I second what EdJ3 posted - RADs is the gift that keeps on giving for months and months later. Can even have SEs that appear out of nowhere 3 to 6 months down the road when all was fine to that point.

I'd suggest getting that referral for PT. They can give you range of motion excesses that will definitely help with the tightness and pain. My armpit used to feel like a ball of fire that would tear in half at the slightest movement, due to my Lymphedema and cording. Now I don't feel a thing.

Good luck and keep us posted.

Radiated skin tightens up. I get a myofascial massage once a month to loose the area.

yes! get PT. I wish I wouldve gone earlier.

I've had the same issues with neck, shoulder, rib cage, armpit...pretty much that entire area. I had rads to chest wall, supraclav and IM nodes. I am 18 months out from rads and have been going to PT pretty religiously. It has gotten better, but if I take a break from PT, it pretty much erases everything that I've worked on in PT in a matter of a few weeks. So frustrating. I wish there was a more permanent solution to this problem. I also find that when I take a break from PT and my muscles tighten up, I am more prone to severe migraines. I'm sure that rads was necessary, and hopefully did the clean up job it was supposed to do, but ugh, these side effects...

ksusan - do you go to PT for the myofascial massage or is it a certified massage specialist?

I had ridiculous tightness. I had this PT pulling things loose, so painful when my axilla was pulled on the tears ran down my face. The radiation fibrosis really tight, my skin and muscles weird and woody. Then I got Hyperbaric Oxygen Therapy, also known as HBOT, as well as Fat Grafting with reconstruction. .

Pain and tightness disappeared almost completely. Most notable was the stiff, " wood-like" quality of my skin is gone and my skin feels supple and normal again. I couldn't have lived with that insane tightness.

Please look into HBOT, and potentially Fat Grafting, even if you don't do reconstruction because it actually Heals the damage from rads.

________________________________________________________________________________________________________

Radiother Oncol. 2004 Mar;70(3):217-24.

Non-randomised phase II trial of hyperbaric oxygen therapy in patients with chronic arm lymphoedema and tissue fibrosis after radiotherapy for early breast cancer.

Gothard L1, Stanton A, MacLaren J, Lawrence D, Hall E, Mortimer P, Parkin E, Pritchard J, Risdall J, Sawyer R, Woods M, Yarnold J.

Author information

1

Department of Radiotherapy, Royal Marsden NHS Trust, Sutton, Surrey SM2 5PT, UK.

Abstract

BACKGROUND:

Radiation-induced arm lymphoedema is a common and distressing complication of curative treatment for early breast cancer. Hyperbaric oxygen (HBO(2)) therapy promotes healing in bone rendered ischaemic by radiotherapy, and may help some soft-tissue injuries too, but is untested in arm lymphoedema.

METHODS:

Twenty-one eligible research volunteers with a minimum 30% increase in arm volume in the years after axillary/supraclavicular radiotherapy (axillary surgery in 18/21 cases) were treated with HBO(2). The volunteers breathed 100% oxygen at 2.4 ATA for 100 min in a multiplace hyperbaric chamber on 30 occasions over a period of 6 weeks. The volume of the ipsilateral limb, measured opto-electronically by a perometer and expressed as a percentage of contralateral limb volume, was selected as the primary endpoint. A secondary endpoint was local lymph drainage expressed as fractional removal rate of radioisotopic tracer, measured using lymphoscintigraphy.

RESULTS:

Three out of 19 evaluable patients experienced >20% reduction in arm volume at 12 months. Six out of 13 evaluable patients experienced a >25% improvement in (99)Tc-nanocolloid clearance rate from the ipsilateral forearm measured by quantitative lymphoscintigraphy at 12 months. Overall, there was a statistically significant, but clinically modest, reduction in ipsilateral arm volume at 12 months follow-up compared with baseline (P = 0.005). The mean percentage reduction in arm volume from baseline at 12 months was 7.51. Moderate or marked lessening of induration in the irradiated breast, pectoral fold and/or supraclavicular fossa was recorded clinically in 8/15 evaluable patients. Twelve out of 19 evaluable patients volunteered that their arms felt softer, and six reported improvements in shoulder mobility at 12 months. No significant improvements were noted in patient self-assessments of quality of life.

CONCLUSION:

Interpretation is limited by the absence of a control group. However, measurement of limb volume by perometry is reportedly reliable, and lymphoscintigraphy is assumed to be operator-independent. Taking all data into account, there is sufficient evidence to justify a double-blind randomised controlled trial of hyperbaric oxygen in this group of patients.

____________________________________________________________________________________________

Hyperbaric oxygen therapy for late radiation-induced tissue toxicity: prospectively patient-reported outcome measures in breast cancer patients.

Teguh DN1,2, Bol Raap R3, Struikmans H4,5, Verhoef C6, Koppert LB6, Koole A3, Huang Y7, van Hulst RA3,8.

Author information

1

Hyperbaar Geneeskundig Centrum Rijswijk, Treubstraat 5a, 2288 EG, Rijswijk, The Netherlands. d.teguh@hgcrijswijk.nl.

2

Department of Surgery/Hyperbaric Medicine, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands. d.teguh@hgcrijswijk.nl.

3

Hyperbaar Geneeskundig Centrum Rijswijk, Treubstraat 5a, 2288 EG, Rijswijk, The Netherlands.

4

Department of Radiation Oncology, Leiden University Medical Centre, Leiden, The Netherlands.

5

Radiotherapy Centre West, Medical Centre Haaglanden, The Hague, The Netherlands.

6

Department of Surgical Oncology, Erasmus MC Cancer Institute, Rotterdam, The Netherlands.

7

University of Leuven, Leuven, The Netherlands.

8

Department of Anesthesiology/Hyperbaric Medicine, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.

Abstract

INTRODUCTION:

This study examines patient reported outcome measures of women undergoing hyperbaric oxygen treatment (HBOT) after breast-conserving therapy.

METHOD:

Included were 57 women treated with HBOT for late radiation-induced tissue toxicity (LRITT) referred in the period January 2014-December 2015. HBOT consisted of (on average) 47 sessions. In total, 80 min of 100 % O2 was administered under increased pressure of 2.4 ATA. Quality of life was assessed before and after treatment using the European Organization for Research and Treatment of Cancer (EORTC) QLQ-BR23, and a NRS pain score.

RESULTS:

Fifty-seven women were available for evaluation before and after treatment. Before HBOT, patients had severe complaints of pain in the arm/shoulder (46 %), swollen arm/hand (14 %), difficulty to raise arm or move it sideways (45 %), pain in the area of the affected breast (67 %), swollen area of the affected breast (45 %), oversensitivity of the affected breast (54 %), and skin problems on/in the area of the affected breast (32 %); post HBOT, severe complaints were still experienced in 17, 7, 22, 15, 13, 15, and 11 % of the women, respectively. Differences were all significant. The NRS pain score improved at least 1 point (range 0-10) in 81 % of the patients (p < 0.05).

CONCLUSION:

In these breast cancer patients treated with HBOT for LRITT, the patient-reported outcomes were positive and improvements were observed. HBOT was a well-tolerated treatment for LRITT and its side-effects were both minimal and reversible.

________________________________________________________________________________________________________

3293

Hyperbaric Oxygen Therapy for Improvement of

Radiation-Induced Late Toxicity

R. Roncero,1 J. Pardo,1,2 E. Jimenez Jimenez,1 D. Morera,3 N. Aymar,1

M. Vidal,1 I. Ortiz,1 and L. Valencia1

; 1

Hospital Universitari Son Espases.

Radiation Oncology Department, Palma de Mallorca, Spain, 2

IdISPa.

Institut d'Investigacio Sanitaria de Palma, Palma de Mallorca, Spain,

3

Hospital Universitari Son Espases. Medical Physics Department, Palma

de Mallorca, Spain

Purpose/Objective(s): To assess the efficacy of hyperbaric oxygen ther-

apy (HBOT) in the management of patients with radiation-induced late

effects, in which more conservative treatments have failed.

Materials/Methods: We retrospectively reviewed the clinical records of

33 patients treated at our Department, from 2012 to 2016, who

developed late toxicity (Grade IV CTCAE4.0) and who had not

responded to conservative treatment. After hyperbaric oxygen treat-

ment, the variation, if occurred, in the degree of toxicity was recorded.

The average age of the patients was 61 +/- 12 years and the mean dose

delivered during the radiotherapy treatment was 52 +/-12Gy with

standard fractionation. The toxicities presented were: enteritis/proctitis

(33%), bone necrosis and sacroileitis (30%), skin injury (9%), Cystitis

(6%) and others [neurocognitive impairment, dysphagia and xeros-

tomy] (9%). The patients received an average of 61 sessions of HBOT.

In order to its evaluation, responses were classified into three groups

according the CTCAE4.0 scoring: Major Response: Improvement of

toxicity from Grade IV to Grade I or 0 (without toxicity, or minor

toxicity not requiring medical treatment), Minor Response: Improve-

ment from Grade IV to Grade III/II (permanent toxicity controlled with

medical treatment) and No Response. The statistical study was carried

out by using SPSS_22.

Results: Ninety-one per cent of the patients (30) completed the treat-

ment sessions with hyperbaric chamber scheduled (2 patients didnt

start the treatment and 1 patient stopped after 4 sessions). Statistical

significant toxicity improvement (p<0.05) was observed after the hy-

perbaric oxygen treatment. 60% of the patients presented a Major

Response, and 18% presented a Minor Response. 9% (3) of our patients

were no responders. Major responses were founded in patients with

bone and gastro-intestinal toxicities. No relationship was founded be-

tween the degree of response and the age, or the time relapsed since

radiation treatment to the indication of the HBOT. Table 1 presents the

patients outcomes according the toxicity.

Conclusion: In our patients, there is a significant improvement in late

radiation toxicity after HBOT, with the best responses being observed in

gastro-intestinal and bone toxicity.

Author Disclosure: R. Roncero: None. J. Pardo: None. E. Jimenez

Jimenez: None. D. Morera: None. N. Aymar: None. M. Vidal: None.

Your muscles are being cooked from the radiation or to put it in medical terms fibrosis. The radation is causing the blood vessels also to die and scar tissue to form especially your pectoralis major and minor and your serratus anterior. The only FDA-approved treatment is HBOT though this will never restore your muscles to per-radition. Did you ask your doctor exactly how much the radiation is lowering your risk of recurrence as these symptoms will only get worse... Also for DCIS certain doctors only do a wait and see and do not do any treatment. The idea that radiation is a correct treatment is overkill for DCIS stage 0 cancer.

HI everyone,

This is another example of a huge problem in the cancer industry. In June 2011 a study was released that the majority of women who receive lumpectomy and radiation will be in moderate to severe pain for a year. Was this ever explained to you by your doctor? Did they explain how much radiation would help you? In some women it only lowers the chance of their cancer coming back by 7%. Is that worth a year of pain...and is that right for your doctor to decide that for you by telling you you must have a treatment. Also, did he tell you that there is treatment? The only treatment is HBOT with is FDA approved for radiation pain and muscle damage. Most radiation oncologists do not know this. SO they give you a treatment that causes you pain, don't tell you how much it is helping you and then they don't even know how to treat it.

I need your stories!I am currently writing a book on stage 1 breast cancer as I had a horrific experience that didn't need to happen.These ranged from gender bias where my symptoms and pain were not believed, resulting in unnecessary suffering and damage, to doctors having very little knowledge in their fields, for example Hyperbaric oxygen specialists that not only unaware that it is the only approved treatment for radiation damage, but even after giving them studies to support this, they still didn't believe me and refused treatment.

On top of this, there is the industry's constant over simplification of guidelines (mastectomy or radiation and lumpectomy for every stage 1 BC case) and the over treatment of patients.In 2018 a study came out that 70% of early BC patients did not need chemo.Then why were they giving chemo patients that didn't need it!Why were they testing a treatment before it was administered! Women are never told how much each of these treatments will help them so they cannot weigh the benefits and costs to treatment.They are just told they have to do it.For example, some women will only receive a 7% reducing in the chance of their cancer coming back from radiation and this is according to the NCCN the governing body or cancer research. Shouldn't these women get to decide if that benefit is worth permanent damage and the possibility of severe side effects?)Then to top it off, there is no accountability in the industry (please read "Unaccountable" by Dr. Makary) and completely driven by money (please read "The Price We Pay" also by Dr Makary. Dr. Makary is a surgeon and teacher at Johns Hopkins Bloomberg School of Health)

So I want to hear from you.Were you ever told how much different treatments will help you?Were you ever in pain and a doctor said it was in your head or it wasn't that bad?(Both of these were said to me.)Were you told about all of the side effects of treatments, before you started the treatment, such as a long-term safe effect of chemo is cardiovascular damage?Or that you would have permanent damage to your skin, muscles, ribs (and heart of it was done on your left side) from radiation?Post-cancer did you have issues and no doctor had the knowledge to help you?

To all of my BC sisters I want to thank you for your time and we will get through this!!

Beclyln - no one has posted on this site for over a year so you many not get responses. If you check the search function you'll find a number of recent threads discussion radiation tightness.