Adriamycin, Cytoxin, and 5 fu, followed by 7 weeks radiation, then 3 more treatments of chemo.

I was given extra doses of radiation because of a hospital confusion. I also had 5 years of tamoxifen. Do you think overkill?

Now 18 years later I am experiencing severe left breast fibrosis with major dimpling at the lumpectomy incision site, hardening and swelling of the breast.  I thought my cancer had returned but negative.

Also having stabbing left chest pains occurring occasionally.

Now 2 years after the onset of the fibrosis I am having shortness and trouble breathing, dizziness, tired with no absolutely no energy.  I had all heart tests including cardiac catheterization angioplasty.  All negative.

I am grateful for my life, but all the side effects from the chemo & radiation have had a significant effect on my health.

Has anyone experienced side effects becoming major health issues years after the treatment? I don’t know where to go, since no one seems to know about this.

CessaLyn wrote:

I was diagnosed w/ right side, stage 1 ductal in situ 3 cm, estrogen positive, breast cancer, with no lymph nodes involved, on Dec 27, 2004, had lumpectomy 17 days later on Jan 13, 2005, followed by 12 weeks of radiation.

I’m here over 7 yrs later, w/ no reoccurrence, yet still suffer greatly from underarm & chest wall/muscle/rib pain, with swelling! Hurts to raise my arm above my head, or to wash the back of my hair, or to stretch in any fashion? I’m told it is probably costochrondritis … began almost immediately with the start of the rad treatments.

…  Please, Please, Please, – anyone who is newly diagnosed, in early stage, take the time to do the research, read personal experiences and not just what the radiologist/oncologist is telling or not telling you, I sometimes wonder if it was a $ issue not to bring up other types of rad treatment since the final bill to my insurance co. For just the rad treatments was close to $79,000 – YOU have to live with the side effects, they don’t! Happy to be here, but would like a little less pain.

… You are right.  They need to give you truthful, information on the treatments and the side effects.  Back 18 years ago lumpectomy & radiation.  I remember not having a second thought in having radiation.  Now my armpit is swollen, pain & fibrosis in left breast and possible heart & lung damage.  If I had it all to do over again I would have a double mastectomy.  No radiation.  But what’s done is done.  Gotta go on from here, no redo. They know a lot more information today than then. But our decisions should be discussed by independent parties with no financial involvement.

Gilbert wrote:

I had a lumpectomy followed by 31 rad treatments that ended Jan10,  I am really sore over my whole breast, thought about calling the doctor, but not sure what he could do anyway.  He wasn’t very helpful when I was going through treatment. They sure don’t inform us very well about the effect that the radiation will have on us.  I think it it’s all about the money.  Every time I would ask about a certain problem They would tell me the only side effects were just fatigue.[bs] and that could last for awhile after rads were over. I seem to be getting sorer by the day, I hate to think that this could go on for years..

I do remember how tight and red and burning it was for a while afterwards.  I think it took quite a while for my skin to feel like it wasn’t going to rip.  I know but that is how tight it was.  I was very diligent in using all the cremes they recommended.  I also had 3 months (9 weeks), 5 days a week, of radiation. Then immediately after radiation I started the 2nd series of 3 treatments for 7 weeks of chemo. After that 5 years of tamoxifen.

Believe it or not, my whole arm pit and back towards my shoulder blade is still numb.  If I have an itch I have to use a wooden back scratchier and just scratch as hard as possible to feel it.  It is very uncomfortable having an itch that can’t be satisfied! Just one of the sides I’ve had for 18 years.

Sunny1012 wrote:

I am new to this nightmare.  I had a lumpectomy on January 8, 2014 for ILC Stage 1 and sentinel lobe removal.  I had a long consultation with the radiation oncologist and did not leave feeling convinced about radiation treatment.  I am considering skipping radiation and just doing the Tamoxifen even though I am not crazy about that either.

I have read every piece of research I can on radiation and its a damned if you do and damned if you don’t situation.

I also would like to hear from survivors who can share the pros and cons of radiation in their choice and life to this point. The decisions we must face on this journey are overwhelming .  Please share your thoughts. Thank you

Desalonde wrote:

I am a bit further along than you are but can only share your sentiments and not really shed much light. I have read lots of medical articles going back years and consulted 3 rad oncs and it seems clear there is no consistent “prescription” even for same person…. different docs give different opinions depending on where they trained so a lot of it is culture and custom not hard science about what is minimum effective dose.

That means making decisions with blinders on.

What is worse…. RO may be ( mine is) defensive and irritated when you quote a literature info of concern to you and insist that you” trust” their experience……even though they disagree among themselves and may contradict the literature.

It’s primitive and makes me mad because women deserve better science to reduce the suffering that accompanies these treatments! 

Here are what researchers and doctors said about radiation for cancer!