My rads are WAY past due, I'm stressed.

[Chelee]

I have some issue going on with my anatomy and all the doctors can't agree on what to do with me and time is going on. Its stressing me out to no end.

I was told I have to start rads 3 to 5 weeks after my last chemo. This is already week EIGHT & I still have NOT started. I am worried because all I am on is herceptin..I need to get through rads to get started on femara or tamox or whatever they decide on? I need to stay on top of this.

I had a motified radical mastectomy on the right side. That same side I am missing ribs which means I don't have a normal chest wall. So if they radiate it will take out some of my lungs. Permanent damage they say.

I already have breathing problems as is. They sent me for a lung function test and said I have about 39% use of my lungs right now. So my pulmonary doctor was concerned about them hitting too much more lung. They wanted to do rads on incision, axilla, and collar bone. But they pretty much decided the incision will be impossible without hitting far too much lung.

But to do the axilla & collar bone they said it would still hit up by the tip of my lung...and they didn't know how much of that I am using? So they sent me for ANOTHER test Wednesday. Its a V.Q. lung scan. Its to see what part of the lung is using the oxygen and blood flow. (More radioactive gas to inhale and an injection of radioactive stuff.) I will have more cancer at this rate!

But as they continue to DEBATE this issue...does ANYONE know what happens when you go past the 3 to 5 weeks to start rads? If I used the 3 week mark since I have an aggressive cancer...I am six weeks LATE to start as of this coming Monday. (8-7-06) (this is really scarying me!)

Is there any point to even do rads this late? I can't find any information on this subject and when I asked my rad onc doc...he just says that they do like to start earlier...and there really aren't any studies about starting late. (That doesn't help me one bit.)

You all must know why I am stressed? Its that feeling that I am NOT actively doing anything. (I know I can't help it...but its just me really concerned, worried and upset.) I have three doctors involved in this...every time they have me do another test...I have to sit and WAIT for them to get back to me.

They said if they can't resolve this...or if they find they will hit too much lung...they will have to scratch my rads altogether. That scares me since the recurrance rate is SO HIGH. But being this LATE to start worries me too.

If I can't have rads...does everyone always recur in those areas? Did anyone else start rads THIS LATE? Help anyone.

Chelee

[Christine MH-UK]

Unfortunately, this is a big problem in my area because of a shortage of radiologists. What he wrote would suggest that you are right to push to get the problem resolved quickly.

The citation is Dodwell and Crellin, Waiting for radiotherapy, BMJ. 2006; 332: 107-109

I couldn't get into the article, since it first comes into the public domain in 2009, but somebody has quoted the relevant bit of it on his personal website:
http://www.thewelfarestatewerein.com...n_some_new.php

"The management of early breast cancer makes a colossal demand on radiotherapy services, and many studies have addressed the impact of delayed adjuvant radiotherapy in early breast cancer. A systematic review of 21 of these studies showed that local recurrence was increased by 60% if the interval between surgery and radiotherapy exceeded eight weeks. In a large epidemiological study involving 7800 patients treated with breast conserving surgery and postoperative radiotherapy, a surgery-radiotherapy delay of 20 weeks or more was associated with significantly increased mortality. These studies strongly suggest that delayed radiotherapy is harmful, and it would be specious to rely on the methodological shortcomings of these types of analyses to assert that delayed radiotherapy is safe. "

The 60% increase was mentioned other places as well, so I think that the quote is probably genuine.

[saleboat]

Hi Chelee,

If it makes you feel any better, I waited over two months after chemo before I started rads. My last chemo was Sept 23 and I started rads after Thanksgiving. I had a surgery to look at my lumpectomy margins, then I had a business trip, then I had...well, denial that I needed rads, then couldn't decide where I wanted to have the rads done...

I really don't know what the standard time frame is for rads, but none of the docs seemed to get too upset with my stalling techniques, until the very end.

Good luck with it all,
Jen

[mts]

Chellee,

Remember that the studies stating higher recurrences after waiting 8 weeks were done without the benefit of Herceptin... So, I would certainly consider that component.
I had two lumpectomies (and two healing periods) and chemo before I received my rads. Come to think of it, I received my rads nearly 7 months AFTER my first lumpectomy. There was chemo during that period -and that stuff lingers in you for a long time. I got my Herceptin after my Rads.
From what I was told, the portion of the lung that is damaged by the radiation is usually a pretty small sliver. My onc said that the remaining healthy lung "compensates" for the loss of the sliver...

I hope it all works out for you- I really believe that peace of mind is key to getting better.

Please let us know what your results are.

Maria (MTS)

[tousled1]

Chelee,

I think since you had a MRM and are on Herceptin that a delay in starting your radiation will not be harmful. It is best that the doctor's perform all the tests they need to in order to prevent permanent damage to your lung.

[Chelee]

Christine, Thanks for posting that link and information on delayed radiation. I have searched in vain and found nothing. Just great, everything that can go wrong with my tx plan has it seems. That is a BIG increased when they talk about 60%. I know I could never get anything out of my onc doc, or rad doc...they both just say "Yea, we like to start sooner." Then why didn't they look into all this along time ago? They said they put my case in front of a BOARD and it was all discussed. Now I have had one delay after another. This should of been discussed a LONG time ago. I am just stressed beyond belief. Thanks for posting that Christine.

That Rad onc office called me finally today and the nurse said my rad doctor told her to call me. They said my V.Q lung scan results is back and my rad doctor said he CAN start rads on me and will call me Monday. (I have herceptin Monday...so I will have to go find him when I am done.)

I am still stressed because I am still worried to death about them hitting any of my lungs...I have such a hard time breathing now...and he said there is no way NOT to hit some. This scares me because I have had so many things go WRONG HERE. This better go RIGHT for a change. I am more scared about this...then I was about chemo.

Plus they already decided they CAN'T do the main incision where I had the modified radical mastectomy...only under the axilla area and collar bone. But I was told that is the two most important areas...I hope thats true?

It will be NINE weeks as of Monday. I wonder how much harm has been caused from this major delay with such an aggressive cancer? (Its always something...darn all of this...its so stressful.)

Thanks again Christine.

Chelee

[Chelee]

Maria, Thanks for giving me something positive to think about. I never thought of how we now have the herceptin...and we KNOW that study didn't include that. I will take any positive thing I can think of to help ease my stress level right now. And your right about the radiation only hitting a sliver of lung...but on me...thats alot. Thats why all the doctors were discussing me. I HAD to be different. I ONLY have 39% use of my lungs right now...and my rad doc said he would probably hit another 12%. That 12% is ALOT in my case...thats what scares me. I don't want to be hooked to oxygen all the time. I have been there and done that already through chemo. And rads damage is permanet. I am stuck between a rock and hard place. The NORMAL lung on any person could handle this...but my lungs aren't normal. (I don't have healthy lungs..in fact my CT scans after my chemo shows MORE permanet damage in both lower lungs.) Scarring it said.

But I am glad you pointed out the herceptin...that has to of helped some. I wonder what their studies would of been had they been included? I pray to God I get through this...I have never been so terrified.

Thanks Maria.

Chelee

[janet/FL]

Chelee
I am sending calming thoughts your way. My rad oncs didn't seem to be to in a hurry for the treatments as they say it is just for the local area and that cancer usually grows very, very slowly--plus, you have Herceptin!
Hugs
Janet

[kareneg]

Hi Chelee,

I know how you feel all though I have never had to have rads but I have been on treatment for almost eight years now, and this past April I started progressing on Taxol, Carbo and Herceptin. So my oncologist said I am going to try to get you on a clinical trial with Lapatinib,so on that day I left his office with nothing....... no appointments for treatment no follow-ups nothing I felt like I was just left for dead. It's a horrible feeling! I know how you feel it's not right we should not have to worry like this! I went thru over 2 months with no treatment nothing at knowing that I was progressing, what a horrible feeling! I went from 8 years of treatment and doctor visits and having a routine to nothing at all. It is not right being put through this!!!
I am sending you all my best wishes and prayers, and to let you know your not alone.

[Chelee]

Tousled1, Thanks so much for your supportive post. Right now I really need it. I was doing SO GOOD for a while...now I am close to total melt down. (I am really feeling alone...so I can relate far to well when others say that.) Plus my husband isn't much help.
But thanks for giving me *positive* things to think about in my situation instead of all the worry I have been putting myself through. I seriously didn't think of the fact I did have a MRM and the herceptin...that HAS to help some.

Janet, Since all my doctors delayed this so long...I suppose I shouldn't worry as much...even though I will admit...I have been. Thanks for letting me know your rad onc wasn't in a big hurry...every little bit helps. I am serious...I haven't been this stressed in a long time. I just wanted to get through this. (I think it wouldn't off been such a worry if it wasn't such an aggressive cancer.) I will swear my tumor grew over night! It was NOT there and bam...then it was. Pretty scary! They say they take years...but I am starting to wonder about these her2 cancers?
Thank you SO MUCH for your support...I am so thankful for this board because I don't have anyone that seems to care. This board means everything to me right now...I would be LOST without it.

Karen, Thats what I love about this board. People can really relate to what someone is going through as most have all been there in one way or another. I can seriously understand how you must of felt when they did you that way! Talk about stress. That had to be awful to leave and just sit around for all that time WAITING for them to get back to you while you wonder how large the tumor might be growing. (Because we all know that is what is going through your mind.) Then you start worrying about it spreading, etc. Then well meaning family and friends tell you to relax, don't worry..think positive...things will work out. (If they only knew...thats darn near impossible.) Especially when you know you STILL need tx and there is NOTHING being done. Its scary.
Thanks for your support and sharing your story Karen. I really appreciate it so much. Gee...if it wasn't for ALL of you...I would really have a complete melt down.

What a awesome bunch of ladies here. (And men!)

My sincerest thanks to everyone here. God bless each and everyone one of you.

Chelee

[Val Pfeiffer]

I didn't take the time to read all the responses, so maybe someone addressed this. Are they looking at an IMRT appraoch to planning your radiation treatments? I presented a proposal to my health insurance provider to step out of plan in order to get this treatment so I could protect by heart and lungs. They concurred; the case i presented was one that postulated that future health problems would be lessened and the radiation treatments would be more effective with this type of treatment approach. In your case, perhaps that is what is needed. If you need the oncology journal article references to this topic, please let me know and I will send you the ones I cited in my research.

[Chelee]

Val, I had not heard of IMRT until your post. I have *no* idea what kind or type of radiation they use here? However I did a search on it and that sounds like the type I NEED! I sure wish I was NOT WAY past due on radiation...because I have a feeling had I known and put a request into my HMO about the problems with my anatomy and Rads...they WOULD of Ok'd this for me with no problem. I don't know how they could of refused it given all the medical history on me to support the need for this.

Tomorrow (Monday) is already WEEK NINE. I should of had rads between 3 to 5 weeks. So I am weeks behind. But I sure would feel SAFER with this apporch when it comes to radiation. I can't breath as it is...I can't afford anymore lung damage!

This Rad onc is talking about hitting another 12% of my lungs....I am sorry...it might not be much to him...but scares the he$$ out of me! But I wish I had another 2 or 3 weeks to start and I would seriously LOVE to call my insurance company to request this type of rads. (I have a feeling that isn't the kind they have where I am going!)

I sure appreciate you telling me about it though. Tomorrow i go for herceptin and I am suppose to get the go ahead on rads. So I will at least mention it to this Rad onc doc and see if there is ANY WAY to get me set-up ASAP for some place that has this. Can't hurt to try. Although this rad onc doc seems to think I will be fine...but I have heard that before as I landed in the hospital.

Does anyone here think I could take a chance and contact my insurance company and see if they could "expedite" this for me so I could use this type of machine? And since I am at nine weeks already...maybe a couple more days wouldn't hurt...as long as it was ONLY a couple days! I would sure feel better about Rads if I could have it done this way. These people don't know my anatomy like I do. They are going to hit more lung then they think...and I already have severe scoliosis...and if they weaken any of the bones in the area...I am going to be in lots of trouble. I am just terrified..I really am.

Thanks a million Val. Its so sweet of you to post this information.

Chelee

[Val Pfeiffer]

The most important thing with IMRT is to work with a radiation oncologist who is experienced with it--and that includes experienced radiation techs.

AlaskaAngel and I just had an email conversation about IMRT; she had some scar tissue result from IMRT in 2002, so she had some legitimate concerns about IMRT, but in her situation she had had a lumpectomy, and the type of IMRT I researched involved only mastectomy cases, which, based on what I have read, require completely different radiation approaches. I bring this up because, as with any treatment, side effects and downsides should be thoroughly explored.

In any case, here is a list of the journal articles that I reprinted in the research document and case statement that I submitted to my health plan when I was requesting to step out of plan to get this type of treatment. My rad onc, Edie Krueger, studied under Lori Pierce at U of Michigan, and she co-authored with Lori one of the articles below:

1. Breast IMRT: New Tools Leading to New Vision, Int. J. Radiation Oncology Biol. Phys, Vol 54, No. 5, pp. 1297-1298, 2002.

2. Clinical Aspects of Intensity-Modulated Radiotherapy in Treatment of Breast Cancer, Seminars in Radiation Oncology, Vol 12, No 3 (July) 2002, pp. 250-259

3. Potential Gains for Irradiation of Chest Wall and Regional Nodes with Intensity Modulated Radiotherapy, Int. J. Radiation Oncology Biol. Phys, Vol 56, No. 4, pp. 1023-1037, 2003 (this isn't the appraoch for my case, but it's info about IMRT that could be useful)

4. The Use of Radiotherapy After Mastecomy: A Review of the Literature, J Clin Oncol, 23:1706-1717, 2005

5. Cardiac avoidance in breast radiotherapy: a comparison of simple shielding techniques with intensity-modualted radiotherapy, Radiotherapy and Oncology 60 (2001) 247-255


I have a couple others, but this should be enough to get you started. If you have a fax, I'd be happy to send these to you (if you promise not to bust me for copyright violations!) or I can mail you copies -- if you want to do some heavy reading before your appointment. My email is vpfeiffer@gmail.com--let me know what you need.

Good luck!!!!

[Chelee]

Val, Thanks for posting all the links...I can't wait to go check them out. I do agree one should be fully aware of all the benefits and RISKS of any thing we choose to go with. As you know from my post, I did have a mastectomy...so this should be fine but I will find out more tomorrow about it. I did a search and it looks like MY Rad onc doctor knows all about IMRT. If its better for me it should NOT be a problem from what I found tonight online. He never brought it up to me though? At least I know now what to ask him. I wasn't even aware of the different rad tx plans they have and use. I am glad so glad you brought to my attention.

After my appts tomorrow...if I want the other ones FAXED to me...I will email you. Again...that is so sweet of you to help me out like this. And NO WORRIES...I promised NOT to have you thrown in the pen. LOL (Too funny.)

Thanks again Val.

Chelee

[lu ann]

Dear Chelee,

IMRT is what I had at Cancer Treatment Centers of America. I went there for a second opinion when the rad. onc. here said he could not treat both my spine mets and mediastynm.

They also got a new Tomotherapy unit 2 years ago. I was there when they were constructing the building around the Unit. The Tomotherapy is used primarily for brain tumors and areas that have had the limit of rad. treatment. The unit zeros in on the tumor and spares the normal tissue. I would at least call them and get info.

Love and Blessings
Lu Ann

[Chelee]

lu ann, You mentioned the CTCA to me before when I was having a different problem. I did call them...they were really nice and tried to help me as much as possible. The women I talked to seemed as if since my insurance like since my insurance would not be accepted there...they couldn't do much for me. I have no way of paying for it either. I am LOCKED into one of those groups. Now sometimes you CAN go out-of-network if your group can't provide what is needed...which right now I MIGHT fall into that category.

But the biggest problem I am worried about now is how LATE I am in starting rads. Ten weeks already! I should of started at three weeks...I am sure glad the place I am going it really worried about it when I am stage IIIA. So even if I could go to CTCA...I don't have much more time to arrange something like that. It sure seems like there should be some way of doing my radiation without doing more damage to my lungs?

But I sure appreciate your information. Thanks for trying to help me.

Chelee

[heblaj01]

Chelee,

Check with your onc &/or lung specialist if these improved radiotherapies (less collateral damage,increased efficacy) are suitable for you:

http://www.medicalnewstoday.com/medi...p?newsid=38214
23 feb 2006
Dale And Frances Hughes Cancer Center In Eastern Pennsylvania Offers Cancer Patients Ultra-Precise Image-Guided Radiotherapy Treatments

http://www.ivanhoe.com/channels/p_ch...id=CHAN-100003
December 26, 2005
Ultra-Precise Radiation

http://medicineworld.org/blogs/breas...with-heat.html
March 2, 2006
Treating Breast Cancer With Heat